"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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Public health working to fight misinformation through trust, relationships: Facts not enough

Public health working to fight misinformation through trust, relationships: Facts not enough | "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]

"Despite best public health efforts, misinformation about health can spread wildly — often faster than factual information. It is a problem public health both recognizes and is struggling near-constantly to combat.

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The Power of Words in Healthcare: A Patient-Friendly Lexicon. Top 10 List #WordsDoMatter Project | SPM Blog

The Power of Words in Healthcare: A Patient-Friendly Lexicon. Top 10 List #WordsDoMatter Project | SPM Blog | "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

"Language has a magical influence on the lives we lead, with an impact on our thoughts, emotions, and/or actions. The words we use are one of the most potent ingredients in the science of language. Words have the power to heal, guide and motivate. They can confuse, mislead, and even hurt us. The intent of a spoken word can often be misinterpreted leading to an unintended consequence. The majority of our words are a result of habit and convenience. If we follow the ripple effect of our words to understand the emotions and/or behaviors they might potentially trigger, would it force us to pause, think and perhaps communicate differently?

There are terms and phrases that those of us who work in healthcare use regularly. Some of these words have been around since the turn of the century…and others are newer and somewhat trendy. In my work with patients and their families, I have found that many would rather us skip some of this terminology in our conversations with them. I’ve captured thousands of terms in my research and I’ve been working with members of the community to identify new terms to consider, which can allow us to redesign the language we use with patients and their families in healthcare. There are words that we might continue to use in exchanges with one another as healthcare professionals, academics, researchers, advocates, etc, but this project was focused on the language we use with patients and their families.

Why?
Connection is a conversation between the patient story and the language of medicine. Words have the power to transform healthcare and if you don’t speak their language, they won’t hear you.

 

How?
Since 2016 when this project launched, 3, 842 words/phrases have been crowd-sourced where we asked “What word(s) should we stop using or limit use of with patients and/or their families? Why?”

The submissions were analyzed and the TOP 10 words are listed here based on the most common words suggested. There are plenty of other words that don’t make sense to patients and their families, but we’ll start with the Top 10 and continue to build on these.

Next Steps
The next steps are to involve the community (YOU) in the “Words Do Matter” Project with your feedback and suggested alternative terms. We will continue our current participatory co-design work with patients and their families to develop a new set of terms that can be used with patients and families. We will also conduct a few “Man on the Street” interviews to supplement this work. Ultimately, the goal is to develop a patient-friendly lexicon.

Here are the words I vow not to use with patients and their families in 2018! #newyearresolution2018

Top 10 Words (and the most interesting and sometimes humorous explanations as to why!)

Patient Engagement
The use of this trendy word skyrocketed several years ago and has led to start-ups, tools, apps, workgroups, behavior change strategies, research studies and mission statements (among other things) all focused on this topic, without a consistent definition of what it actually means. No wonder the most popular Google search on this term was “What is Patient Engagement?”

Here’s what a patient had to say which is indicative of how easy words can get lost in translation, “Last I checked, engagement was a formal agreement to get married. How does that apply to healthcare??”

Another patient explained, “ It’s a paternalistic term. If I don’t want to track my symptoms using your app and don’t want a weekly call, does it make me non-engaged? I don’t always want to be reminded that I am sick but I’m managing my health to the best of my ability, while managing life. Why does it have to be one size fits all?”

Patient Journey
With the prevalence of journey mapping, this term has become widely used in our circles.

As one patient put it, “ A 6 day trip to an exotic place that I’ve happily planned with an origin and destination is a journey. The multiple sclerosis I have or the cancer my husband got a few years ago—that’s not a journey!”

Patient-Centric
Although the Institute of Medicine defines patient-centered care as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions”, many in healthcare have deviated slightly and used this term in different capacities to define strategies now focused on the patient.

“This seems fairly new and I hear it all the time now. What were you focused on before you became patient-centric? It makes me wonder if this is just marketing buzz. Also, if the goal is partnership (and maybe on even terms), shouldn’t I be part of the circle instead of in the middle?”

Co-Create
This term has risen in popularity given the focus on design thinking principles and partnership in healthcare, yet it has left several baffled (and not just patients)!

In a meeting of the minds, a patient advocate said (and I paraphrase here but this led to a roar of laughter and hopefully won’t offend anyone), “We would never use the word co-create with our patients. Let’s co-create! What does that even mean? It almost sounds like procreate.”

Compliance & Adherence
These two words aren’t new to the “no-no” list, yet many of us continue to use them.

One of the most direct responses as to why we should stop, ”Pick up a dictionary or a thesaurus to see how insulting these terms are! These words are synonymous with OBEDIENT, SUBSERVIENT, SUBMISSIVE, and PASSIVE. Non-adherence is equivalent with delinquency? Aren’t we in the 21st century?!”

Survivor
This word isn’t new to controversy either with question on whether it’s cross-culturally acceptable.

“It’s a pessimistic label that forever ties me to a traumatic event in life, “ eloquently explained a patient.

Fight
This has been the subject of research projects with reference of war metaphors connected to a feeling of guilt and/or failure.

“I may come out swinging but if I don’t win the fight , did I not fight hard enough? Am I loser?” asked one patient.

Caregiver
This has different meanings in other countries, such as a nanny or au pair.

