"Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions
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A doctor's prescription for social media

A doctor's prescription for social media | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it
As an experiment,  I immersed myself in social media for the past three months.  I started this blog, joined Twitter, LinkedIn, Google+, bought a domain name, and posted on Facebook for the first time in years.  Even within this short period of time, I reaped tangible benefits: I interacted with top physicians from across the …

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How Pharmacists Can Drive Patient Engagement, Value-Based Care

A report from the Pharmacy Quality Alliance noted that the transition to value-based care will promote pharmacists as arbiters of patient engagement.



March 28, 2019 - Prioritizing value-based care principles and patient engagement outcomes will help integrate the pharmacist as a key member of the patient care team, according to a new report from the Pharmacy Quality Alliance (PQA).


Pharmacists are some of the most central healthcare figures in patients’ lives, according to PQA CEO Laura Cranston, RPh.


“Pharmacists are the clinicians most accessible to patients and uniquely positioned to provide care that effectively engages patients in medication management and chronic disease management,” Cranston said in a statement. “The recommended actions identified by this task force can help pharmacists sustainably partner with payers and other healthcare stakeholders to deliver essential, value-based care.”

Dig Deeper


The report, which outlines the steps both community pharmacies and payer partners can make to emphasize pharmacist-provided care, noted that the basis for pharmacist-provided care is the industry transition to value-based care. Pharmacy care is set up to deliver on value-based care priorities by driving medication adherence, measuring patient outcomes, and making patient satisfaction a priority.


“Centered on patient engagement, pharmacists deliver high-quality, affordable care in accessible community settings that improve patient outcomes,” the report authors said. “The pharmacist-provided care includes the collection of patient information, assessment of patients, the identification of intervention opportunities, the proactive engagement of patients in services such as medication synchronization, medication therapy management, immunizations, point-of-care testing, chronic disease management, and appropriate follow-up for monitoring and evaluation.”


In fact, it’s that emphasis on value-based care that can help propel the pharmacist into a more prominent position as a member of the patient care team, the report authors contended. This will require actions on the part of payers and community pharmacists, as well as teamwork between the two.


Payers foremost should establish risk-based partnerships with community pharmacies. These partnerships can serve as the backbone for pharmacist-provided care.


Payers may begin by creating hybrid partnerships that combine fee-for-service and value-based care, easing the transition to fully value-based care. These programs should come complete with a clear system for monitoring and assessing value-based care success and alignment between payer and pharmacist reporting goals.


Additionally, payers should allow for better patient data exchange between themselves and pharmacist partners.


For their part, community pharmacies need to empower their employees in pharmacist-provided care models, the report noted. This will require training individual pharmacists in patient interactions, clinical skills, and certain value-based care reporting requirements. Pharmacists may also need help with technology functions and data access.


Additionally, pharmacy leaders may consider areas to drive efficiency as pharmacists begin to spend more time with patients. This will allow for more patients to be seen as well as ensuring pharmacists turn a profit.


Finally, pharmacy leaders can standardize patient engagement and clinical care to create reliable experiences for patients and payers. Patient engagement should include medication adherence checks, medication synchronization, medication therapy management, and other care interventions.


The transition to pharmacist-provided care will also require teamwork between pharmacy leaders and payers. Both parties will need to compromise on its shared priorities for patient outcomes. Additionally, pharmacy leaders and payers should drive care requirement alignment across all payers.


Payers and pharmacists should implement pharmacist-led care in all community pharmacies, ensuring all patients have access to more holistic care. Payers and pharmacies can first implement pharmacist-provided care among high-risk patients and move into lower-risk populations.


These steps are aimed at driving higher quality patient care in and out of the pharmacy. When pharmacists can guide care and practice patient engagement, they work as another layer to promote patient-centered and value-based care.


And with pharmacists as the providers many patients see the most, they are well-positioned to drive these outcomes, according to Loren Kirk, PharmD, the director of Stakeholder Engagement at PQA.


“Pharmacists and payers share the same goal,” Kirk said. “Both want to improve patient outcomes. Now is the time for pharmacies and payers to align their efforts and develop sustainable partnerships that are mutually beneficial and advance high-quality patient care.”


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How Patient Empowerment, Tech, Will Drive the Future of Healthcare

Combining patient empowerment and functional technology will lead to a future of holistic healthcare.



March 25, 2019 - The healthcare industry is edging toward change, promising a future of patient empowerment where consumers, with the help of patient engagement technology, can manage their own health and keep chronic illnesses as bay.


By 2040, healthcare professionals can expect to see a patient steeped in knowledge about her own health through open access to her own health data. Through high-touch but remote nudges, this patient will know if she is at risk for developing a chronic illness and will have the support necessary to manage that risk and prevent the disease, according to Neal Batra, a principal in Deloitte’s Life Sciences and Health Care practice.


“You get to a point pretty quickly where you have enough readings, and you have enough understanding about the human body, and you have enough understanding about the data sets around us as individuals that expect health, that you can link these things up through algorithms and artificial intelligence and sensors and smart tech that may be embedded in clothing and smart tooth brushes and smart toilets,” Batra said in an interview with PatientEngagementHIT.com. “You start getting this world where technology allows you to understand.”


Eventually, the healthcare industry will get to the point where technology can overcome any of its usability and cost issues and be a truly feasible aspect of every patient’s life. From there, patients and providers can get on the front end of a disease, intervene in non-invasive ways, and create a less complex or arduous healthcare process.


But getting there will be challenging, Batra said. The industry is currently not configured in such a way that this future vision of healthcare is feasible. Providers, payers, and pharmaceutical companies stand to profit when individuals are sick simply because of the different incentives that exist.


READ MORE: What Is the Future for Patient Engagement Technology, Health IT?


“Right now, the ecosystem has balance, but it has misaligned incentives,” Batra explained. “It's highly unlikely that change is going to come from within. It's very hard for a market participant right now to change a value dynamic with another stakeholder and not have real ramifications with them somewhere else in the ecosystem.”


For example, if a pharmaceutical company insisted on creating consumer-facing price transparency for a specific drug, the pharmacy benefits manager (PBM) might punish them on all of the other drugs they carry from that manufacturer. When one player moves a lever, they’re punished elsewhere, Batra said.

It will require an outside entity to spark change, and the patient is well-positioned for that.


“Individuals are finally at a stage where they've got a voice in their health and healthcare,” Batra stated. “Twenty years ago, patients would show up at the doctor, do what the doctor told them, and they’d recover. Today, patients show up and they have a real perspective and a real preference.”


Those preferences impact the course of treatment, cost, and expectations for follow-up care. The industry is seeing a far more sophisticated consumer, and with that a far more powerful consumer. Healthcare consumers are going to put pressure on the market to begin embracing this holistic view of health and wellness that Batra has outlined.


READ MORE: How Can Providers Drive Patient Empowerment in Healthcare?


Technology will also play a clear role in promoting holistic health, Batra added. Patients are ready for this, too, but the tools are not.


Patients are poised to adopt technology into their everyday lives. Smartphone adoption is at 77 percent across the country, demonstrating patients’ eagerness to interact with technology. The problem is that patient engagement technology is lagging.


“Folks are using apps and they're using data on their phones, they’re just not using healthcare apps and healthcare data on their phones,” Batra noted. “This suggests to me the apps are not very good.”


Apps, along with other patient engagement tools, may not be targeting patients in an individualized manner. Patients do not typically find utility in a tool that does not offer targeted information or insights.


Instead, technology companies need to be segmenting their tools, creating some that work for certain populations more so than others.


READ MORE: Moving Beyond the Portal with Patient Engagement Technologies


“If you're using the same app for the top of the pyramid as you are for those that are in the middle or bottom of the pyramid, and you don't see the same uptake, that would make sense,” Batra explained. “The way you have designed the consumer experience, the way you may serve up the data, the way the logic of the app, the language of the app, needs to be to resonate most meaningfully is likely going to differ across those communities.”


Should the industry overcome these challenges, a vision of holistic health and wellness is in store for patients. Moving beyond episodic care, health will be defined by “micro-therapies” given throughout the day or the week.

Given patient willingness and effective technology, these nudges will help prevent disease progression before an illness is even symptomatic, avoiding a costly and complex health problem.


“That changes the overall ecosystem because, again, the ecosystem's been established around providing care when people are not well,” Batra said. “But if we can move that curve, the organizations that make money will be those that actually enable and serve the well more meaningfully than the unwell.”


Some industry payers are already seeing that path forming, Batra said, which is causing a lot of conflicting market pressure. Payers, providers, and pharmaceutical companies are faced with dual demands of surviving in today’s healthcare structure and what Batra says lie ahead.


“The challenge you have when you're inside the industry right now is that you make money in the current structure,” he reiterated. “The ability to prepare for this next world at the same time is very challenging because you're essentially taking resources and investing away from your core, and you're putting it towards this future-state ecosystem that doesn't yet exist but that's likely coming.”


Those challenges have the potential to halt the industry’s forward trajectory, but only for so long, Batra said. At the end of the day, the power of the patient consumer will win out, albeit maybe incrementally.


“The whole world is not going to move in one uniform step in this direction,” he concluded. “But the most profitable, valuable customers will – in part because they're the most empowered, in part because they're the most health literate, in part because they have choice – will go elsewhere. When they fly, the rest will follow because what's left will be unsustainable.”

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Mieux répertorier les cancers permettrait de mieux prévenir 

Mieux répertorier les cancers permettrait de mieux prévenir  | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it

"Des Etats ont déployé de longue date des registres épidémiologiques précieux pour la santé publique. Des pays en développement veulent s’en doter."

ACCURAY FRANCE's curator insight, January 23, 7:25 AM

Des Etats ont déployé de longue date des registres épidémiologiques précieux pour la santé publique. Des pays en développement veulent s’en doter.

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How Online Medical Info Impacts Patient-Provider Relationships

How Online Medical Info Impacts Patient-Provider Relationships | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it
Ninety-seven percent of providers said online medical information leads to misinformed patients, impacting the patient-provider relationship.



November 19, 2018 - The slew of online medical information is impacting patient-provider relationships, according to a new survey from Merck Manuals. 


The survey of 240 family physicians found that patients are increasingly accessing online medical information and self-diagnosing using that information.


This is resulting in increased patient-provider interactions, respondents said. Eighty-two percent of physicians said they have noticed increased patient phone calls to nurses’ lines as a result of medical information access.


Sixty percent of providers said they have noticed more patients coming into the office with medical inquiries informed by online research. Patients are doing online symptom searches, finding a diagnosis, and then seeking out medical help with the information they have gained, the researchers explained.


This is not the case for all doctors, however. While most doctors have observed patients seeking out “Dr. Google” at increasing rates, some say online medical research is keeping the patient out of the doctor’s office. Twenty-nine percent of physician respondents said that patients are visiting the clinic less frequently because they are self-diagnosing and do not deem a doctor’s visit necessary.


READ MORE: Developing Patient Teach-Back to Improve Patient Education


While this may seem like an attractive way for providers to reduce patient volume and cut healthcare costs, industry experts must be wary of the sources patients are seeking. A patient’s own self-diagnosis is only effective if she is consulting reputable sources.


And patients aren’t always connecting with that credible research, the survey authors continued. Ninety-seven percent of respondents said their patients are coming into the office with incorrect information.


“It’s a double-edged sword for patients and providers,” Robert S. Porter, MD, Editor-in-Chief of The Merck Manuals, said in a statement. “As patients seek answers to their questions online, it’s all too easy to be misled by sources that are not medically correct. That can have a significant impact on how patients approach appointments and what they expect from interactions with their physicians.”


For example, nearly 80 percent of respondents said online information has increased the likelihood that patients question their diagnoses or treatments.

“In some ways, it's made appointments more complicated,” said Timothy, a physician respondent from Alaska.


“Patients search their symptoms online and see the worst-case scenarios, rather than the most common scenarios, so they come into appointments with more anxiety.”


READ MORE: How VR Can Boost Individualized Patient Education, Care Experience


Healthcare professionals have little power over what information is published online, nor over whether their patients access that information. Instead, it is essential for providers to drive patient education about what online resources are credible and when the patient should defer to a physician.


“We run into problems when patients go to online sources that aren't evidence-based medicine,” said Khyati, a physician respondent from Dixon, Illinois. “But patients aren't going to stop looking up their symptoms on the Internet, so it's up to physicians to direct them to trusted sources.”


After all, online medical resources have been a boon for physicians, too. Eighty-three percent of providers said they use online medical websites to help explain medical concepts to patients. Eighty-nine percent said having access to online resources makes them feel more confident when diagnosing and delivering patient education in the exam room.


Reviewing the types of online resources providers access themselves may be a good place to start. When a provider uses a website to reinforce patient education, that provider should explain why the website is reputable and could be good for future patient use.