As one caregiver articulated, “I don’t see myself as a GIVER of care. I’m a wife that’s confused and just trying figure out how to help my husband manage his mental health and my family cope.”

Shared Decision Making
This is a topic that’s been around for many decades with various models, guidance documents and decision aids introduced over the years. There is still much work required in effective implementation within the average clinical setting (e.g. community practices).

“I understand that patients and families are playing a greater role in their healthcare and ideally there is more exchange and sharing of bi-directional information, but isn’t the final decision made by my wife after we’ve also gotten a second, and maybe even a third opinion, done our research, figured out what insurance is paying, and then figured out what’s best for us right now? It’s ultimately my wife’s decision—not a shared one,” described a caregiver.

Negative
This term has been the source of confusion for quite sometime, yet lives on in healthcare conversations. Healthcare professionals often use this term to describe “normal” but it can lead to a wave of panic until further clarified.

“ When the doctor told me that I had a negative chest x-ray, I was devastated. How would I know that means normal??”

#WordsdoMatter

Please contribute to the Words Do Matter Project and help us shape the overlooked ingredients in healthcare!

What words would you suggest in lieu of these TOP 10? What words would you add to the list?"

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Nurses Must Be Involved in Patient Health Literacy Support

Nurses Must Be Involved in Patient Health Literacy Support | "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

March 22, 2018 - The American Academy of Nursing is calling on nurses to better support patient education and patient health literacy as a part of the organization’s annual policy brief.

“Health literacy is a precursor to health and achievement of a culture of health,” the group wrote in the brief. “Patient empowerment, engagement, activation, and maximized health outcomes will not be achieved unless assurance of health literacy is applied universally for every patient, every time, in every health care encounter, and across all environments of care.”

Patient health literacy is loosely defined as the ability for patients to understand and use health terminology and concepts to become more activated in their own health. Touted as a key social determinant of health, patient health literacy could be the difference between a patient who is able to manage their own chronic illness and one who cannot.

However, according to AAN, pushes for better patient health literacy often fall by the wayside. Only 12 percent of adults have at least proficient health literacy, per HHS statistics. Patients with low health literacy are known to be in poorer health, HHS says. Additionally, patients with low health literacy are less likely to use key patient engagement tools and technologies.

This should not be the case, the group wrote. As such, the push for better patient health literacy will play a key role in the AAN’s most recent policy brief.

“Health literacy is not well understood by clinicians, rarely approached as a health care system issue, and is not universally executed across health care domains,” AAN explained. “Strategies and initiatives must be implemented to prepare nurses and other health care providers to embrace the importance of health literacy and to use available resources to enhance health literacy skills. In health-care systems and community health care settings, leaders must provide resources that enable all health-care providers to minimize the gap between patient skills and abilities and the demands and complexities of health care systems.”

Medical professionals, including and especially nurses, must uncover how to effectively improve health literacy among patients. This includes efforts to emphasize health literacy with every patient during very healthcare encounter, the group wrote. Nurses have an important part to play in supporting better patient health literacy, which is why AAN has integrated it as a part of its strategic goals.

“The timing is right for a call to action to increase nurses' knowledge, attitudes, behaviors, practice resources, and system capabilities to lessen the health literacy-related burden on patients and costs for health care,” AAN wrote. “Implementation of a nursing-specific health literacy policy will result in patient empowerment, engagement, and activation; increased health care equity; and improved patient, population, organization, and system outcomes.”

AAN has split its efforts into three key domains: practice, systems of care, and partnerships.

“A nursing focus on health literacy as an essential component of all patient care will enhance the provision of person-centered care, patient safety, and patient, population, and system outcomes,” the organization wrote.

Nurses and their care partners must use a universal standard for assessing patient health literacy, and initially work under the assumption that all patients are at risk for not understanding health information or terminology, the policy brief states. Nurses must address patient health literacy at each stage of the care encounter, including diagnoses, treatment, and discharge.

Nurses must also integrate patient health literacy efforts seamlessly into patient-provider interactions, create a judgement-free environment for reviewing medication terminology, and use non-clinical terms and patient teach-back to reinforce literacy reviews.

Organizations may consider consulting patient health literacy checks across the entire health system, as well. Industry-leading tools such as Health Literacy Universal Precautions Toolkit, Building Health Literate Organizations: A Guidebook to Achieving Organizational Change, Ten Attributes of Health Literate Health Care Organizations, and The Health Literacy Environment of Hospitals and Health Centers may be of assistance.

Health systems can reinforce efforts through financial incentives and universal success measures, as well. Additionally, hospitals and health systems that illustrate a business case for supporting better patient health literacy may be more successful, the report authors explained.

Finally, efforts to support partnership across different healthcare entities and specialties will better reinforce the need for increased patient health literacy. Health system nurses must partner with counterparts in other areas of the hospital and the health industry writ large to instate health literacy goals and measures.

Joining groups such as the Joint Commission can help establish best practices within an individual organization, the brief authors wrote. Nurses can also influence organizations to integrate efforts for patient health literacy in their quality measures, the authors noted.

Ultimately, this policy brief tapped into nurses’ unique positions to drive better health literacy in their patients, according to Lori A. Loan, PhD, RN, FAAN.

“Research into consequences of, and solutions to mitigate, low health literacy are widely available, but seriously underutilized,” Loan, who is also a member of the Academy’s Expert Panel on Quality Health Care, said in a statement. “Nurses as leaders are uniquely positioned to minimize the gap that often exists between patient skills and abilities and the increasingly complex demands of health care systems by implementing a health literacy universal precautions approach with every patient, every time and in every health care encounter.”

AAN President Karen Cox, PhD, RN, FAAN, echoed those sentiments, saying that nursing policy on patient health literacy is timely and appropriate for the organization’s industry goals.

“The Academy publishes this timely policy brief to call on nurses to engage in health literacy activities for patient empowerment,” Cox pointed out. “Health literacy activities are well-aligned with the Academy’s mission and strategic plan, and aids in our work with the Robert Wood Johnson Foundation and others on creating a Culture of Health”.

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Medical Terms in Patient Education: Using the Confusing to Explain the Complicated

Medical Terms in Patient Education: Using the Confusing to Explain the Complicated | "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
In an effort to ensure good patient education, nurses are taught the teach-back method. After we provide education, we ask patients to say back to us what they understood, and then we clarify any errors. But straight out asking someone to repeat back what we just said puts them on the spot. It feels like a test of them, rather than a test of our teaching, which is awkward at a time when patients and their families are already uncomfortable. I like to add a kind of disclaimer that puts the burden back on me: "Let me check how well I explained things. Can you tell me what I said/go over with me what I said? That way if I didn't do a good job, I can fix it." It seems like a small distinction, but it puts any mistake back on me. If they get the information wrong, instead of it being their fault, it is mine. Taking the pressure away makes it easier for them to explain back and for me to clarify any errors in understanding.
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Graphic Medicine at the National Library of Medicine

Graphic Medicine at the National Library of Medicine | "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
In an interview for the Graphic Medicine Podcast, director Brennan stresses the important role graphic medicine can play in training clinicians, as research substrate, in communication with clinicians, and as self expression of personal experience with health care. You can listen to that full interview here.
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62.8% of Americans Have no Idea Where their Medical Data is Stored

62.8% of Americans Have no Idea Where their Medical Data is Stored | "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

SYDNEY, March 12, 2018 /PRNewswire/ 

 

- A recent research campaign carried out by start-up ScalaMed, a mobile prescription system, has shone a spotlight on America's need for a patient-centred approach to medication management, and an urgent need to resolve issues currently faced by the country's healthcare system.

The study, which included 800 patients, uncovered a number of key issues Americans face when it comes to managing their prescribed medication, while also highlighting how little they know about where their medical records are stored and who has access to their data.

Key findings of the survey:

- The majority of respondents have no knowledge as to where their medical data is stored and who has access to it.


- They take prescribed medications regularly, but have at times been confused about which medicine to take and how much. A small percentage of respondents even required hospital care as a result of a dosage error.


- They often have more than one doctor in their life prescribing medicines, a small percentage have more than three.


- Respondents overwhelmingly agreed they should own their health data and believe one of the USA health system's key issues is that it doesn't focus enough on the patient.


- Waiting periods and access to relevant services and care was also noted as a key issue.


- Poignantly, the majority of respondents agreed that the American Government shows no sign of having any plans in place to help manage or resolve these issues.

In numbers:

- More than a third of respondents often can't remember the names and dosages of their medicines, while almost half have at times forgotten the names of their medicines all together. Waiting periods, access to appropriate healthcare, access to their pharmacy and forgetting to renew prescriptions were also noted as issues when it comes to sticking to their medication plan.


- 43 per cent of respondents said they'd be interested in an app to help manage their prescriptions on their phone, adding that a digital reminder would be most useful.


- That said, more than half of respondents shared concerns around data security and hacking issues should their prescription records be stored in one central location (supporting a blockchain approach, which decentralizes these records)


- Most alarming was the fact that 62.8 per cent of respondents said they didn't know where all their medical data/information is stored, while more than 90 per cent said they didn't know if the software their doctor uses to record their medical

information sells their data on for a profit.


- Almost half of respondents called for a more patient-centric approach to healthcare, adding that they often feel sidelined in the management of their medical records, and almost 80 per cent said they should own their own health data.


- Of the issues highlighted, 680 respondents said they don't believe the government has a plan to resolve or manage it.

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Getting Your Patients' Buy-in on Medication Adherence | NIDDK

Getting Your Patients' Buy-in on Medication Adherence | NIDDK | "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
Q: What are some issues that can contribute to medication nonadherence?

A: With a chronic illness, patients might get discouraged because they don't see any immediate improvement, and sometimes they even see negative side effects from taking the medicine. Sometimes patients do not believe the medicine will be beneficial because they do not understand how long they have to take it to see improvement. Patients may also have a history of mistrust. They may come with preconceived concerns that they do not share with you.
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Mary Grace Flaherty on promoting health at the library | ALA Editions

Mary Grace Flaherty on promoting health at the library | ALA Editions | "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 trusted guardians of facts and knowledge, libraries play an important role in providing their communities with accurate health information. Furthermore, as Mary Grace Flaherty writes in her new book, taking the initiative to offer health promotion programming is a valuable form of community outreach, serving community needs while increasing visibility. In this interview we discuss the consumer health movement and how it intersects with public libraries. 
(...)
As information providers and community resources, libraries are uniquely situated to assist patrons with acquiring and evaluating health information resources, and get many opportunities per year to do so. If we consider libraries as organizations that assist with all types of literacy training, the consequences are two-fold. First, libraries can assist through materials provision, by acquiring current materials and assuring resources are kept up-to-date and available in plain language and at reading levels patrons can understand. They can also guide patrons to credible online resources like MedlinePlus. In addition, they can initiate programs to address specific patron health needs, such as signing up for health care."