Additionally, providers can empower patients with the skills to determine reputable websites themselves. Merck recommends using the STANDS technique with patients:


  • Source: Does the resource cite recognized authorities and provide their credentials?


  • Transparency: Is it open and obvious whether the site’s mission is educational or commercial?


  • Accessibility: Is the site available without registration, and is there a way for users to contact someone with questions or concerns?


  • Neutrality: Is the information available purely as a resource, or does the site benefit financially from what its users do (such as buying products or visiting advertised websites)?


  • Documentation: Is the site updated when needed by recognized medical experts?


  • Security: Can users access content without forfeiting personal information?

READ MORE: Using Bedside Tablet Technology for Patient Education, Experience


“Our survey uncovered an interesting dynamic at play. While the ease and availability of online medical information instills confidence in family physicians, they believe ‘Dr. Google’ has the potential to introduce anxiety among patients,” Porter said. “The disconnect here is credibility. When reviewing medical information online, physicians can exercise a high level of discretion based on their training. It's more challenging for patients to identify medically correct sources.”


The rise in patients accessing online medical information is likely due to two key trends.


First, more websites are hosting this kind of information, making it easier for patients to access medical information and make a self-diagnosis.


Second, value-based care models are pushing for more patient engagement. As providers empower patients as the drivers of their own health and wellness, patients are seeking out more medical information.


Research indicates that patients largely understand the need for credibility when accessing an informative website. A 2017 study published in the Journal of Medical Internet Researchrevealed that patients mostly consider usability, simplicity, and source authority when looking at online medical information.


When content is easy-to-understand and navigable for patients, they are more likely to trust the website. Patients tended not to trust websites that required them to wade through troughs of disorganized information.


Additionally, being able to identify the author or presiding organization made websites more trustworthy for patient information seekers. Websites that offered contact information for the author or identified website owners and third-party contributors were perceived as more credible than those that did not.


The researchers found obvious advertising on the websites was an undesirable feature and did not instill site credibility. However, little other research was identified about the factors leading to negative patient perceptions of health information websites.


Although patients seem to be on the right track discerning credible medical sources themselves, it will still be essential for providers to check in with their patients. Providers should ask whether their patients read online medical resources, which sources they look at, and for which purposes. This will allow providers to vet these sources and direct patients to websites that are more credible.

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How Non-Clinical Staff Enable Patient Engagement, Care Coordination

How Non-Clinical Staff Enable Patient Engagement, Care Coordination | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it
Patient navigators, health coaches, and community health workers are key to patient engagement and care coordination. But what is the difference between these non-clinical jobs?
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Understanding Physician Empathy, How It Impacts Patient Care

Understanding Physician Empathy, How It Impacts Patient Care | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it
How does physician empathy impact the patient experience? What is its role in patient-provider communication?



October 17, 2018 - As the healthcare industry continues its focus on better patient experiences and higher satisfaction, physicians work to improve their patient-provider communication skills. Paramount to these skills is physician empathy, a somewhat elusive factor that few medical professionals understand.


In a general sense, empathy is defined as “the ability to understand and share the feelings of another.”


It seems natural that empathy be a key aspect of provider communication. Being able to feel a patient’s emotions will help a provider deliver more compassionate care and make the patient feel more comfortable during treatment.


But allowing raw emotions to overcome the provider is not always ideal, especially as providers aim to be objective in delivering quality care.


This raises questions about the role empathy plays in the clinical setting. How does the definition of empathy change in the medical space? Is it truly necessary to patient care? And if so, how do we teach providers physician empathy?


READ MORE: Patients Favor Compassion, Clinician Empathy Over Low Doc Costs


The definition of empathy in the clinical sense may diverge slightly from its general definition, experts agree. Specifically, physician empathy becomes more nuanced in the clinical setting.


Many medical professionals break empathy down into different categories. Cognitive empathy, for example, refers to a physician’s ability to recognize a patient’s emotions, reflect those emotions back to the patient, and consider the emotions when making care decisions.


Affective empathy is more related to the tradition definition of empathy. Affective empathy is when providers internalize the emotions a patient feels and truly feels those emotions themselves.


Some experts argue that cognitive empathy is better suited for the medical profession. After all, providers want to do their jobs objectively, free of the emotional toll some cases may take. Known as detached empathy, cognitive empathy allows providers to recognize patient needswithout being impacted by those emotions.


However, the medical industry may consider shifting its perception of physician empathy, according to a group of researchers from the University of Chicago. Empathy is nuanced and requires both cognitive and affective empathy.


READ MORE: To Boost Patient Satisfaction, Try a Little Provider Empathy


“We found that changes in empathy during medical training are not necessarily negative—the narrative appears to be much more complicated than we initially thought and illustrates how problematic it is to rely on a single, subjective measure to evaluate a complex psychological construct,” the researchers wrote in a 2017 article published in Medical Education.


Other experts agree. In a 2002 essay published in the Journal of General Internal Medicine, researchers asserted physicians need affective empathy to guide their cognitive empathy.


“There is a long-standing tension in the physician's role,” the researchers wrote. “On the one hand, doctors strive for detachment to reliably care for all patients regardless of their personal feelings. Yet patients want genuine empathy from doctors, and doctors want to provide it.”


Cognitive empathy is not enough to create a positive patient experience, the authors continued.


“The function of empathy is not merely to label emotional states, but to recognize what it feels like to experience something,” they said. “That is why empathy is needed even when it is quite obvious what emotion label applies to a patient.”


READ MORE: Effective Nurse Communication Skills and Strategies


Of course, there are numerous challenges to having genuine affective empathy, experts have acknowledged. Providers might not think they have enough time to connect with patients, and a culture of detachment may make physicians apprehensive to become more empathic.


But many experts are beginning to believe clinicians can build genuine connections in a minute or two. And feeling affective empathy does not need to take away from quality care, the JGIM authors noted.


“Empathy does not require that physicians vicariously experience and introspect about patients' emotions,” they explained. “The physician's attention should not be unduly diverted to introspection. The whole point of empathy is to focus attention on the patient. A listener who was busy having his or her own parallel emotions and introspecting about them would have the wrong focus.”


Aside from improving patient satisfaction, physician empathy can have an impact on patient care outcomes.


Studies indicate that patients who perceive their providers as more empathic tend to get better faster and experience less aggressive symptoms.


A 2011 study published in Patient Education and Counseling showed that patients receiving care for the common cold and who gave their providers perfect empathy scores felt less severe symptoms and felt the symptoms mitigate in a shorter period of time.


A separate study published in the Annals of Family Medicine yielded similar results, showing that patients reported better outcomes when they perceived more physician empathy.


The researchers in neither of the studies suggested that the patients’ better health was a direct result of more physician empathy. Instead, positive outcomes could be tied to a higher level of overall care that comes complete with more empathy. Providers displaying more empathy could be more likely to engage in shared decision-making or to hear specific patient needs that result in better quality care.


Additionally, patients reporting perceived empathy may have initially had less severe symptoms.


Nonetheless, empathy is an important indicator of quality care and better patient-provider relationships, the literature shows, making it a stalwart in the patient-provider relationship.


Although industry attitudes toward physician empathy may be cynical, research largely suggests that does not need to be the case. Physician empathy is an entirely teachable skill.


A 2014 literature review published in BMC Medical Education revealed that interventions to improve physician empathy are largely effective. Although most of the literature analyzing those interventions is flawed, those studies that were deemed high-quality revealed improvements in physician empathy following intervention.


Sixty-six percent of the studies on empathy education reported an increase in physician empathy. What’s more, all of the “top tier” studies indicated effective empathy interventions. These results are more trustworthy, the researchers said.


However, there is still a path forward in designing empathy interventions, the researchers continued. For example, more targeted interventions for physicians who are already into their careers, as opposed to those targeted at medical students, could be effective.


“Interventions aimed at enhancing empathy among residents, fellows and physicians may be more important to ensure that patients consistently receive empathic care from their physicians,” the researchers said. “Little is known about the long-term efficacy of empathy interventions.”


Additionally, the JGIM authors assert that providers can deliver strong physician empathy so long as their medical education contains information on how to relate to and build relationships with their patients.


“One path to educating empathic physicians is by encouraging trainees to maintain their natural curiosity about their patients' lives,” the authors noted. “Doctors learn to suppress curiosity in order to take rapid, standardized histories.”


There is still very limited information regarding physician empathy and how to teach it to medical professionals. However, as value-based care further drives a need for higher patient satisfaction and better experiences of care, experts may wish to learn more about empathy’s role in the clinical setting.

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Improving Pediatric Patient Experiences with Age-Appropriate Education

Improving Pediatric Patient Experiences with Age-Appropriate Education | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it
At Boston Children’s Hospital and Children’s Hospital of Philadelphia, reducing patient fears and improving pediatric patient experiences is child’s play.


For pediatric patients and their parent caregivers, fear in a hospital is a normal thing. Young patients can experience sensory overload, parent and child are often separated during procedures, and there is the looming fear of an adverse health event.  


High anxiety can be detrimental to the pediatric patient experience, but many children’s hospitals are taking creative and effective approaches to reducing stress and improving outcomes by engaging patients in medical simulations and age-appropriate education.


For pediatric patients, the perceived threats of medical care can trigger fear and anxiety, which in turn can get in the way of effective medical care.


The concerns that patients harbor usually vary depending on the child’s developmental stage, according to the Phoenix Children’s Hospital.


Preschool aged children and toddlers usually experience separation anxiety and concerns about unfamiliar medical equipment, while school-aged children tend to fear a loss of control, the possibility of pain, and even a fear of death following a serious illness or procedure.


Teens fear separation from their peer group and a disruption in their social connections, a change in body image, or loss of control, privacy, and independence.


Medical simulations and demonstrations have proven effective for combating these concerns because they are concrete and engaging, said Brianna O’Connell, MS, CCLS, a child life specialist and program lead with the Simulator Program (SIMPeds) at Boston Children’s Hospital.


“Psychologically, we know that the ability for kids to put their hands on equipment and have control over it causes desensitization,” O’Connell explained. “It also helps creates developmental mastery and control over those items and makes patients less likely to have high levels of anxiety and more likely to be successful when they come in for a procedure.”


Successful medical simulations and demonstrations require coordinated teamwork and a commitment to developmentally appropriate materials and language.


When a child is admitted to the hospital, healthcare organizations focus on normalizing that event. They create opportunities for children to socialize and continue daily routines.


These efforts not only create more pediatric patient satisfaction, but also help familiarize and desensitize patients to their new medical environment. These efforts can start out small, with something as simple as a doctor play set that serves to empower a patient during an eventual care encounter.


“We do a lot of teaching through medical play, and this can be done at very early ages,” said Beth Donegan Driscoll, MS, CCLS, Director of Child Life Services at Boston Children’s.


“We take out a doctor's kit and expose the child to a play doctor's kit. This helps the child to understand what it's being used for and why it's being used.”


Boston Children’s also allows patients to experience a certain procedure without quite undergoing the full therapy.


Under O’Connell’s guidance, child life specialists, clinicians, and other healthcare professionals have worked with SIMPeds to develop its “Preparing You” program to address the concerns many children have when going to the hospital.


Preparing You creates opportunities for patients, parents, and caregivers to learn more about a child’s health and how aspects of treatment will fit together. All of this is done in a manner that is suitable for an individual’s developmental needs, O’Connell noted.


For example, patients with autism often have high rates of seizures, which means they must undergo regular EEGs, O’Connell said. These patients, who typically have sensory sensitivity, frequently experience high anxiety before a procedure.


“We have the ability to simulate that entire experience for them in our simulation space,” O’Connell said. “Patients can come here and have repeated exposures for desensitization so ideally they'll be more successful when it comes to actually having their EEG.”


Boston Children’s also hosts module-based simulations, or stations where patients can learn about the different steps of the healthcare process. A patient scheduled for a surgery can come in with her family and look at the entire perioperative process, from pre-op admitting to pre-op holding to getting an IV placed.


“They get to help flush the medications on the IV on a mannequin, for example,” O’Connell noted.


These efforts are targeted at reducing anxiety for the child and family, according to Kate Carpenter, MEd, CCLS III, a child life specialist at the Children’s Hospital of Philadelphia. CHOP has a host of options to help familiarize pediatric patients with certain testing environments.


The hospital has videos, booklets, and a mock MRI machine, among other tools. These props help the patient and her family understand what will happen when she receives an MRI, allows her to practice sitting still, and acquaints her with the sounds in the machine.


“By nature, children have wonderful imaginations, but we know that sometimes their imaginations can get the best of them,” Carpenter pointed out.


“Rather than having them guess about what’s going to happen in the hospital, we have instructional videos and books for patients and families to view prior to coming to the hospital. That way they can know what to expect.”


In turn, these preparation exercises can reduce preventable pain and suffering.


“We hope to reduce patient anxiety because there’s a lot of research out there that says people with higher anxiety report higher pain scores,” Carpenter said.