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What Happens When the Patient Becomes the Boss?

What Happens When the Patient Becomes the Boss? | "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
Patients today have access to tools that allow them to know much more about their personal health than ever before—for better or for worse. Whether it’s the ability to look up clinical trials and new research or use wearable devices that track everything from steps to sleep quality, men and women can gather more information and bring more informed questions to their doctor. But is the medical community ready for it?

At Fortune magazine’s Brainstorm Health conference, medical leaders talked about how patients can become more empowered, and the obstacles they still face. “I would say the patient is not yet in the driver’s seat, but should be in the driver’s seat,” says Dr. Valerie Montgomery Rice, the president and dean, of Morehouse School of Medicine. “Right now the disease is in the driver’s seat.”

Part of the reason for this, Rice says, is that doctors are not necessarily as well educated in the technology aspects of their job, and the ability to use multiple data sources to make decisions—even if patients are ready for that kind of care. To improve the modern doctor-patient relationship, more may need to be done to educate physicians. Rice says Morehouse is working to make sure physicians are exposed to technology much earlier, starting in medical school. Students right way learn how to use electronic medical records (which Rice says are in desperate need of an update) as well as how to embrace technology in their jobs—from basic electronics like laptops to social media. “We need them to be comfortable using technology,” she says.

Even medical professionals have learned about the need to take medical care into their own hands as patients. Dr. Eric Topol, the founder and director of Scripps Translational Science Institute, told the audience about the “nightmare-ish course” that happened to him in the following his knee surgery when his physician couldn’t figure out what was wrong (his wife ultimately diagnosed him after spending some time combing the Internet for answers).

But there’s also the benefit of having more control. Christi Shaw, the president of Lilly Bio-Medicines, talked about becoming the caregiver for her sister with multiple myeloma, a cancer that forms in plasma cells. Though doctors told Shaw they were out of treatment options for her sister, Shaw contacted other medical experts and learned about a study of an un-approved drug in that could work. Her sister’s doctor was open to trying it, and it ultimately reduced her sister’s cancer significantly within one month, according to Shaw. Without her own research and persistence, her sister’s medical team wouldn’t have known about the drug in the first place.

“The science is exploding and it’s coming so fast at us, and we need to figure out how to harness it,” Shaw said.

Not all physicians may be ready for patients to take more ownership of their health and treatment plans, but the panelists agreed that medicine is moving in the direction of more educated and empowered patients. One way patients can improve their own treatment experiences, Shaw suggests, is by studying up before their doctors appointments and bringing their physicians specific questions to discuss during short appointments. One day, they may even be able to present doctors with data from wearable devices like fitness trackers and smartwatches, too.

“We need to embrace and cultivate that [people] are taking more charge of their care,” said Topol.
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The Gap Between Real World Healthcare & Social Media

The Gap Between Real World Healthcare & 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

Part of what I like to think makes my blog unique is that I’ve been a cancer patient as well as a clinician treating cancer patients. So, I have one foot in each camp, as it were.

This blog, and my introduction to social media, germinated almost ten years ago after I had been diagnosed with breast cancer in July of 2008. Desperate for help and information, I found my way, as many have and many will, to BreastCancer.org and it’s online, peer support community. Dozens, possibly hundreds, of the people I connected with in that community are still my friends online all these years later on other social media. Then and now, these friends help validate my experience and often provide helpful information about breast cancer and treatment and side effects and middle-of-the-night freaking out. Back then, communicating with them spurred me to start reading research studies again, which I hadn’t done much of since physical therapy graduate school. Because of that, I began to connect with clinical and medical and science websites, and with researchers who’d published interesting studies or were seeking study participants. One of the most helpful experiences I had early on was finding an online listing for two doctors within driving distance who were conducting a clinical trial on treating cancer related fatigue. Thus, I am one of the first people to extol the virtues of social media and of those of us who employ it to advocate for better healthcare.

But…

And it’s an important ‘but.’ I may write about healthcare here in cyberspace, but in my daily, real-world job, I work in the concrete world. I do connect with a secure server to upload my patient notes and download my schedule each day on my work laptop. And I email my colleagues and share a few pdf’s.

But my real work has little to do with zeroes and ones. I see patients of all ages, with all kinds of healthcare problems, in their homes, and try to teach them to walk better or not fall or to get out of bed without pain. And I have to tell you that, for most of them, social media has little to no impact on their experience of their own health and healthcare. A few of them might have a Fitbit. A few might have a patient portal account that they use to email their doctors’ offices or confirm upcoming appointments. And that’s about it.

The last thing that most, perhaps nearly all, of my patients would consider doing when they have a health crisis is to get online. You’d be forgiven for thinking this is an age thing, that it’s because most of my patients are elderly. And you’d be wrong. Sometimes, it does occur to a few of them, or to one of their family members or caregivers, to buy things like tub seats and walkers online. Most of the time, however, I have to tell them they can buy that stuff online. I have to tell the folks who have uncommon chronic diseases, or even common ones, that there are online communities that can help them feel less isolated. I have to tell them that there are websites for our state’s department of health, the department of elderly affairs, the local hospital or orthopedic practice, for Cancer.org, for the American Diabetes Association, etcetera, ad infinitum.

Pay No Attention to That Charlatan Behind the Curtain

Why don’t people get online for help with their health issues? Because they have health issues. Which means that they feel like shit, they’re exhausted, confused, overwhelmed, in pain, and generally gobsmacked. And the last thing they feel like doing is anything that does not immediately and concretely help them to feel better. And you know what? Mostly, I’m glad they don’t get online. I want them to listen to me and their doctors and nurses, and to follow our advice, not to read most of the execrable bullshit that passes on the web for healthcare information. I do not want them getting their health advice from the likes of Gwyneth Paltrow or Dr. Google. It’s bad enough that they watch TV. I wish I had a dollar for every time I’ve had to refute some nonsense a patient heard via Doctor Oz.

It’s hard enough for me to sort through the dross on the web to find the genuine nuggets. And I have an advanced degree in science. And I still get hoodwinked sometimes. But I also have online friends who are scientists, doctors, and intelligent healthcare journalists, and we help each other wade through the swamp.

That is not, however, true for most people. I have some very admirable friends online who have devoted themselves to improving health literacy, who work hard to improve their own, so that they can provide the patient’s perspective to researchers who design studies. But the odds that most of the thousands of people I have ever treated in the past twenty-five years could or would find their way to these web advocates or others like them is a snowball’s chance in hell. For real.

A Breed Apart

The thing to keep in mind is that those of us who are members of the healthcare social media community are not most people. Yet we may think we’re more important than we really are to most people. If there’s one thing that social media is good at, it’s declaring how important and influential social media is. And that’s true, up to a point. But we need a little humility, a little perspective about our role. When you have crushing, unrelenting chest pain, the sensible response is not to Tweet about it. You call a freaking ambulance.

I remember the first time I took a survey — one of several over the years — about how useful social media had been to me as a cancer patient. It was put together by a grad student who was working on her Ph.D. and whose mom had had breast cancer. It was pretty good. But when I got to the questions about who did the most to help me outlast cancer, or who I could most count on in a crisis, none of the answers included social media. The answers included the doctors and other clinicians who treated me, and the friends who drove me to see them. And yet, to hear some tell it, social media is going to save us all and reinvent the healthcare system. Really? Tell that to all my patients and work colleagues. Social media has facilitated awareness, research, and patient support. And it will continue to spur new and worthwhile ideas and projects. But the rest of the fix is not that simple.

In the Trenches

If you want to hear a passionate discussion about how to fix the healthcare system, talk to another clinician. And I don’t mean online. I mean in person, in a clinical setting or at a seminar. Or at the local pub over a beer or three. You’ve never heard intelligent snark like you’ll hear from us. A few of the doctors I’ve known over the years, who have also treated me as a patient, are especially enlightening. When I see them for a checkup, we often spend the first few minutes having a nice, soul-cleansing rant about it all. Do they check out social media for ways to further the cause? Hell, no. They have neither the time nor the energy. Frequently, neither do I. We’re all too busy trying to help our patients get better, or returning their phone calls, or typing notes about them on a computer, or wrangling with insurance companies and their criteria for reimbursement, or going to meetings and continuing ed seminars so we can remain competent enough to keep our licenses. On a daily, practical basis, has social media or digital documentation made our work easier or better? Not really.

I don’t have any immediate answers to this conundrum. And the ideas I have would require another blog post. But I can tell you one thing. When my patients improve, it has everything to do with how much access they feel they have to a real-world clinician who knows them, and how empowered they feel to take responsibility for their health. And then to do what they truly need to do in order to get better. And that’s where fostering the nexus between social media and the real world may be genuinely useful. Any and all ideas welcome. In the meantime, onward, friends.


Via Plus91, Denis Granger
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How the Internet Changed the Way New Patients Find a Physician

How the Internet Changed the Way New Patients Find a Physician | "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

The Internet has changed the way nearly everyone in the developed world experiences healthcare. With volumes of medical information–and misinformation—available online, the digital age has empowered patients to self-diagnose conditions, research treatments, and shop around for healthcare practitioners of all kinds.

For healthcare providers who want to reach new patients, there’s more opportunity now to grow their practices—if they know how people are looking for them online.

Selecting a Healthcare Provider Before the Internet

Not that long ago, patients looking for a new physician often relied on word-of-mouth referrals from family and friends. Or they might have chosen a healthcare provider affiliated with their healthcare plan and hoped for the best. They also had the option to let their fingers “do the walking” through the Yellow Pages to find a provider close to home.

If a patient needed to see a specialist, they would ask their primary physician for a recommendation or referral. Although they hoped they’d wind up with a qualified, caring physician, they often did not look at provider’s credentials or patient satisfaction ratings.

If patients conducted any online research, their findings were mostly limited to a provider’s name, address and phone number—obviously not enough to paint a full picture of what they could expect.

Read: Is Word-of-Mouth the Best Marketing Resource for Healthcare Practices?

How New Patients Choose a Healthcare Provider Today

Today, patients have countless online avenues to research potential healthcare providers. The most widely used options are listed below.