“Our goal is to try to reduce some of that anxiety by making those potentially painful experiences less anxiety-provoking and then ultimately less painful.”


Boston Children’s also hosts hands-on demonstrations and classes with the parent in mind, helping to allay caregiver fears and equip them with the knowledge necessary to care for their child.


“We ended up with a few different platforms that have developed out of Preparing You, and one is targeted at preparing parents and caregivers for taking their child home with new and complex medical equipment and diagnosis,” said O’Connell.


Preparing You might help a parent or caregiver treat a child who leaves the hospital with a tracheotomy or a central line, for example. Parents going home with seriously ill children will soon become responsible for that child’s care and will need adequate preparation.


“These families are going through what for many of them is the worst time of their lives,” O’Connell said.


“We're sending these kids to their homes, and instead of having a set of critical care nurses and doctors at their bedside 24 hours a day, they now have mom and dad,” she added. “That can be scary for both the parents and the patients. All of these factors are things that have to go into how we develop these courses.”


These parent-focused simulations are more efficient in delivering caregiver education than traditional caregiver education booklets, O’Connell said. Caregiver education is essential to achieving better patient outcomes and has been proven to reduce adverse events such as preventable readmissions.


When parents and other caregivers have a hands-on environment in which to learn about their child’s at-home care, they learn more quickly and more completely. Better caregiver education also results in fewer caregivers expressing fear and anxiety after using a training module, O’Connell noted.


Healthcare organizations must leverage several different players to successfully carry out a simulation program.


Simulation developers, child life specialists, clinicians, psychologists, and other pediatric experts are all essential team members.


O’Connell frequently partners with clinicians at Boston Children’s to review patient education curricula and identify areas where materials can better serve pediatric populations. The partnership between child life specialists and clinicians ensures that patients receive both the clinical and emotional support they need.


“We partner so that we have child life specialists at each of the module stations,” O’Connell explained.


“You may have a surgeon who's explaining how the spinal fusion surgery works, but there's also a child life specialist there to help interpret the language, keep an eye out for stress signals from the patients and their parents, and help bring up typical things that are helpful for coping.”


If pediatric care is a team sport, parents and caregivers are the team captains.

“Parents know their child better than anyone else in the world, so we want to start a conversation with them,” Donegan Driscoll explained.


Donegan Driscoll always asks parents about their child’s coping mechanisms, or if the child usually has a lot of questions. This will help the child life specialist and the provider to better target their efforts toward full patient and parent engagement.


“We want parents to tell us about their child.From there we can help the family create a plan,” Donegan Driscoll asserted. “We never go in there and say, ‘We think your child should have this at this time and this much information.’ We say, ‘You tell us first, and then together we'll work on a plan.’”


Parental involvement in pediatric care is important, and Donegan Driscoll ensures parents are aware of the value they bring.

Including the parent caregiver in the care team requires not only parent leadership, but strong communication and education on the part of the provider, O’Connell pointed out.


O’Connell says she uses similar techniques communicating with parents as she does children, although her discussions with parents often strike a more mature tone.


“Any time you're working with patients and families, you must individualize interventions to their needs,” O’Connell said. “You must look at how this non-medical learner, this lay person, will best learn information.”


Siblings also have to be a part of this team, according to Carpenter, the child life specialist from CHOP. Siblings might be confused by their brother’s or sister’s diagnosis, scared of the prognosis, or have trouble understanding how they themselves fit into the puzzle.


“I try to do a lot of support for siblings so they understand what is happening to their brother or sister,” Carpenter said. “They need to feel like they have a safe space to ask questions or process information that can be challenging.”


CHOP hosts Sib Shops, a program specifically designed for brothers and sisters of children with chronic illness or developmental issues that require special attention. This provides siblings with a chance to talk about their feelings and to relate to others who are going through similar experiences.


At the center of all efforts is the need to make pediatric patient experience developmentally appropriate, each of the experts said.


“In our role as child life specialists, we are the experts when it comes to talking to kids about challenging issues,” Carpenter said.


“Many times, that includes being concrete and trying to stray away from using any sort of abstract language, while also being mindful that many healthcare experiences can be very scary for kids,” she added.


“We want to encourage our staff to be very honest about what is happening, but do so in a way that is a little less scary.”


For example, when a child asks Carpenter if something will hurt, she’ll respond saying “some kids tell me this might feel like a quick pinch,” or, “some kids tell me that fluid feels like it’s warm when it’s going through the IV.”


Those are honest responses, without telling the patient the shot will throb or the fluid will burn.


For an older patient, Carpenter uses more mature, more direct, and more technical language. While she is still ensuring communication is developmentally appropriate, she is also charged with preparing this teen for adult care that is fast approaching.


“Part of my skill set is to be able to assess what patients and families need in the moment, and that requires understanding the developmental spectrum of the kids we do work with,” Carpenter noted.


Clinicians and child life specialists must be sure not to use too much abstract language, Donegan Driscoll added, especially when working with young children who often take things very literally.


Words matter, she said, and choosing the right ones is the difference between a positive, negative, or confusing healthcare experience.


“The preschooler, for example, has magical thinking,” Donegan Driscoll offered as an example. “Unless you explain things in a very concrete way, they can get confused and not understand why things are happening and if they caused something to happen.”


Donegan Driscoll always asks preschool aged children to sit on the “bed on wheels” instead of the stretcher. When a child hears “stretcher,” he hears something to do with stretching the body. A “bed on wheels” is a much better descriptor for her purposes.


“We never use the word ‘shot’ because kids can get very confused about what a shot is,” Donegan Driscoll added. “If someone gets shot in the outside world, it means something very different than if someone says a shot in the hospital, meaning a needle.”


Child life specialists and clinicians must also remember that a patient’s chronological age is not necessarily her developmental age, according to Donegan Driscoll.


“We are trained on how to give explanations to children depending on what stage of development they're at,” she explained. “Our main purpose is to meet the child where they are and to help them journey through the hospital experience.”


This, in turn, will prevent some of the consequences of frequent or prolonged hospitalization, Donegan Driscoll added, be they emotional, psychological, or developmental.


Depending on the length of stay and the severity of disease, these issues can range from regression in childhood skills to social withdrawal and isolation.


“We must ask ourselves, ‘If this child was not in the hospital, what type of skills would they be working on? What would their world look like if they weren't in the hospital?’ We try to bring that world into the hospital for them,” Donegan Driscoll explained.


At Boston Children’s, child life specialists socialize kids in the playroom, or work on developmental milestones such as object permanence or tracking.


Of course, this work can be challenging for providers, as well, said Carpenter. It can be hard to separate professionalism from the compassion needed to do her job.


“Part of being a child life specialist is being able to connect with families during some of their scariest times so that they feel safe and supported,” she noted.


As challenging as it may seem, this is a job that Carpenter says is essential to the medical profession. Healthcare leaders must talk to pediatric patients about their health and prepare them for the procedures ahead – even if those procedures are scary and tough to talk about.


“There’s often a misconception that we shouldn’t tell kids about what we would consider scary things done to them,” Carpenter said. “By telling children about the treatment, we fear we’ll make them worry about it.”


“The truth of the matter is that a lot of times kids pick up on what’s happening around them,” she concluded. “By not telling them about their health, we don’t have a trusting relationship with them and they may not feel as safe as if we were being honest.”

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Understanding Population Needs to Target Patient Engagement

Understanding Population Needs to Target Patient Engagement | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it
Target patient engagement interventions are necessary in patient panels with vastly different needs, a new Deloitte report illustrates.



October 31, 2018 - Patient engagement is not a one-size-fits-all endeavor. Instead, organizations should consider the different needs and preferences of their populations to target their patient engagement initiatives, according to a new report from Deloitte Center for Health Solutions.


There are four general categories of patients, the report contends, each with different healthcare preferences. Using survey responses from 4,530 patients, Deloitte researchers segmented patients into groups with common needs.


The biggest segment was the homesteaders, with 40 percent of patients being categorized as “reserved, cautious traditionalists.” These patients don’t have a significant propensity for engagement and are unlikely to adopt patient engagement technology on their own.


The next largest segment was the prospectors. Thirty percent of patients were deemed as somewhat engaged and likely to use healthcare technology. These patients largely rely on recommendations from family and friends when accessing care providers.


Sixteen percent of respondents were categorized as trailblazers, or “tech-savvy, self-directed, engaged in wellness, and willing to share data.” These patients are the pinnacle of patient engagement, report excellent health, and tend to have higher incomes.


READ MORE: Moving Beyond the Portal with Patient Engagement Technologies


Finally, 13 percent of patients were segmented as bystanders, or individuals who are “complacent, tech-reluctant,” and unengaged. These patients, who are likely to be low-income, tend not to engage with the healthcare industry because of feelings of distrust and issues with other lifestyle needs not related to health.


The way healthcare providers engage these patients should depend on the specific profile, the Deloitte researchers suggested. Highly-engaged trailblazers do not need the same services as bystanders; in fact, bystanders may not even want to be on the other side of the same engagement strategies providers use for trailblazers.


Instead, organizations should work to engage trailblazers in data exchange. These individuals are the most likely to use health IT and mHealth wearables to generate their own health data, and are also likely to share this data with providers.


Providers may also wish to revamp their telehealth and other virtual health offerings. Most trailblazer patients have accessed care virtually at least once and are likely to do so again in the future, the report noted.


A better understanding of patient’s preferences when accessing healthcare can help healthcare organizations better target their programs for patients. Delivering on these high-priority items is essential for this patient population. Trailblazers are likely to switch providers if they are not satisfied with patient-provider communication or technology offerings, the report found.


READ MORE: 3 Ways to Incorporate Patient Preferences into Healthcare


It may be helpful for organizations to take similar approaches to prospector patients. These patients, which are in the second highest income group in the survey, are also willing to share patient-generated health data and engage with providers using the EHR patient portal.


These patients are also likely to use other health IT tools and try a virtual visit.

One of the most fundamental differences between prospectors and trailblazers is the reliance prospectors have on their family and friends to make recommendations about care. When seeking a new provider, prospector patients consult with their loved ones, as well was their primary care providers, to make a selection.


This underscores the importance of having a good reputation, the Deloitte researchers said. Organizations may wish to consider making partnerships with social and patient advocacy groups to continue to promote a positive reputation. Additionally, focusing on the patient-provider relationship during each encounter will spur more patients to make recommendations to friends.


For homesteaders, the largest patient segmentation, organizations should focus on offering convenient access to care. These patients are less concerned with the cost of care as they are about convenient access and ample appointment slots.


READ MORE: Patient Engagement Strategies for Young, Healthy Populations


Organizations should also lean on strong patient-provider relationships and the use of shared decision-making strategies to empower these patients.


Although homesteader patients are unlikely to pick up a health technology on their own, organizations can leverage care coordinators and other non-clinical professionals to introduce these tools to patients, increasing the likelihood of full adoption.


Finally, organizations should consider the social determinants of health and the issue of community health when focusing on their bystander segment. This population is the oldest and has the lowest income. In all likelihood, these patients are non-compliant with healthcare because they have other, more pressing healthcare needs.


Leaning on community health partnerships that address the social determinants of health could clear the path for patients to achieve wellness.

Additionally, community health partnerships will help break down the walls between patients and healthcare institutions. Bystanders largely have a distrust of the healthcare industry, casting another barrier to care. By partnering with the community, increasing visibility, and building a positive reputation, organizations can begin to build trust.


Understanding and segmenting patient populations will help organizations increase their market share of patients, the Deloitte researchers said. However, these insights go beyond improving an organization’s financial bottom line.


It will also help organizations empower their patients within the healthcare system, equipping them with the tools to improve their health.

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Developing Patient Teach-Back to Improve Patient Education

Developing Patient Teach-Back to Improve Patient Education | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it

Simply delivering patient education is not enough; patient teach-back allows providers to assess patient understanding and cement information in patients' memories.


As healthcare costs continue to skyrocket, medical professionals know that a well-informed patient is a more engaged, healthier, and less costly patient. Critical to supplementing those efforts is ensuring patients understand a care concept. 

Patient teach-back has emerged as a key strategy for supporting patient education.


Clinicians are encountering patient populations who largely don’t remember much of what their providers discuss with them during healthcare encounters. A landmark study published in the Journal of the Royal Society of Medicine found that patients usually forget between 40 and 80 percent of the information communicated during an appointment.  And almost half of what patients remember is incorrect.


In times of stress, such as when a negative diagnosis is delivered, this effect may be magnified even further.


Poor understanding of information can put patients on the defensive, reduce satisfaction, and erode trust between patients and their care providers.


The inability to remember healthcare advice is also driving up industry spending. According tothe Center for Health Care Strategies (CHCS), low health literacy and insufficient patient education can cost up to $236 billion every year.