Search Engines

New patients often start their search for a healthcare provider on Google or other search engine. This makes having a fresh, optimized online presence critical for providers who want to attract new patients.

A growing number of patients are using smartphones as their primary means of online access. According to Hitwise, 68% of consumers start their mobile health research with a search engine. This is one more data point to keep in mind when marketing doctors online–to ensure practice websites are optimized for mobile search results.

Online Patient Reviews

Patients put a lot of trust in unbiased reviews and opinions from other patients when choosing doctors. Research shows that 77% of consumers use online reviews as the first step in finding a new physician–whether on public sites like Google My Business and Healthgrades, websites managed by provider practices, or sites facilitated by health plans for their members.

  • Patients rate and comment on everything nowadays, including:
  • The ease of making appointments
  • How helpful and courteous office staff are
  • Provider communication
  • Wait times
  • Overall condition and cleanliness of the office
  • Patient follow-up

Since patient reviews carry so much weight, it’s important for providers to monitor and respond to any negative reviews immediately. A recent Bright Local survey showed that a single negative review can cost a business an average of 30 customers.

Social Media

Although word-of-mouth still ranks high as a means for finding a provider, today’s patients – particularly Millennial patients – are apt to solicit input through social media. Sites like Facebook and Twitter provide forums for friends and neighbors to share their experiences and recommend doctors.

Location-Based Services

Nine out of 10 respondents in a Pew Research Center survey said they use their phone to get directions, recommendations, or other information related to their location. That includes finding healthcare providers close to home.

Look: What Makes a Website Useful for Local Search?

Healthcare and Business Directory Listings

Listings on healthcare and local business directories are essentially free advertising for healthcare providers. Providers should claim and optimize listings, since they can drive people to their websites and help with search engine rankings.

Top Doctor Roundups

Special “best doctor” features in regional magazines have become a popular resource for patients who put stock in nominations from a provider’s peers. Since these listings don’t offer much context for how a provider landed on the list, many patients use this kind of information as a jumping off point to do more research.


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Patient Engagement, Health Literacy Amid Top Patient Safety Issues

Patient Engagement, Health Literacy Amid Top Patient Safety Issues | "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
March 15, 2018 - Patient engagement and patient health literacy have ranked among the top patient safety issues on ECRI Institute’s 2018 Top 10 Patient Safety Concerns for Healthcare Organizations.

Patient engagement and patient safety ranked nine out of the 10 items. Topping the list were diagnostic errors, opioid misuse and safety, and care coordination within a healthcare setting.

Patient engagement and patient health literacy can have a considerable influence on organization-wide patient safety initiatives. An engaged and well-educated patient can serve as a protective barrier to patient safety incidents and can support providers who are trying to prevent medical errors.
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How Does Social Media Impact Perceived Provider Professionalism?

How Does Social Media Impact Perceived Provider Professionalism? | "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
Patients perceive provider social media accounts with purely patient education material with more provider professionalism than profiles with personal content.
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Med Students Who Make Time for Art Have More Empathy

Med Students Who Make Time for Art Have More Empathy | "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
A new study published today, conducted across five universities in the United States, has confirmed that medical students with greater exposure to the arts and humanities tend to have significantly better empathy, emotional intelligence, and wisdom—and they are less likely to develop symptoms of burnout. The findings could affect not only medical school curricula, but also admissions and recruitment, and professional development among practicing doctors.
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4 reasons why patients don't take their medications

4 reasons why patients don't take their medications | "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 often see patients for follow-up and learn they are not taking the medications either I or another health care provider prescribed. Sometimes the reason is obvious, and other times the patient is reluctant to give up the information. Patients have the right to take or not take medication that was prescribed. But, sometimes by not doing so, they are putting their health at risk.

As a doctor, I want my patients to take the medications I prescribed otherwise I would not have done so. In exploring reasons patients often don’t take their medications, many of these are due to misconceptions, lack of clarity or other factors that may be easily corrected. And most often it is not the patients’ fault.
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Natural Language Processing Could Translate EHR Jargon for Patients

Natural Language Processing Could Translate EHR Jargon for Patients | "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
November 09, 2017 - Using natural language processing (NLP) to translate confusing and complex medical jargon into everyday speech may help patients feel more in control of the information presented to them. 

More than a third of American adults have limited health literacy, according to the 2006 National Assessment of Adult Literacy, which puts them at risk of failing to understand provider instructions about medications, post-discharge care, or recommended preventive services.

While access to patient health records through online portals attempts to solve this problem by giving patients the opportunity to review their personal information outside of the clinic setting or after a hospitalization, the data presented is often taken directly from sources intended primarily for physician use with little consumer-friendly interpretation.

Physicians have repeatedly expressed concern over patient misinterpretation of electronic health record (EHR) data when presented with initiatives such as the Open Notes project, which aims to give consumers complete access to their information.

Wary of having to spend extra time defining terms for patients or soothing the fears of individuals who misread a diagnosis, many providers have approached the patient data transparency question with caution.
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Transparent Prognosis Talks Improve Patient-Provider Relationship

Transparent Prognosis Talks Improve Patient-Provider Relationship | "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
November 29, 2017 - Healthcare experts may have disproven a common patient-provider relationship myth stating that conversations about poor patient prognosis can harm patient satisfaction. This in fact may not be the case, with patients reporting better relationships with providers when prognosis talks are transparent, according to recent research.
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Comics and Medicine:The Ways We Work – The Center for Cartoon Studies

Comics and Medicine:The Ways We Work – The Center for Cartoon Studies | "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

AUGUST 16-19, 2018
AT THE CENTER FOR CARTOON STUDIES

KEYNOTE SPEAKER: DAVID MACAULAY
Macaulay is perhaps best known for the award-winning international bestseller The Way Things Work. This brilliant and highly accessible guide to the workings of machines was dubbed “a superb achievement” by the New York Times and became a New York Times bestseller. Using a humorous woolly mammoth to illustrate principles, Macaulay offers even the least technically minded reader a window of understanding into the complexities of today’s technology. He uses this same humorous approach and uncanny ability to explain complicated systems in The Way We Work, which tackles the most intricate machine of all: the human body.

David Macaulay’s detailed illustrations and sly humor have earned him fans of all ages. His books have sold more than three million copies in the United States alone, and his work has been translated into a dozen languages. His many awards include the Caldecott Medal and Honor Awards, the Boston Globe Horn Book Award, the Christopher Award, and the Washington Post Children’s Book Guild Nonfiction Award. He was a two-time nominee for the Hans Christian Andersen Award and received the Bradford Washburn Award, presented by the Museum of Science in Boston to an outstanding contributor to science.

In 2006 he was awarded a prestigious MacArthur Fellowship, given “to encourage people of outstanding talent to pursue their own creative, intellectual, and professional inclinations.” As “an individual of distinction in the field of children’s literature,” Macaulay delivered the esteemed 2008 May Hill Arbuthnot Honor Lecture, an honor bestowed on him by the American Library Association.

KEYNOTE SPEAKER: SUSAN MERRILL SQUIER
Susan Merrill Squier is Brill Professor Emerita of Women’s, Gender, and Sexuality Studies and English at Pennsylvania State University and Einstein Visiting Fellow, Freie Universität, Berlin, where she is part of the PathoGraphics Project examining the relationship between illness narratives and works of graphic medicine. Squier’s many books include Epigenetic Landscapes: Drawing as Metaphor (Duke, 2017), Graphic Medicine Manifesto (2015), Liminal Lives: Imagining the Human at the Frontiers of Biomedicine (2004), Babies in Bottles: Twentieth-Century Visions of Reproductive Technology, and Poultry Science, Chicken Culture: A Partial Alphabet. She has been scholar in residence at the Max Planck Institute for the History of Science, Berlin; the Zentrum für Literatur-und Kulturforschung, Berlin; The Bellagio Study and Conference Center, Italy; Visiting Distinguished Fellow, LaTrobe University, Melbourne, Australia; and Fulbright Senior Research Scholar, Melbourne, Australia. She is a section editor of Reproductive BioMedicine and Society and a member of the editorial boards of Configurations, Literature and Medicine, and Journal of the Medical Humanities.  Her co-edited special issue of Configurations: A Journal of Literature, Science and Technology on “Graphic Medicine” was published by Johns Hopkins University Press in 2014, and with Dr. Ian Williams she co-edits the book series Graphic Medicine at Penn State University Press.

CALL FOR PAPERS
We invite the submission of a wide variety of abstracts focusing on health, medicine, and comics in any form (e.g. graphic novels and memoir, comic strips, manga, mini comics, web comics) that examine or showcase topics including, but not limited to:

  • the use of comics and cartooning for clinical interventions and teaching
  • navigating institutional headwinds
  • addressing time constraints to creative work
  • professional development and engagement with graphic medicine
  • access to funding sources
  • establishing productive collaborative relationships
  • planning and completing graphic medicine projects
  • engaging communities of care
  • work in the context of disability justice and advocacy
  • representing the ‘work’ of bodies with relation to diagnosis and treatment
  • unseen labor in treatment and care
  • spaces of creative production
  • creative labor and the tools of graphic medicine
  • outcome and efficacy research

For details on CFP, click here.

PROGRAM FORMAT

  • Panels and presentations by scholars and creators
  • Browsing The Schulz Library collection graphic novel collection
  • Informal “round table” small-group discussions
  • Hands on workshops with The Center for Cartoon Studies faculty
  • Presentation Basics workshop focused on pictorial storytelling
  • Exhibits

 

ABOUT GRAPHIC MEDICINE
For more information about Graphic Medicine, to see recent conference programming, visit: graphicmedicine.org

Last year’s Seattle-based conference focused on “accessibility” as an aspect linking comics and health; two areas where improvements in reaching diverse audiences and creating platforms for marginalized voices are continuous and important topics of discussion.


LOCATION
The Center for Cartoon Studies is located in the village of White River Junction, Vermont, in the region of the Upper Valley (NH/VT) including the Dartmouth College community.

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How to write easy-to-read patient support materials #esante #hcsmeufr #digitalhealth

How to write easy-to-read patient support materials #esante #hcsmeufr #digitalhealth | "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

Low health literacy is a massive problem in the UK, Europe and United States. The medical community in general has an ongoing problem with low patient adherence to treatments, and this is one problem that could be effectively tackled with better patient support materials. ‘Better’ in this case means support materials that patients with lower health literacy can understand more readily.

Creating support materials that give plenty of information as well as comprehensive instructions or advice on living with a condition can be a difficult undertaking. Medical writers’ natural language will include terms outside general education levels, and a fine line exists between simplification and dumbing down. 