To ensure that patients are retaining information that can keep them healthier, providers need to go beyond the basics of discussing concepts and self-management techniques.  Checking for understanding through patient teach-back methods can cement information in the consumer’s mind and raise the chances of adherence to recommended care.


What is patient teach-back, how does it help improve education, and how can providers implement this strategy effectively at the point of care?


Patient teach-back is a patient-provider communication strategy during which providers ask patients to repeat information back to them. This allows providers to assess how well they explained healthcare information to the patient.


According to the Agency for Healthcare Research and Quality (AHRQ), healthcare professionals should use the teach-back method to improve patient understanding of and adherence to care instructions.  The strategy may also decrease clinic calls and improve patient satisfaction and outcomes.


“Regardless of a patient's health literacy level, it is important that staff ensure that patients understand the information they have been given,” AHRQ says. “The teach-back method is a way of checking understanding by asking patients to state in their own words what they need to know or do about their health.”


Nurses are primarily in charge of patient education and therefore use patient teach-back more than other clinicians. However, doctors, social workers, care coordinators, and other healthcare personnel may also use patient teach-back.


Clinicians can use teach-back when communicating one-on-one with patients, and with patients’ family members or caregivers, too.


Patient teach-back is a key part of patient-provider interactions that should be used toward the end of an appointment or after introducing a new healthcare concept.

Generally, patient teach-back can be broken down into a handful of steps, according to AHRQ:


  • Summarize patient information in clear, plain language (say “high blood pressure” instead of “hypertension” or “walk” instead of “ambulate”). Using high-level medical vocabulary will not be helpful for layperson patients.


  • Ask the patient to repeat the information back in their own words.


  • Assess patient understanding. Was their response accurate? Are there areas the patient still doesn’t seem to understand?


  • Ask the patient where you can explain better, and then clarify misunderstood information.


When eliciting a patient’s response, providers should make clear that teach-back is not a test, according to the Institute for Healthcare Improvement (IHI). There is not necessarily a wrong answer, but rather information the provider needs to clarify.


AHRQ recommends providers explain that the responsibility for the patient to understand is on the provider, not the patient.


Providers should also avoid using simple “yes” or “no” questions, IHI and AHRQ both say. Open-ended questions will reveal more information to the provider and allow the provider to assess whether the patient truly understands a healthcare concept. A “yes” or “no” question will allow a patient who may not understand a concept to leave the clinic without receiving a full and satisfactory explanation.


Instead of asking, “do you have any questions?” clinicians can try saying:


  • “I want to be sure I explained everything clearly. Can you explain it back to me so I can be sure I did?”


  • “What will you tell your husband about the changes we made to your medicines today?”


  • “We’ve gone over a lot of information. In your own words, please review with me what we talked about.”


Providers should also consider their body language during this process. Being engaged, perhaps sitting at the same level as the patient instead of standing over them, will make the patient feel comfortable reiterating information. Using a caring and empathetic tone of voice instead of shaming or lecturing the patient is also important to a positive patient interaction.


Where applicable, providers should also engage a family member or caregiver who has joined the patient for the appointment, AHRQ advises. Experts assert that family engagement helps patients adhere to their care plans. Thus, ensuring family members or caregivers understand key healthcare concepts and techniques will help the patient after she has left the clinic or hospital.


Not all patients consent to their family members being present for healthcare appointments. In these instances, providers can encourage patients to share their experience with a loved one at home.


Providers can also employ patient education aids to assist in patient teach-back. Printouts can reinforce education during and after the clinic visit.


Additionally, patient education technology can help streamline the patient teach-back process. Patient education technology includes videos or digital modules that teach patients about certain healthcare issues. Some organizations have started using patient education technology to streamline provider workflows and ensure continuity of education throughout the entire hospital or clinic stay.


After using the patient education technology, providers can circle back with patients to check patient understanding. Using the same open-ended questions, providers can elicit patient feedback on the patient education technology, ensuring patient understanding.


Patient teach-back is a key patient-provider communication strategy. If an organization implements a patient teach-back program throughout the clinic or hospital, it may be a significant workflow change. After all, providers already struggle to make enough time for patient relationship-building between their clinical and documenting duties.


Implementing patient teach-back as a patient education strategy will require strong provider buy-in. To achieve a high level of engagement from staff, organization leaders will need to communicate with their providers.


AHRQ recommends organizations begin by electing a provider champion for the teach-back strategy campaign. This champion can serve as a liaison between providers and leadership, help educate colleagues, and address other problems clinicians have with the workflow change. These advocates may also be able to negotiate room in provider schedules to allow for the workflow shift where necessary, AHRQ says.


Next, organizations should train all members on the teach-back method as outlined above. This will require leaders to determine how and when teach-back will be implemented. It may be difficult to squeeze the new communication strategy into all patient interactions immediately. Instead, AHRQ suggests a more incremental approach.


For example, providers might try implementing patient teach-back with the last patient of the day until clinicians become comfortable with the strategy. This way, if teach-back causes the appointment to last longer than normal, it will not impact the entire day’s schedule. This should help providers gauge the pacing of their appointments going forward.


Organizations should also inform patients and family caregivers about teach-back and why they use it. AHRQ recommends organizations use handouts and office signage to help patients understand this new communication method. This can help make clear why and how the strategy is implemented and that it is not a test for patients.


Once teach-back has been implemented organization-wide, leaders should evaluate and refine their strategies. Organization leaders can survey providers about the effectiveness of the strategy or areas where they need more support. This will help all providers become more comfortable with the communication method and ensure it is seamlessly integrated into patient communications.


IHI offers similar strategies. Organization leaders must approach new workflow changes with empathy for their provider staff and consistently acknowledge the work that goes into adopting a new patient-provider communication strategy.

IHI recommends leaders:


  • Build motivation by highlighting the proven efficacy of teach-back


  • Show an understanding of already time-strapped clinician working conditions


  • Be sure to confront the problem, not the person when encountering issues


  • Promote skills development


  • Build provider confidence in skills


Organization leaders should acknowledge that workflow changes are often difficult and take time. By demonstrating this understanding to providers and implementing teach-back with patience and empathy, they can more effectively support providers.


Increasingly, providers regard patient teach-back as a standard patient-provider communication strategy. In recent years, more evidence has emerged to support that viewpoint.


A 2015 article published in the Journal of Communication in Healthcare found that teach-back improves patient comprehension of post-discharge care instructions among patients with limited health literacy.


The researchers compared an intervention and control group of patients and found that patients had better comprehension of their post-discharge care instructions after experiencing teach-back. However, teach-back did not have a statistically significant impact on patient satisfaction or whether the patient believed she understood her post-discharge care instructions.


A 2016 literature review of patient teach-back studies found that the method improved patient self-care habits, increased adherence to self-management, and enhanced disease-specific knowledge for patients with a chronic illness.

Although researchers have largely found that patient teach-back can empower patients with more knowledge about their health, the data on teach-back and patient satisfaction is less conclusive.

The above-mentioned studies indicate that teach-back has little statistically significant impact on patient satisfaction or HCAHPS scores.


Other studies, such one presented at the Sigma Theta Tau International Honors Society for Nursing 2018 conference, found that scores for the medication education questions on HCAHPS improved, but scores for few other questions improved.


Nonetheless, organizations advocate for the communication strategy because it can improve patient understanding of a condition and empower patients in self-management. According to research cited by AHRQ, patients prefer the teach-back method to supplement provider communication and better understand their own health.


As the healthcare industry continues to tackle the issue of chronic disease management and patient empowerment, they must ensure patients understand health information. Supplementing patient education efforts with patient teach-back allows providers to determine patient understanding and enhance education in key areas.

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Why providers need to consider patient perspective when addressing diagnostic errors | FierceHealthcare

Why providers need to consider patient perspective when addressing diagnostic errors | FierceHealthcare | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it

Diagnostic errors are a significant contributor to patient harm. To address the problem, providers need to spend more time listening to patients’ experiences, according to a new study.


Researchers examined data from 465 patients who reported a diagnostic error between January 2010 and February 2016. From those reports, they identified 184 different “narratives” for how patients experienced those errors.


These narratives, according to the researchers, can flag areas providers should target in patient safety efforts. 


“We really encourage bringing patients into the discussion on patient safety,” lead study author Traber Davis Giardina, Ph.D., a postdoctoral fellow at the Center for Innovations in Quality, Effectiveness and Safety at the Michael E. DeBakey VA Medical Center, said at a briefing last week. “Their experiences really have so much to offer.” 


RELATED: To reduce diagnostic errors, providers should start with radiology 


The researchers estimate that 12 million people are impacted by a diagnostic error each year, accounting for between 6% and 17% of adverse events for inpatients. That provides a large database to use to identify potential ways to address the problem—but, such errors are also underreported.


The study suggests that current reporting systems don’t work for patients, or patients perceive that they don’t work. More than half of the participants said they reported the diagnostic error, but just 9% were satisfied with the response from the providers.


The study also identified 224 instances where patients said clinicians ignored their knowledge, disrespected or mocked them, failed to provide complete and timely information or manipulated or deceived them, which can also hinder reporting.


These findings have implications for medical training and current processes, the researchers said.

Gathering data from patients should be built into safety programs. Vanderbilt, for example, codes patient and family complaints into its records.

“Patients’ experiences can supplement existing report systems,” Giardina said.


RELATED: Diagnostic errors, opioid safety top ECRI’s patient safety priorities for 2018


Policymakers at the national level should consider new initiatives, such as accreditation programs, that incentivize this data gathering.


Issues with communication should be addressed by updating medical curricula and by offering continuing education, according to the study. Communication training can help doctors provide information to patients in a way that’s most useful and can also mitigate their expectations.


Professionalism and bedside manner should also be a piece of these training protocols, according to the study."

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ETP : Les patients voudraient en savoir un peu plus sur leurs médicaments

ETP : Les patients voudraient en savoir un peu plus sur leurs médicaments | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it

[UK study]

"Les directives cliniques c’est bien, car « cela contribue à accroître lle bon usage des médicaments », mais leur impact sur les patients n'est pas toujours pris en compte, conclut cette étude de l’université de Kent (Canterbury, UK). L’étude révèle en effet, dans la revue Health and Social Care in the community, que les patients souhaitent plus d'informations sur leurs médicaments et veulent également avoir leur mot à dire sur les produits prescrits.


Le Pr Janet Krska, expert en pharmacologie, mène ses recherches sur la lourdeur de l’utilisation des médicaments à long terme chez les patients. Avec son équipe et pour cette étude, elle a mis au point un questionnaire, le « Living with Medicines Questionnaire » ou LMQ qui permet d’évaluer le poids des traitements sur la qualité de vie. Le questionnaire couvre 8 thématiques, la relation avec le médecin traitant, les principales interférences des traitements avec la vie quotidienne, le manque d’efficacité thérapeutique, les effets secondaires et indésirables, les observations générales, le coût et l’absence d’autonomie. L’analyse des données de 684 répondants montre que :


  • les patients qui prennent le plus grand nombre de médicaments qui sont aussi ceux qui subissent le plus d’effets indésirables sont aussi ceux qui souhaiteraient être mieux informés ;
  • curieusement, les patients plus âgés estiment que l’utilisation de médicaments réguliers est moins lourde que les patients plus jeunes, même s’ils consomment plus de médicaments ;
  • plus d’un quart des usagers interrogés souhaitaient obtenir plus d’informations sur leurs médicaments et avoir davantage leur mot à dire sur les médicaments prescrits ;
  • une proportion similaire s’avère préoccupée par le prix des médicaments ;
  • plus 50% sont préoccupés par les effets indésirables à long terme ;
  • environ 11% se déclarent non satisfaits par l'efficacité de leur traitement ;
  • entre 10 et 16% regrettent que leur traitement interfère avec certains aspects de leur vie quotidienne ;
  • 30% déclarent même que « leur vie tourne autour des médicaments » ;
  • 16% regrettent que leur médecin n’ait pas écouté leur opinion sur les médicaments ;
  • 11% que leur médecin ne prend pas au sérieux les préoccupations concernant leurs effets secondaires.


Les directives cliniques sont une bonne chose, conclut le Pr Krska mais il existe un énorme besoin d’éducation des patients, et des professionnels de santé. On retient en effet et à nouveau, un manque d’écoute du médecin lors de la prescription.



Source: Health and Social Care in the community 30 July 2018 DOI : 10.1111/hsc.12624 Patient experiences of the burden of using medicines for long-term conditions and factors affecting burden: A cross-sectional survey

Plus sur Exercice Pro et Médecin Blog


Cette actualité a été publiée le 12/11/2018 par Équipe de rédaction Santélog

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Social POV: Facebook for Patient Engagement –

Social POV: Facebook for Patient Engagement – | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it

"Since its launch in 2004, Facebook has quickly become the most ubiquitous social media platform. From its early days of connecting students on college campuses, Facebook honed its connection-making skills to become one of the easiest ways for people to connect online. In the past few years, it has become apparent that Facebook offers particular value for patient communities. But can pharma be successful in using Facebook for patient engagement?