 


Via Giuseppe Fattori, Giovanna Marsico, Lionel Reichardt / le Pharmageek
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Health Literacy and Health Information Technology Adoption: The Potential for a New Digital Divide

Health Literacy and Health Information Technology Adoption: The Potential for a New Digital Divide | "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

Abstract

Approximately one-half of American adults exhibit low health literacy and thus struggle to find and use health information. Low health literacy is associated with negative outcomes including overall poorer health. Health information technology (HIT) makes health information available directly to patients through electronic tools including patient portals, wearable technology, and mobile apps. The direct availability of this information to patients, however, may be complicated by misunderstanding of HIT privacy and information sharing.

Objective

The purpose of this study was to determine whether health literacy is associated with patients’ use of four types of HIT tools: fitness and nutrition apps, activity trackers, and patient portals. Additionally, we sought to explore whether health literacy is associated with patients’ perceived ease of use and usefulness of these HIT tools, as well as patients’ perceptions of privacy offered by HIT tools and trust in government, media, technology companies, and health care. This study is the first wide-scale investigation of these interrelated concepts.

Methods

Participants were 4974 American adults (n=2102, 42.26% male, n=3146, 63.25% white, average age 43.5, SD 16.7 years). Participants completed the Newest Vital Sign measure of health literacy and indicated their actual use of HIT tools, as well as the perceived ease of use and usefulness of these applications. Participants also answered questions regarding information privacy and institutional trust, as well as demographic items.

Results

Cross-tabulation analysis indicated that adequate versus less than adequate health literacy was significantly associated with use of fitness apps (P=.02), nutrition apps (P<.001), activity trackers (P<.001), and patient portals (P<.001). Additionally, greater health literacy was significantly associated with greater perceived ease of use and perceived usefulness across all HIT tools after controlling for demographics. Regarding privacy perceptions of HIT and institutional trust, patients with greater health literacy often demonstrated decreased privacy perceptions for HIT tools including fitness apps (P<.001) and nutrition apps (P<.001). Health literacy was negatively associated with trust in government (P<.001), media (P<.001), and technology companies (P<.001). Interestingly, health literacy score was positively associated with trust in health care (P=.03).

Conclusions

Patients with low health literacy were less likely to use HIT tools or perceive them as easy or useful, but they perceived information on HIT as private. Given the fast-paced evolution of technology, there is a pressing need to further the understanding of how health literacy is related to HIT app adoption and usage. This will ensure that all users receive the full health benefits from these technological advances, in a manner that protects health information privacy, and that users engage with organizations and providers they trust.

 


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How to Integrate the Patient Voice into Healthcare Decision-Making

How to Integrate the Patient Voice into Healthcare Decision-Making | "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
November 08, 2017 - Adding the patient voice into healthcare decision-making is a critical aspect of practice improvement. With the healthcare industry becoming increasingly more patient-centric, more organizations are focusing on improving the patient experience. Considering patient viewpoints is an essential strategy for patient centricity.
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Consumers Say Patient-Provider Relationship Key to Quality Care

Consumers Say Patient-Provider Relationship Key to Quality 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
November 15, 2017 - Patients and providers are on the same page about what constitutes a quality healthcare experience, both stating that a strong patient-provider relationship is key, according to findings from the latest Council of Accountable Physician Practices (CAPP) consumer healthcare report.
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Care Coordination Across Provider Networks Creates Patient Trust

Care Coordination Across Provider Networks Creates Patient Trust | "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
November 20, 2017 - Supporting strong care coordination and teamwork amongst providers is a core aspect of improving the patient experience. Patients want their providers to be on the same page during a hospital stay because it makes patients feel safer and more cared for.

It’s hard to feel safe or have a positive experience when different members of the care team – from the residing physician to nurses and other hospital staff – have not all agreed upon how to treat a patient. As more clinical stakeholders become involved with patient care, it is important for team members to communicate and work collaboratively.
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The Appointment Ends. Now the Patient Is Listening.

The Appointment Ends. Now the Patient Is Listening. | "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
The next time you see your cardiologist or internist, what would happen if you took out your smartphone or a digital recorder and said you’d like to record your appointment?

The doctor might be startled, might bridle, might have visions of a supposedly confidential discussion showing up on YouTube — or in a malpractice lawyer’s files.

Or the doctor might think more like Dr. James Ryan, a family practitioner in Ludington, Mich.

With his patients’ approval, Dr. Ryan routinely records appointments, then uploads the audio to a secure web platform so that patients can listen whenever they need to recall what they discussed with him. They can give family members access to the recordings as well.
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Doctors Tell All—and It’s Bad

Doctors Tell All—and It’s Bad | "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

"But this essay isn’t about how I was right and my doctors were wrong. It’s about why it has become so difficult for so many doctors and patients to communicate with each other. Ours is a technologically proficient but emotionally deficient and inconsistent medical system that is best at treating acute, not chronic, problems: for every instance of expert treatment, skilled surgery, or innovative problem-solving, there are countless cases of substandard care, overlooked diagnoses, bureaucratic bungling, and even outright antagonism between doctor and patient. For a system that invokes “patient-centered care” as a mantra, modern medicine is startlingly inattentive—at times actively indifferent—to patients’ needs."

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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