 What is Facebook Used For?

Facebook’s unique appeal might be that it offers a mix of what other social media platforms offer. For example, you can share text, but without Twitter’s character limits. You can share images and videos as you would with Instagram and YouTube. Unlike the other social platforms, however, you can do all of these things in one place. Just like the average Facebook user, patients and caregivers are using the platform to share updates with friends and family, using text, images, and video.


But patients also turn to Facebook for more important purposes. Foremost is the ability to connect to others who understand. Facebook serves as a kind of virtual support group for people who may feel lonely and isolated as they deal with a health condition. Patients use Facebook to learn from patient leaders who have been through what they are going through. Many look to their patient peers for a real, unfiltered look at what a particular medical procedure is really like, or to get an idea of what kind of side effects to expect from a new medication.


Of course, it’s not ideal that patients are seeking medical advice from other patients rather than from their doctor. In many cases, the patient perspective simply serves to augment what they are hearing from healthcare providers. As appointment times continue to shrink, many patients leave the doctor’s office with questions unanswered. Some might not feel comfortable asking their doctors certain questions.


Patient influencers who are active on Facebook groups can fill that gap. This is a responsibility that patient leaders take seriously. They seek to educate and inform whenever possible. This includes being careful to weed out fake news and to manage the overall tone of the group. Kristal Kent, who leads a group for people with fibromyalgia, points out the vital role of group administrators. “The admins of the groups set the tone, whether positive or negative,” Kent says. “Admins have a lot of control over which way a group goes.”


Ultimately, patient communities on Facebook are less about medical advice and more about fostering a safe space for patients to process their experiences together. Whether they are struggling to get a diagnosis, dealing with the ramifications of a new diagnosis, or just handling the daily ups and downs of life with a health condition, Facebook groups let them work through their feelings. It’s a place for patients to feel understood and supported — something they may not feel very often in “real life.” Illness affects every area of a person’s life, from dealing with loved ones to handling new financial stressors. Peers can offer insight and support.


Patients use Facebook to share and discuss health information. They may make public posts from their personal pages, either something personal or sharing a link to an external resource. The private message feature is well-used by patients communicating with one another. Some patient influencers have Facebook pages where they share relevant info and foster engagement.


A WEGO Health behavioral intent study found that Facebook can even impact health decisions.


The group functionality may well be Facebook’s most important feature for patients. As Mark Zuckerberg described in 2017, for some users, groups are particularly meaningful. These are “groups that upon joining, quickly become the most important part of our social network experience.”

Who Uses Facebook?

Both men and women are active on the platform, and there are users across all age ranges from 13 to 65+ years. The 25–34 age group remains the largest group using Facebook, but the demographics are tending to skew a bit older each year.


As Facebook grows, the overall demographic spread is changing. — source


It’s hard to quantify the number of patients and caregivers using Facebook, but there are over six million health-related groups on Facebook, totaling more than 70 million members. There are groups for specific illnesses, groups that cater to the newly-diagnosed, groups for caregivers or loved ones of patients, and groups for patients using a particular therapy. A group for patients taking methotrexate, for example, has nearly 10,000 members. Patients frequently unite over their shared therapy, almost like an exclusive club.


In most industries, there’s an expectation that every business has at least some kind of presence on Facebook, and healthcare is no exception. For pharma, there will often be both a corporate presence and an additional presence for individual therapies. In most cases, patients expect to see pharma and other healthcare organizations show up on their Facebook feeds and may even be eager to engage. For some patients, though, the presence of pharma can feel like an intrusion. This may be one reason why many patients choose to spend most of their Facebook time in closed groups and using private messages.

What About #DeleteFacebook?

It’s been hard to miss the uproar over some of Facebook’s data security scandals. There were trending hashtags and think pieces across the web, urging people to quit the platform altogether. Recent data shows that Facebook’s seemingly unstoppable growth has stalled, at least in the North American and European markets. Many users did indeed cut Facebook from their lives or have made a conscious effort to use it less. Others who chose to stay have made adjustments to their privacy settings.


Some Facebook users are changing their relationship with the platform. — source


For most patients, it’s not that simple. Like a lot of people who chose to stick with Facebook, many patients have taken steps to shore up their privacy settings. Even before these latest security concerns, many patient influencers stepped up to make sure their group members are aware of privacy controls and how to use them. This is especially relevant for health conditions that might be more sensitive in nature.


Hyperhidrosis patient leader Maria Thomas urges those in her community to “practice due diligence and don’t assume that anything you say in a private group or on a page will remain private.” Despite these privacy concerns and potential risks, Thomas stresses that “the use of Facebook to bring awareness and support to those who need a voice can’t be understated.”

Patient leader thoughts on using Facebook for patient engagement

While some patients are understandably frustrated with Facebook, the overall landscape of patient users on the network remains active and engaged. This may be largely because there is currently no viable alternative offering the same functionality and flexibility.

According to group admin Melissa Adams VanHouten, a gastroparesis Facebook group considered trying to create a similar community off the platform, but the idea wasn’t well-received. After explaining that many of the group members weren’t particularly concerned about privacy, she concluded, “I think it caused our members to think about the value of Facebook and how they would hate to lose access to it or try to ‘rebuild’ on another site.”


While VanHouten’s group is thriving and continues to grow, her story isn’t necessarily a universal one. Casey Quinlan describes a once active BRCA breast cancer group as being a “ghost town” now. She goes on to say that she would never start a group on Facebook today given the company’s business model, which thrives on user data.


Dave deBronkart points out that Facebook’s “only advantage is that everyone is already there.” While this is keeping a lot of patients on the platform, it might also be a big vulnerability for Facebook and a big opportunity for someone else. If a viable alternative existed that offered patients everything Facebook does, plus more reason to trust their data security practices, the exodus many expected back in March may yet come. The current reality, however, is that Facebook is still the best game in town for many patients. They remain active and continue to find a great deal of value in engaging on the platform.

Facebook: Best Practices for Pharma Brands

To meaningfully engage with patients on Facebook, consider the following:


  • Are you adding value to the patient’s life? You can do this through education or entertainment. The goal is for the content to inspire engagement. Since you now know that many patients are using Facebook to seek information about health topics, can you help patient leaders in their quest to ensure their communities have the best information?


  • Whenever possible, be transparent. Many patients are on high alert after data breaches on Facebook and elsewhere. Transparency about how you use and protect patient data can be a good way to build patient trust.


  • Show off your authenticity. A good way to showcase your authenticity is to offer a look at the human side of your brand. Consider highlighting your employees or your efforts to help a charitable cause. Are you striving to be patient-centric? This is a case where show works better than tell. If patient centricity is a core value, let patients see this in action.


  • Show off your empathy skills. To show empathy, consider inviting patient influencers to work with you. Feature real patients whenever possible. Invite and then showcase user-generated content. There are case studies showing that patient leader social media ad creative for brands outperforms traditional creative by a significant margin.


  • Be careful with regulatory restrictions. Social media engagement for pharma is something that should never be entered into without careful thought. It can sometimes be a tall order to stay within regulations while also being transparent, authentic, and empathetic.


  • Interact meaningfully. When patients start to engage with you, it’s important to engage with them. Standard social media practices apply. While you should try to respond quickly, it’s vital to use the same thoughtfulness here. You don’t want to risk being tone deaf or insensitive.

Facebook is still where the patients are.

Time will tell what the future of online patient communities will look like. But for now, Facebook remains king. Patients are active and engaged and think of their Facebook experiences as quite meaningful, especially through participation in patient groups.

One of the keys to success on Facebook for pharma brands and other healthcare organizations is to foster authentic relationships with patients. A great way to do this is to ask for help from patients who already have the trust of their patient communities."


This article was originally posted at WEGO Health.

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2018 Healthcare Literacy in Research Conference –

2018 Healthcare Literacy in Research Conference – | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it

2018 Healthcare Literacy in Research Conference


I attended the tenth annual Healthcare Literacy in Research Conference in DC last week as a PCORI Ambassador. As is my habit, when I go to conferences I think, So what? How does this help lay people navigating health and illness?


What is literacy anyway? Ability to read and write? No, that’s not enough. Maybe it’s more. Keywords may include: understand, communicate, useful, culture. Understand whom? People understanding professionals? Professionals understanding people? Who communicates? People, communities, professionals communicate with each other. Communicate what? Useful knowledge about illness, health, or life? Or all of it? In a cultureof doctors, nurses, hospitals, and clinics? OR culture of people and communities?


So, at the conference, I was looking for co-produced research (researcher and patient partners) about lay people, professionals, and communities understanding each other to increase useful knowledge about less illness and best health.

Here’s a sample of the best of what I heard and learned.


  • Family literacy programs: A call (again) for health literacy in partnerships with adult basic education: In search of ‘new oil’ and ‘new lanterns.’ Maricel Santos. The adult literacy world and public health need to spend more time in each other’s worlds. The goal is not to make things simple, but to make them understood. Literacy existing in the context of life helps literacy matter. Here is an article by Santos. Nice.


  • One of my favorite posters, Helping Consumers Choose and Use Health Care. Stephen Rush. Readable, large font, high contrast (unlike many posters which are small font, low contrast at a literacy conference). Very practical. Introducing Just Plain Clear Glossary (justplainclear.com)


  • Digital Literacy in an Urban Cancer Population: Who are we leaving out? Alison Petok, Sidney Kimmel Cancer Center, Thomas Jefferson University. My 2 cents: In spite of the literature saying that smartphone use is on the rise and that many use their phones for health, the distribution of internet access is variable across demographics and the proportion of those using a health app more than twice is low. This poster describes this variation in more detail and describes hosting workshops to increase comfort with using portals and health apps. My mom used to annoy me. I was her personal help desk. I suggested she find a 15-year old at church, pay $10/hour, for her personal help desk. She shifted from flip to smartphone and started using health apps. And stopped calling her cranky son.
  • Health Literacy in Health Systems: the association between health service providers health literacy, awareness, and attitudes toward health literacy promotion, and patient communicationDiane Levin-Zamir and Shirley Mor from Israel. Health literacy in the context of the settings of medical/patient relationship (hospital and clinic cultures), not the single focus on patient health literacy.


  • Health Literacy and Health Communication in the Social Networks of New Mothers. Tetine Sentell. Another presentation considering the context of health literacy. In this case, social networks. Where do mothers get health information about their pregnancy? (Mother, mother-in-law, friends, colleagues) Sad to say, their husbands are seldom part of that social network.


  • Communication in the Dental Clinic: Describing the role of health literacy and nonverbal behaviors. Dafna Benadof from Chile. First, love seeing dental as a study area. Dental health is a great barometer of overall health, yet, similar to behavioral health, vision, and hearing, considered separate. Second, so much of health literacy is the written and spoken word. Gestures, facial expressions figure in as well. This study looks at the similarities and differences in nonverbals between patients and professionals.


I was disappointed that I saw few co-produced studies. The research was mostly about illness literacy of lay people in the cultures of doctors, hospitals, and clinics with notable exceptions such as those above. Slowly, we progress. A valuable conference. A good use of my time."


This originally appeared on Danny’s blog.

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Doctors Urged To Tone Down Medical Jargon | KUAR

Doctors Urged To Tone Down Medical Jargon | KUAR | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it

As part of Health Literacy Awareness Month this October, doctors and other health care professionals are being urged to ditch the medical jargon and adopt plain, real-world language that will be easier for patients and caregivers to understand and remember.


As part of Health Literacy Awareness Month this October, doctors and other health care professionals are being urged to ditch the medical jargon and adopt plain, real-world language that will be easier for patients and caregivers to understand and remember.

Arkansas Public Media spoke with Alison Caballero, program director with the UAMS Center for Health Literacy, about the effort to get health professionals to break the habit of using advanced medical terminology.  


ALISON CABALLERO: To use what we call plain language, some people might refer to it as living-room language, with the patients and the community members that they serve.  Providers spend many years in formal educational programs learning medical terminology that they use feely with one another.  But sadly, when they use a lot of those same words with patients and families, the message’s intended meaning doesn’t come across fully to patients and families because we’re not familiar with that language.  We didn’t participate in that formal education.  So we’re asking providers this month during Health Literacy month to pledge to use plain language, to avoid jargon and to focus on those everyday words that all patients and community members can understand.


ANN KENDA: What are some examples of jargon that needs to be replaced with plain language?


CABALLERO: So there are many words that we could talk about that are good examples of jargon.  Some favorites of mine actually are comorbidities.  When we think about the word ‘comorbidities’, that’s not a familiar term to most people in the public, but it’s a commonly used term in the public health community and in the health care community. And it really is about people’s underlying health conditions that might not be the health condition they are being seen for at the moment, but something big that contributes to their overall health. So the person may present with the flu but perhaps that person has diabetes as well, and so that diabetes would be considered a comorbidity.  A couple of other examples of what we might consider jargon: a word like ‘terminal,’ when you talk about a terminal illness.  That’s simply an illness that a person is not expected to recover from. We hear the word ‘ambulatory’ used a lot. Go for an ambulatory visit, head over to the ambulatory clinic.  What that means is simply just walk-in or outpatient, as opposed to a hospital setting.


KENDA: Cabarello says health literacy is a two-way street.  Patients also need to be involved.


CABARELLO: When people think about going to the doctor, often times we’re so glad to get the appointment and to get in and get seen for whatever has brought us there that we don’t prepare.  And if we prepare, we really can improve the quality of the communication that happens between us and our doctors. And the way that we can do that is to really jot down, before we go, what it is that we want to get out of the visit, what our questions are for providers.  And another tip that we give to everyone is to repeat back to their doctor what they think they heard.  Often, there’s a lot of information thrown at you in a health care visit.  So if you can take a moment before you leave, to just repeat back to your doctor what you think you heard, in your own words.  I know that I’ve been that patient that’s left the doctor’s office and gotten to my car and already I’ve forgotten something that he’s said so I have to call or go back in. So if you can repeat all that back to your doctor before you leave the visit, you will leave knowing exactly what you need to do to take care of your health when you leave.



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Infographic: Empower your audiences to take charge of their health 

Infographic: Empower your audiences to take charge of their health  | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it


Health Literacy Month is communicators’ chance to educate people in ways that can help them better function and respond to life events. Consider these examples.


Wouldn’t your job be easier if consumers were as informed about health issues as you are?

They’d make better decisions, enabling you to focus on your priorities instead of dealing with rumors and putting out fires sparked by inaccurate information and “fake news.”

October is Health Literacy Month—a perfect opportunity for health care communicators to reach out to consumers about health issues.


Whether you work for a hospital, health care association, government agency, university or a community organization, your ability to educate your publics is crucial to doing your job well.


[RELATED: Join us in New York City for our Best Practices for Communicators in Highly Regulated Industries Conference.]


Health Literacy Month has been observed in October since 1999. The official website explains:

It’s about taking action and finding ways to improve health communication. Health Literacy Heroes are individuals, teams, or organizations who not only identify health literacy problems but also act to solve them. You can help by recognizing and cheering on those you consider as Health Literacy Heroes

To learn more about being a “Health Literacy Hero” (this year’s theme), click here.


Health Education Associates looks at the issue of increasing health literacy on three levels in itsinfographic . Here’s the breakdown:


  • Core health literacy focuses on “conveying understanding of concepts and on teaching basic skills that help the individual function in every situation.”


  • Engaged health literacy means “individuals are better able to act independently through increased knowledge, motivation, and self-confidence.”


  • Influential health literacy helps individuals gain “greater control over their life events and situations.”


The infographic provides a list of skills and examples that communicators and others can use to promote independence and empowerment on health care issues. Check the list out here.

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Patient-Provider Communication Falls Short of Patient Expectation


Forty-five percent of patients said they wish patient-provider communications included chats about lifestyle health and motivating factors for wellness.



October 12, 2018 - Although patient-provider communication is an essential aspect of the primary care visit, expectations aren’t quite reality, according to data from Samueli Integrative Health Programs, a non-profit healthcare advocacy group.


A survey of 2,000 adult patients conducted online by Harris Poll revealed that patients want to discuss more than their physical health during a primary care encounter. Forty-five percent of patients said they wish their PCPs asked more about why patients want to be healthy.

Ninety-two percent of respondents acknowledged that health is more than just their symptoms. Fifty-nine percent agreed that health also includes being happy, 56 percent said it includes being calm and relaxed, and 53 percent said it includes the ability to live independently.

Dig Deeper


However, those expectations aren’t being met, said Wayne Jonas, MD, executive director of Samueli Integrative Health Programs.


“Patients see their health as much more than just their physical symptoms, yet doctors aren't talking to their patients about important factors that influence their health,” Jonas explained. “A whole-person, integrative approach to health and well-being allows patients to get to the root of their health conditions, but we haven't yet made this approach a priority in treating patients.”


Fifty-two percent of respondents said they don’t talk to their providers about the factors that influence health. Instead, a majority of patients (74 percent) said their providers focus on elements of physical health such as symptoms, lab results, and treatments.


Far fewer patients and providers discuss exercise (51 percent), diet (44 percent), and sleep patterns (40 percent). And even fewer patients discuss elements of emotional health. Thirty-six percent of patients said they have discussed mental health with their providers, despite the fact that one in five patients with a chronic illness also have a mental illness.


Only 10 percent of patients have discussed spiritual health with providers.

These trends bother some patients more than others, the survey revealed. Younger patients ages 18 to 44 tend to want a more holistic approach to patient-provider communicationscompared to older patients over the age of 45.


For example, younger patients are more likely than older patients to say they don’t discuss more than physical health issues. Fifty-seven percent of younger patients said this compared to only 48 percent of older patients.


Younger patients are also more apt to say they wish they discussed those things with providers than older patients – 55 percent compared to 38 percent, respectively.


Additionally, 63 percent of younger patients said they want to discuss non-drug treatments while only 46 percent of older patients said the same.


“The current model of medicine focuses on providing pills and procedures for addressing physical symptoms and prescribing quick fixes,” Jonas noted. “But younger patients want more. They are looking for options that fit their lifestyle and personal needs. This generational shift proves that more and more patients will be seeking out ways to address the underlying causes of health.”


There are also geographic differences in approaches to person-centered health, the survey showed. People living in the Northeast are more likely to rate their health as excellent (24 percent) compared to those living in the South (18 percent) and the Midwest (17 percent).


Northeasterners also tend to discuss lifestyle factors with primary care providers (27 percent). This compares to only 20 percent of patients living in the South, 17 percent in the Midwest, and 18 percent in the West.


Nevertheless, patients remain optimistic about their health. Seventy-six percent of all patients rated their health as excellent, and 86 percent said they think they have a great amount of control over their own health. Eighty-four percent of patients said their health goals align with their life goals.


To maintain this positive view of patient health, however, providers may consider a more holistic approach to healthcare and patient-provider communication. Just as patients assert that health is more than just their disease condition, industry experts are also pointing to lifestyle as major determinants of health.


“We know from past research that some 80 percent of health and healing are influenced by behavioral and social determinants of health - factors that affect a patient outside of their medical treatment,” Jonas said. “Health starts with the person, not the disease. And we as physicians should be asking 'What matters?' instead of just 'What's the matter?' This is essential for patient-centered care.”

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Words Matter At The Crossroads Of Innovation And Dignity

Words Matter At The Crossroads Of Innovation And Dignity | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it


“Narcolepsy? I couldn’t have that. Narcolepsy is a joke about someone falling asleep while standing. That’s not me.”


I don’t know where my (mis)perception of narcolepsy came from, but 11 years ago, I was shocked to learn that the mysterious symptoms I’d experienced for five years were coming together under “narcolepsy” — explaining my knee-buckling laughter, realistic hallucinations around sleep, and excessive sleepiness.


At age 24, I was diagnosed with type 1 narcolepsy while in my second year of law school. I started treatments, which were improving my symptoms, but didn’t erase them and had significant side effects.


At the time, I didn’t like when people laughed at my narcolepsy, but I didn’t yet understand how these misperceptions played a role in delaying diagnoses and perpetuating stigma. Over the past decade, I’ve been on a quest to open people’s hearts and minds to the real narcolepsy and empower others. I’ve shared about narcolepsy everywhere from a Congressional briefing to a published memoir to dating apps and on Lyft rides.


From the front lines, I can report this: Words matter. In my current role, I train people with narcolepsy on sharing their story effectively via writing and speaking. In this program, our advocates learn to use person-first language (“people with narcolepsy”) instead of disease-first language (like “narcoleptics” or “narcoleptic patients”) along with neutral language (“living with” or “diagnosed with”) instead of superfluously emotionally charged language (like “crippled by,” “afflicted by,” “victims,” or “sufferers”).


We explain that it is OK to self-identify with emotionally charged terms in describing their own experience, but that these guidelines are especially important when speaking about groups of people beyond themselves. Using neutral language is important for accuracy and credibility, since narcolepsy affects each person differently, with a very wide range of circumstances and experiences.


None of this is rocket science. These recommendations are in line with CDC’s recommendations on communicating about people with disabilities. They are based on a scientifically established phenomenon that these word choices make a meaningful difference in how others shape their beliefs toward certain groups like those living with health conditions. Likewise, we’ve made progress in the research field, with the journal SLEEP adding these recommendations to the author guidelines. Yet recently I was preparing a blog post about the fantastic drug development underway for narcolepsy and was startled to find that many of the drug development descriptions of narcolepsy used emotionally charged, disease-first, or disempowering language, the same choices we tell our advocates not to use.


I focused my legal education on rare disease drug development, and I understand how language helps establish unmet needs and urgency. Plus, I feel the urgency for innovation in my body daily, and I am extremely grateful to companies investing in narcolepsy. This is not a slight on them, as I’ve seen similar language on FDA web pages.


However, this made me wonder: To be “sick” enough to deserve advancements urgently, can I be “a person with a serious condition” or do I need to be a “patient suffering” to biblical proportions? When we speak about people with chronic conditions, could the individuals who urgently need improved treatments be the same people looking to find a way forward in the current world, hoping for jobs, partners, fulfillment, and human dignity?


How might we come together for a meaningful discussion on language with the FDA, drug developers, people with chronic conditions, and health communications experts? If what research suggests is true, that words matter in helping society foster empathy instead of socially distancing themselves, then perhaps we could find neutral, empowering language that still establishes unmet needs and urgency.


This guest column appears as part of a collaboration with Inspire, a million-member healthcare social network that helps life sciences companies connect with patients.

JULIE FLYGARE, J.D., is president & CEO of the nonprofit organization Project Sleep and the award-winning author of Wide Awake and Dreaming: A Memoir of Narcolepsy.

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SOINS INTENSIFS : Pourquoi la prise de parole des patients et leurs familles est essentielle

SOINS INTENSIFS : Pourquoi la prise de parole des patients et leurs familles est essentielle | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it

[USA study]

"La prise en charge en unité de soins intensifs n’est pas une expérience anodine, ni pour le patient, ni pour sa famille. Et, au-delà de la technicité voire de l’urgence de la prise en charge, le bien-être du patient et de ses proches est un facteur décisif de la qualité des soins. Cette étude du Centre médical Beth Israel Deaconess (Harvard, Boston) qui a regardé les attitudes des patients et de leurs familles face à une telle expérience, en unité de soins intensifs (USI), montre toute l’importance de la latitude qui leur est laissée par l’équipe soignante pour s’exprimer, librement, sur leurs préoccupations concernant les soins. Cet aspect de la relation soignant-soigné apparait tout aussi essentiel que la coordination au sein de l’équipe pour les résultats de santé.

De précédentes études ont montré que lorsque tous les membres de l'équipe de soins cliniques communiquent et se « sentent à l'aise », la performance de l'équipe s'améliore. Cependant, la connaissance approfondie des souhaits des patients, de leurs antécédents médicaux et des réactions de leurs familles participe à une offre de soins plus efficients car centrés sur le patient. Les patients et les familles doivent donc aussi « se sentir à l'aise » de faire part, à l'équipe médicale, de leurs préoccupations concernant les soins. Cette étude a regardé de plus près cette opportunité pour les patients et leurs proches à s’exprimer en temps réel dans le contexte de l'USI.


Les chercheurs cliniciens du Beth Israel Deaconess Medical Center (BIDMC) ont interrogé des patients et des proches ayant récemment vécu une hospitalisation en USI sur leur capacité d’exprimer alors leurs volontés et leurs souhaits aux soignants. Précisément l’équipe a interrogé 105 familles de patients admis en USI d'un hôpital universitaire de juillet 2014 à février 2015 ainsi que via Internet, un panel de 1.050 participants ayant récemment fait l'expérience de l'USI. L’analyse montre que :


  • 50 à 70% des membres de la famille d’un patient en USI ont hésité à exprimer leurs inquiétudes sur les situations ou décisions de soins en particulier sur l’aspect sécurité ;


  • La crainte d'être qualifié de « fauteur de troubles », de ne pas savoir à qui s’adresser, et l'acharnement thérapeutique sont les raisons les plus fréquemment invoquées pour expliquer cette hésitation ;


  • En revanche sur d’autres sujets moins « compromettants », dont les prescriptions médicamenteuses, près des 2 tiers des patients et de leurs familles déclarent se sentir très à l'aise pour s’exprimer ;


  • mais seulement un tiers des répondants osent exprimer une inquiétude concernant l'hygiène des mains ou un désaccord, avec l’équipe soignante, sur une attitude de leur proche hospitalisé (agressivité du patient, par exemple).


L'expression orale est un élément clé de la culture de la sécurité : pourtant l’étude révèle une difficulté pour la majorité des patients et leurs familles à prendre la parole au cours un séjour en USI. Pourtant, dans un tel contexte de soins intensifs, les familles peuvent détenir des informations précieuses pour les cliniciens. Elles sont aussi souvent les premières à détecter un changement dans l’état clinique du patient. Les familles devraient donc être encouragées à exprimer leurs préoccupations.


Ces résultats soulignent la nécessité d'aider explicitement les patients et les familles à s’exprimer en temps réel y compris sur les « erreurs perçues », ce qui pourrait améliorer la sécurité des soins, relèvent les auteurs. Donner ce droit à la parole aux patients et à leurs familles constitue une intervention relativement peu coûteuse et pourtant qui pourrait améliorer considérablement les résultats pour les patients et leur famille.

« S'assurer que les cliniciens écoutent les patients et les familles quand ils parlent peut aussi aider », suggèrent les chercheurs."



Source: BMJ Quality and Safety Jun 2018 DOI: 10.1136/bmjqs-2017-007525  Speaking up about care concerns in the ICU: patient and family experiences, attitudes and perceived barriers

Plus sur les Soins intensifs


Cette actualité a été publiée le 4/10/2018 par Équipe de rédaction Santélog

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I became an NHS doctor at 42. It's the best thing I've done | Society | The Guardian

I became an NHS doctor at 42. It's the best thing I've done | Society | The Guardian | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it


"I gave up a career in advertising after my newborn son became ill and received amazing care.


People often wonder what life would be like if they could start over: what path they would take, what career they would choose. Ten years ago I did just that. I’d worked in the commercial sector all my working life, building brands for household names such as Speedo and Nike. But it wasn’t until my newborn son became very ill that I had the courage to change trajectory. Taking perhaps the biggest risk of my life, I quit my job and decided to pursue an ambition I’d held since school: a career in medicine. I’m now a newly qualified doctor working in A&E in London. I’m also in my 40s.


Our son became severely ill soon after birth. Admitted to St George’s hospital and requiring specialist input from multiple clinical teams, it became clear within the first few days of his life that he would face complex and lifelong challenges. I can’t even begin to describe the sheer physical stress and emotional turmoil of those first few weeks. The only constant was the kindness and compassion shown by the incredible team of clinicians looking after our son.


Interacting with those professionals day in, day out reignited a passion in me that had long been buried. So when I stumbled across the hospital’s medical school, I went in and found out the upper age limit for applying. To my surprise, there wasn’t one.


In that moment, standing in the dark back corridors of St George’s hospital, I decided to become a doctor. Not only for my son, in honour of the amazing care he had received in his short but difficult introduction into the world, but also for myself, and the lessons I’d learned from years of working with top athletes – to keep pushing, and to never have any regrets.


Was I prepared for life in the NHS? Absolutely not. Never have I worked so hard for so little financial reward and, for most of the time, with so little support. Like many first-year doctors, I found myself flying solo just weeks after graduation, working three weekends in four, holding the bleep on call, suddenly responsible for hundreds of patients, many of whom were very sick.


I found the leap from medical student to doctor a tough one, and I continually admire the way my younger colleagues, many still in their early 20s, cope with the pressure. Entering medicine as a mature student has brought its own set of challenges, but has also helped me navigate some of the trickier aspects of the job. From having difficult conversations with patients to making critical decisions on no sleep, life experience has given me some resilience to the stresses and strains of life on the ward.


Working in the NHS the past four years has made me realise just how complex delivering world-class care can be, but also the myriad opportunities to make it better. This is where I hope to make my mark: to use skills and insight from my former career to improve current ways of working. In the retail sector we were constantly striving to enhance our customers’ experience. Why shouldn’t the same principle apply to the NHS. Alongside my clinical work I’ve chosen to explore how digital technologies can create a more patient-centred system, improving access to NHS services and streamlining the patient journey. It’s why I think it’s so important to embrace diversity in medical schools, and to encourage those – like myself – who may be older, or from a non-scientific background, to apply. If we don’t, we risk stamping out the creativity and innovation that could be key to its survival.


At 42 years of age, I couldn’t be happier to finally call myself a doctor. Despite the long hours, lack of sleep and endless workload, I feel privileged to be able to help others, like the NHS has looked after – and continues to look after – my son. It’s the best thing I’ve ever done."

VAB Traductions's insight:

"Alongside my clinical work I’ve chosen to explore how digital technologies can create a more patient-centred system, improving access to NHS services and streamlining the patient journey. It’s why I think it’s so important to embrace diversity in medical schools, and to encourage those – like myself – who may be older, or from a non-scientific background, to apply. If we don’t, we risk stamping out the creativity and innovation that could be key to its survival."

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Libraries, public health work together on community health: Settings serve as community hubs

Libraries, public health work together on community health: Settings serve as community hubs | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it


Lindsey Wahowiak
The Nation's Health October 2018

When it comes to finding the best health information available, getting a blood pressure check or even finding a safe, cool place to spend an afternoon during a heat advisory, many people do not turn to their doctor or health department. In the U.S., they visit their local library.

In 2015, Americans stopped by their libraries more than 1.39 billion times, according to the Institute of Museum and Library Services. In comparison, they visited health care professionals 990.8 million times, according to 2015 National Ambulatory Medical Care Survey data. The Pew Research Center in 2016 reported that 38 percent of people using libraries did so to seek out health information.


As people are more likely to visit their library than a doctor, health advocates have an opportunity to reach people where they live and learn. Libraries are free, accessible to everyone and are key points of community engagement — making them the perfect partner for public health programs and education, according to research published in May in Preventing Chronic Disease.


In the last year or so, news reports have detailed how libraries are training their staff on how to use naloxone, part of efforts to curb the opioid surge in the U.S. But the truth is librarians and library staff have been on the frontlines of public health for years.


“One of the best approaches that public libraries in particular have been taking over the last 10 years or so has really been working on community engagement,” said Monique le Conge Ziesenhenne, PhD, MLIS, president of the Public Library Association, a division of the American Library Association, and director of the Palo Alto City Library in California.


Health programming is popular at many local libraries. At the Queens Library in New York City, two full-time staff have backgrounds in public health, and in 2017 organized 600 health events across the library’s 53 locations. They do not work alone: The library has built partnerships with local hospitals, health centers and other organizations to offer programs from prenatal classes to sessions on cancer and Ebola to family-building programs for lesbian, gay, bisexual and transgender people.


The library is also a trusted resource in many communities. About half of Queens residents are immigrants, and the library works to ensure resources are available that meet each community’s needs, said Tamara Michel, MPH, the Queens Library community health coordinator.

“Public libraries are often people’s first point of access” into a community, Michel told The Nation’s Health. “(Library programs offer) really meaningful interactions with otherwise difficult-to-reach populations.”


Libraries are particularly suited to serve certain high-risk populations, including very young children, seniors, teens and people who are homeless, have disabilities, are incarcerated or have an addiction.


“Libraries are a safe place to get information, especially if you don’t have access in other ways,” Kt Zawodny, MLS, programming and outreach librarian for Anne Arundel County Public Library in Maryland, told The Nation’s Health. “Many people have internet at home or a smartphone in their pocket, but some of our most vulnerable people don’t. I used to work in a library near a hospital and we were often the first place people stopped after an overwhelming diagnosis — particularly seniors who aren’t comfortable using computers.”


Libraries can offer targeted programming for such populations — for example, the Palo Alto library addresses high suicide rates in teens by offering extra programming during finals week at local high schools, including staying open late just for teens, providing therapy dogs for a comforting presence and announcing frequent break periods to keep kids moving. The New York Public Library in New York City announced in August its Grow Up Work Fashion Library, a free lending library of professional accessories including neckties, briefcases and handbags, available to job seekers and others.


The Meridian Library District in Meridian, Idaho, checks out bicycles and conducts a regular exercise class for seniors, Fit and Fall-Proof. And some California libraries have partnered with local departments of education to continue lunch programs for kids during the summer.


In Anne Arundel County, library staff work beyond the walls of the library, leading its Open Book Family Reading Club at the Ordnance Road Correctional Center. The club allows incarcerated parents and their children to bond while reading together.


Zawodny said she is excited to see the library’s mental health resources grow. The library offers a Teen Tough Topics bookmark offering teens discrete sources for finding information on such topics as suicide, incest, abuse or acne — without having to ask a librarian. The Anne Arundel County Department of Mental Health now partners with the library to distribute the bookmarks.


Many people still turn to librarians first when they have health questions. It is a relationship built on trust and expertise, which librarians take seriously, Zawodny said.


“While librarians aren’t health experts, we are information experts,” she said. “As a librarian in a branch, I answered many health-related questions, from getting more information about a health diagnosis, to requesting a book a doctor recommended, to looking up reviews about doctors.”


Library staff often seek continuing education to offer help accessing the best information in the most useful ways. For example, at the Queens library, Michel said the library partnered with its local Planned Parenthood affiliate to train staff on how to answer questions about reproductive health with sound science.


Helping the public gain a better understanding of health is part of libraries’ efforts to promote health literacy, or understanding of health information. But in the age of Google, sometimes the public needs a reminder of why the library remains so important, and that finding good scientific information is a skill. To counter this, the American Library Association and National Library of Medicine have partnered to offer Libraries Transform, which equips library professionals with customizable tools to raise awareness of how libraries serve their communities.


Libraries are also working to ensure that people seeking health information get the best information possible — even if they do not visit the library. In April, the National Library of Medicine hosted its first Wikipedia edit-a-thon, a nationwide event in which volunteers updated Wikipedia pages about rare diseases with high-quality sources from NLM and the National Institutes of Health. The event was so successful that a second is planned for Nov. 7 on women’s health.


Amanda J. Wilson, MSLS, head of the NLM’s National Network Coordinating Office, told The Nation’s Health the edit-a-thons are an easy way for people to support their local libraries and public health. Any volunteer can take 10 or 15 minutes out of their day to add one or two citations.


For more information on Libraries Transform, visit www.ilovelibraries.org/librariestransform. To sign up for the Nov. 7 editing event, visit www.nnlm.gov/wiki.


Copyright The Nation’s Health, American Public Health Association

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International Alliance of Patients' Organizations 2018 theme: Safe Medication and Healthcare for all.


"On Friday 7th December 2018, health stakeholders from all over the world will stand together, united in a celebration of Patient Solidarity Day (PSD). This will be the sixth year running that we have joined hands to mark the Day. On PSD 2018, IAPO members, patients, various healthcare organizations, policy-makers, academia, institutions, industry and other stakeholders will come together to call for safe medication and healthcare for all. Patient Safety is a critical global public health issue, which plays a crucial role in enabling and supporting health systems achieve sustainable and effective Universal Health Coverage (UHC) – one of the Sustainable Development Goals (SDGs).  


However, safe medicines are currently a global concern in view of increasing numbers of falsified and substandard medicines as well as medication errors. Such occurrences, marked with very personal stories and experiences of suffering from patients, represent a high global public health burden in regard to physical, psychological, and economical loss. Patients tend to believe they are receiving correct treatment, but very often they in fact could potentially be getting dangerous and harmful medicines that could not only cause more illness or/and disability but also end in death.


The third Global Ministerial Summit on Patient Safety in April 2018 and endorsement of the Tokyo Declaration on Patient Safety at the Summit showed that although health systems and their effectiveness differ from country to country, patient safety issues have very similar if not the same causes in every country. This means that if all regions and countries aim to achieve UHC, the issue of patient safety is inescapable and must be carefully considered and prioritized.


A key tenet of IAPO’s Patient-Centred Healthcare Declaration is that patients must have access to safe, quality and appropriate treatments as warranted by their conditions.  If the principle of patient safety is not properly guaranteed in health policy and practice, no healthcare system can be viewed truly patient centric. Therefore, this year’s PSD presents an opportunity to advocate for safe medicines for all by holding all stakeholders accountable on commitments they have made to achieve UHC in all countries, because without patient safety universal health coverage cannot be achieved.


We, International Alliance of Patients’ Organizations, are fully committed to advocate for patient safety through our three year strategy 2019-2021 as well as our collaborative work with the World Health Organization, including the Patient for Patient Safety Programme and the Third Global Patient Safety Challenge: Medication without Harm. Additionally, we have joined the Fight the Fakes Campaign which aims to raise awareness about the danger of fake medicines, and also gives a voice to those who have suffered personally by giving them a platform to share their experiences with the public.


Only through a multi-stakeholder collaboration can we really outline the necessary steps to tackle unsafe medicines for all as it is an issue that cuts across various levels. By coming together this Patient Solidarity Day 2018, we call on all stakeholders to develop healthcare strategies that will guarantee safe medicines for all.

Past themes

  • 2013: Improve lives through patient-centred healthcare
  • 2014: One Voice. United. Universal (Universal Health Coverage)
  • 2015: Healthcare is a Human Right
  • 2016: Leave no-one behind: patient-centred universal healthcare for all
  • 2017: Globally Empowered Patients: Power through Knowledge
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Brexit: the clock is ticking

Brexit: the clock is ticking | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it



Editor's Choice

Published 27 September 2018


"Amid the confusion and political in-fighting over Brexit, this week we publish a debate between two economists on whether leaving the EU will harm the NHS (doi:10.1136/bmj.k4014). In the absence of a definite deal, we are still no clearer about the implications for health, so here is an attempt to test some of the evidence.

Yes, leaving will damage Britain’s health, says Anand Menon, citing a smaller economy after Brexit and vastly fewer NHS staff from other EU countries. Since the referendum the number of foreign EU nationals joining the NHS has plummeted from 2500 to 200 a quarter, NHS Digital statistics show (http://bit.ly/2DtW7jM). By the government’s own analysis, the economy will shrink by about 5%, easily wiping out any gain from no longer paying into the EU budget, says Menon. Meanwhile, NHS spending will need to grow by 3.3% each year to absorb cost pressures.

Perhaps tellingly, it wasn’t easy finding someone to argue for the benefits to health in leaving the EU, but Graham Gudgin agreed. He acknowledges the twin threats said to be facing the NHS: fewer EU nationals and reduced public spending. Both forecasts have been subject to “gross exaggeration,” he argues, because “it is difficult to get a clear, credible or consistent message” from analysts. He points the finger at flawed Treasury reports and the “remain” bias of its civil servants.

So who to believe? The uncertainty is unacceptable to patients, who are alarmed at the looming deadline of 29 March 2019, writes patients’ advocate Jeremy Taylor (doi:10.1136/bmj.k4022). He sets out four key questions that demand urgent answers, the first of which is, “Will I still get access to my drugs?” Drug shortages are already affecting patients (doi:10.1136/bmj.k4040), with hospitals having problems in getting basic drugs such as diamorphine and metronidazole.

The reality of a looming Brexit is perhaps felt most keenly along the border between Northern Ireland and the Irish Republic. In a feature article, doctors, including GPs, an oncologist, and a cardiologist, relate their fears for the future of cross border arrangements covering radiology, emergency and cardiac care, and dialysis (doi:10.1136/bmj.k3941).

In June BMA representatives voted by a large majority to oppose Brexit and called for a public vote on any exit deal (doi:10.1136/bmj.k2821). Yet the profession as a whole remains largely silent on the issue. Despite Gudgin’s defence, the evidence seems to be piling up that Brexit will wreak significant damage on the nation’s health. The clock is ticking."

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Maladies non transmissibles: l’ONU appelle à des mesures urgentes 

Maladies non transmissibles: l’ONU appelle à des mesures urgentes  | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it

[ONU] - [OMS]


"Ce jeudi à 16 heures (heure de Paris) s’ouvrira à New York la troisième «réunion de haut niveau» consacrée aux maladies non transmissibles (MNT). Son objectif: alerter sur la menace que représentent les maladies cardio-vasculaires, le diabète, les affections respiratoires, les cancers, et les troubles de la santé mentale. Les MNT comptent pour 71 % de la mortalité mondiale et causent un décès prématuré toutes les 2 secondes. Ce sommet, organisé en marge de la 73e Assemblée générale des Nations unies, devrait rassembler 59 chefs d’État et de gouvernement, parmi les 194 pays présents à l’ONU. Stéphanie Seydoux, ambassadrice pour la santé mondiale au ministère des Affaires étrangères, représentera la France. Deux commissions, une constituée d’experts et une autre de membres de la société civile, présenteront jeudi le fruit de leurs travaux.


Le rapport rendu par la commission d’experts s’intitule Passons aux actes. «Il s’agit de sortir des promesses et d’entreprendre enfin des actions concrètes, commente Stéphane Besançon, fondateur de l’ONG franco-malienne Santé Diabète, représentant de la société civile pour la France. Il faut que les décideurs prennent enfin la pleine mesure du poids de ces MNT, en particulier pour les pays les plus pauvres.»


«On constate que l’aide internationale reste focalisée sur les maladies infectieuses (VIHpaludismetuberculose), or on a aussi des problèmes cardiaques, du diabète ou des cancers en Afrique, et on en meurt ! Les bailleurs de fonds, publics et privés, doivent réagir vite», interpelle Yvonne Mburu, scientifique originaire du Kenya et membre du Conseil présidentiel pour l’Afrique, fondé par Emmanuel Macron.

Taxer les boisssons sucrées

L’OMS a pour sa part appelé les gouvernements à garantir un accès équitable aux traitements et à mettre en place une prévention efficace, notamment via les «best buys», des recommandations incluant, par exemple, la taxe sur les boissons sucrées. «La France l’a mise en place et pourrait soutenir d’autres pays dans cette démarche. Faire face à l’industrie agroalimentaire est compliqué, surtout pour les États les plus fragiles», relève Stéphane Besançon.


Renforcer les systèmes de santé et promouvoir la santé des populations par la prévention et l’éducation, notamment, sont parmi les priorités définies par la stratégie 2017-2020 pour la santé mondiale de la France. «Nous mesurons à quel point les MNT sont un fardeau économique et social à l’échelle mondiale, commente un diplomate du ministère des Affaires étrangères. Ces maladies sont souvent liées à de nombreux facteurs sur lesquels il est possible d’agir. La prévention est donc primordiale.»

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COORDINATION des SOINS : Vitale en cas de comorbidités chroniques

COORDINATION des SOINS : Vitale en cas de comorbidités chroniques | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it


« Lorsque nous pensons au diagnostic, nous considérons généralement une maladie à la fois. Lorsque nous planifions sa gestion, nous faisons la même chose. C'est essentiel pour la clarté de la pensée, mais cela ne tient pas compte du fait qu'une maladie peut influer sur l'évolution d'une autre maladie coexistante », écrit le rédacteur en chef du Journal de l'Association médicale canadienne (CMAJ). Cette étude rappelle ainsi 2 évidences, l’importance de la coordination des soins, autour du patient, mais aussi son caractère crucial voire vital en cas de coexistence de de plusieurs maladies chroniques, en particulier chez le patient âgé.


D'ici 2050, il y aura 2 milliards de personnes âgées de plus de 60 ans, dans le monde. Près de la moitié de ces personnes souffrent de maladies chroniques multiples et consomment une part importante des dépenses de santé. Cependant, on manque d'approches efficaces permettant de gérer intelligemment plusieurs maladies chroniques chez ces patients. Cette vaste analyse a donc cherché à combler les lacunes en matière de gestion des maladies chroniques multiples comme le diabète, la dépression, les maladies cardiaques et autres.


Les chercheurs Hôpital général de North York et Université de Toronto ont effectué une revue systématique de la littérature publiée sur le sujet, sur la période 1990 à 2017 puis ont sélectionné 25 études pour leur analyse, dont pour la plupart des essais contrôlés randomisés portant au total sur 12.579 participants, âgés en moyenne de 67 ans. La conclusion qui s’impose est l’efficacité des stratégies de coordination des soins entre médecins, professionnels de santé et prestataires à assurer une gestion des soins de santé rapide et efficace et à améliorer la santé des personnes âgées atteintes de plusieurs maladies chroniques.

  • Un exemple, la coordination des soins impliquant la gestion des différentes pathologies, l'autogestion du patient et son éducation, ainsi que la coordination des prestataires permet de réduiret significativement les symptômes de dépression chez les adultes souffrant de dépression et de bronchopneumopathie chronique obstructive ou chez ceux atteints simultanément de diabète et de cardiopathies.


Ceci dit, l’analyse met en évidence le manque d’interventions spécifiquement axées sur la gestion des maladies chroniques coexistantes chez les personnes âgées, en particulier celles qui souffrent de diabète, de dépression, de maladies cardiaques et les maladies pulmonaires obstructives chroniques. « Parce que chaque pathologie peut constituer un facteur de risque pour l'autre, l'auto-prise en charge du patient et l’observance de l’ensemble des traitements sont 2 axes possibles d’amélioration », soulignent les chercheurs. Or les directives cliniques actuelles se concentrent généralement sur une seule maladie, de sorte que la gestion de la multimorbidité peut être complexe pour les patients et difficile pour les prestataires de santé en raison de la complexité des traitements qui se chevauchent ou des interactions médicamenteuses.


C’est pourquoi les interventions en cas de multimorbidité chronique ne devraient pas seulement se concentrer sur les aspects cliniques des soins, mais également tenir compte des priorités et des objectifs de vie et de santé des patients comme de leur bien-être social et émotionnel. Bref une coordination qui doit rester personnalisée et centrée autour du patient.



Source: Canadian Medical Association Journal August 27, 2018 DOI : DOI: 10.1503/cmaj.171391  Effectiveness of interventions for managing multiple high-burden chronic diseases in older adults: a systematic review and meta-analysis

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Cette actualité a été publiée le 25/09/2018 par Équipe de rédaction Santélog

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Is Sitting the New Patient Communication Strategy for Nurses?

Is Sitting the New Patient Communication Strategy for Nurses? | "Global patient empowerment: health literacy & education - ehealth literacy - public health promotion - narrative tools & social media - epatients - patient expertise - patient advocacy - shared health decision making " by VAB Traductions | Scoop.it


Nurses sitting down during patient communications raised patient satisfaction from the 9th to the 43rd percentile.


By Sara Heath


"April 26, 2017 - Nurses can add an easy-to-implement patient communication strategy to their tool belts, according to a recent study. Research published in the Patient Experience Journalshows that nurses who sit down when communicating with patients yield higher patient satisfaction scores.


The research team developed the strategy, called the Commit to Sit initiative, by looking at evidence-based communication approaches.


“Qualities that show active listening include being eye level, making eye contact, and undistracted conversation,” the researchers reported. “In the acute care setting, the majority of the patients are lying in a hospital bed, making sitting the most logical and non-threatening way to communicate.”

Dig Deeper


Sitting, as opposed to standing, while communicating with patients makes patients perceive that nurses are spending more time talking to them. Studies show that patient perceptions of time spent with them is tied to a positive patient experience.


The research team deployed the strategy in a 19-bed unit inside a larger hospital in Texas. The team measured initiative success using the Press Ganey Satisfaction survey, looking specifically at the overall nurse communication composite score, as well as scores for treating patients with courtesy and respect, listening carefully, and explaining concepts understandably.


At the end of the nearly seven-month study, nursing communication and satisfaction scoresrose from the 9th percentile to the 43rd percentile. While these results fell short of the research team’s goal of the 60th percentile for nursing communication, it still marked a considerable improvement, the team said.


However, the road to communication improvement was not easy, the researchers reported. In the first months of the study, researchers and nursing participants saw little to no difference in patient satisfaction, despite concerted efforts in Commit to Sit. Nurses reported sitting with all of their patients, but only 40 percent of patients and families perceived these efforts.


Midway through the study, nursing leaders prompted nurses to explicitly ask if they could sit with patients and families before starting health conversations. This gentle approach reinforced nurse efforts, the researchers found.


“Incorporating the word ‘sit’ made an impact as the feedback received during clinical leader rounds was more equivalent to the number of patients the team reported sitting with,” the researchers said. “This may be logically explained as patients make a conscious decision whether a nurse may sit with them at that time or not, increasing their ability to recollect when asked by leaders.”


Nurses also presented some resistance to Commit to Sit, especially with regard to extremely sick patients relegated to contact isolation. The researchers targeted nursing education toward safety protocol in those instances, instructing nurses to use disposable pads for sitting or to wear extra protective garments where necessary.


These findings have positive implications for nursing practice and patient-provider communication improvements, the researchers said. Commit to Sit presents a simple fix that can improve patient experience, a key factor in patient-centered care models.


“Implementing the Commit to Sit initiative provided nurses the opportunity to learn something unique about each patient to share during report to help foster relationships even through shift change,” the researchers said. “Utilizing Commit to Sit to connect with patients, demonstrating caring beyond the patient’s medical diagnosis, positively impacts the patient experience.”


Additionally, these findings are key for nurses, who play an integral role in improving the patient experience through communication. Nurses usually spend the most time communicating with patients and are in charge of alleviating patient concerns and communicating health information clearly to help patients become activated in their care.

Going forward, nurses should continue the Commit to Sit agenda, the researchers concluded. Nurses may also consider using their sitting time to learn more about their patients, building a stronger relationship that can eventually lead to higher patient experience scores."

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ENG to FR freelance translator focused on global patient empowerment through health literacy - health education - patient education - ehealth - digital health - health IT - AI & medicine/healthcare - www.linkedin.com/in/VABtraductions