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"Patient Engagement" in Health Care: Literature Review | Journal of Participatory Medicine

"Patient Engagement" in Health Care: Literature Review | Journal of Participatory Medicine | Patient Self Management | Scoop.it
The term "patient engagement" is at risk of becoming a vague buzzterm, as it lacks a shared definition. This paper aims to pinpoint the key conceptualizations of "patient engagement" from recent academic literature, in order to deepen understanding of the term.
rob halkes's insight:

Read it - and think about what you  "mean" when you talk about "patient angagement" - Informative!

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Josefin Y-Dahlqvist's curator insight, September 2, 2014 4:08 PM

The Challenges of Conceptualizing Patient Engagement in Health Care

Patient Self Management
patient self management, compliance, adherence, patient coach, patient monitoring, patient empowerment, shared decision making, patient education, patient counseling, participatory care
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What’s up on WhatsApp: How native messaging apps can make the difference - FACE

What’s up on WhatsApp: How native messaging apps can make the difference - FACE | Patient Self Management | Scoop.it

In our fast-moving world, how can market research agencies keep up with the way consumers express themselves? Tereza Lachmanova, who heads up FACE’s online research communities and helps researchers manage and draw insights from community data, discusses how using publicly available digital tools can benefit self-ethnographic research in this new white paper. Tereza says:

“With technology rapidly changing, market researchers have been faced both with great opportunities and challenges when it comes to working with online communities. We are constantly evaluating how to get our communities most engaged with our research, and this paper discusses our findings on testing the use of existing mobile messaging apps rather than using research-specific ones.”

“Having worked on a wide variety of self-ethnography projects, Tereza tested numerous approaches to ensure community members would feed back ‘in-the-moment’ content, meaning they communicate experiences, preferences and emotions as they happen, rather than communicating them as a prompted task at a fixed time of day.”

To read the full white paper, you can download it for free on the FACE website here.

rob halkes's insight:

Great insights into how we might learn from patients' experiences through self-ethnography via "whatsapp"

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One thing every doctor should say to every patient

What if every physician, in every communication with a patient included a "What you can do for yourself is....." statement? This 6 minute exploration of patient engagement and self-management describes one patient's experience with her physician's suggestion that she experiment with integrative health practices.

rob halkes's insight:

Great story about a well meant advice to each patient from each physician...

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5 myths physicians believe about patient experience

5 myths physicians believe about patient experience | Patient Self Management | Scoop.it
See why clinician-patient communication, leadership of the care team, and support and empathy for the patient across the unit are the most important factors for success—and how physicians can embrace the role of
rob halkes's insight:

Good to se these in a row: Let these myths about patient experience  help you evaluate your own beliefs and attitudes ;-)

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Big BMJ supplement on Patient Centred Care – with many SPM and MedX voices | e-Patients.net

Big BMJ supplement on Patient Centred Care – with many SPM and MedX voices | e-Patients.net | Patient Self Management | Scoop.it

By ePatient Dave:
This is a great week for Society of Participatory Management (SPM), for our colleagues at the Stanford Medicine X conference, and for everyone else who's been working for years to shift medicine's
I’m thrilled to say that the BMJ, formerly the British Medical Journal, has just released a new article I wrote about the “social movement” aspect of our work, including the rationale for listening to the patient perspective.

Intended for medical audiences around the world, it’s part of a big, 21-article multimedia “Spotlight” supplement that will be in Thursday’s print edition; it was all released online yesterday. Over on the e-patient blog I posted the full list of articles, including the names of other members of our Society for Participatory Medicine who are in this issue. Big participation, big visibility!

This supplement, appearing in one of the world’s top medical journals, may well be the biggest moment yet in the history of our movement. It’s got hours of reading and listening, with contributions from eight countries, if I counted correctly.

Those of you in my generation – the era of many social movements – will relate to the parallels with what’s happening today: a whole class of people whose voice has been considered “not worthy” is speaking up, demonstrating capability, and pushing back when we’re told to “stay in our place.” :-)

rob halkes's insight:

The new era of health care is to be build around these principles:

- Multidisciplinary connected,
- Integrated,

- participatory care, and,

- eHealth

Participatory care is about patient empowerment, not only by principle but also by effectiveness. And, beyond that, it is also from a finance argument that active, guided, but self-managing patients will lead to better health outcomes and less costs.

Lots of health care systems, governments and payors must reflect to find approaches of development that are constructively aiming at building the new structures of health care with parallel reasonable and attainable efforts in lowering budgets, instead of enforcing costs cuts that initiate panic and non desirable effects.

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Medical errors: We can't trust doctors to get it right

Medical errors: We can't trust doctors to get it right | Patient Self Management | Scoop.it

We have lost track of what should be the most important dictum in medicine, his "First, do no harm."


“If doctors do no other good, they at least prepare their patients early for death, undermining little by little and cutting off their enjoyment of life.”

These words from Montaigne are 350 years old, but, sadly, too often they describe the results of modern medicine, particularly when it is mindlessly applied in a needlessly heroic way to the end of life.


I spend a lot of time going around to different places warning professionals and the public that overdiagnosis, overtesting, and overtreatment are bad for our health.

Recently I have been witnessing these dangers firsthand. I have a friend who has lung cancer — the “good,” slow-growing kind. His doctors have been less kind than the cancer. They keep screwing up in ways that seem likely to kill my friend before his cancer does.

The basic problem is that modern medicine consistently violates the ancient advice of Hippocrates: “It is better to know the patient who has the disease than the disease the patient has.”


My friend has a small army of very highly specialized doctors all treating lab results in one tiny medical domain while ignoring all the aggressive stuff the other specialists are doing. None of the doctors has a global picture of my friend’s treatment and the specific risks and benefits that apply to each new test or treatment.

The result is dangerous medical chaos. Doctors love pictures and get paid a lot for ordering and reading them. Over the years my friend has been subjected to countless and mostly unnecessary imaging studies with contrast dyes that have compromised his kidneys. It seems likely that renal insufficiency will kill him before his lung cancer does. He is also no longer eligible for additional lung-cancer treatments because his kidneys flunk protocol requirements. And along the way he has been prescribed several unnecessary medications that also hurt his kidneys. Everyone focused on the lung cancer; no one noticed the harm they were doing to the kidneys.

There have also been several close calls because he was prescribed multiple medicines by multiple doctors without coordination and due consideration of the drugs’ interactions and synergistic harms.

The mistakes were all easily preventable if anyone were minding the store and paying attention to the patient, not the lab tests. In any common-sense world doctors would care about risks and harms and wouldn’t always be rushing to order stupid and dangerous tests and treatments.

.. Read on in the original bog!

rob halkes's insight:

Everyone will have some example of how things can go wrong. or say less then well in care for health ... 

It is my own conviction that patients need to be assertive first, not just health literate. Professionals are professionals while they have  taken up the task to help and support patients with their conditions. First to that is explaining what they suggest and making sure the patient understands.. -

Just like you just can't expect a teacher to be ineffecive with pupils not knowing what they teach. -  In education that's a fact to start with..!

In health care, one cannot start from the fact that patients know what they have as a condition....


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Launch of first ever Health App Toolkit to help people understand and use health apps

Launch of  first ever Health App Toolkit to help people understand and use health apps | Patient Self Management | Scoop.it

From Patient View:

Launch of the first-ever toolkit to help people understand and use health apps
©PatientView Ltd 2014
Author: Tony Newbold
Editors: Clive Nead, Dee O’Sullivan, Alexandra Wyke
Designer: Mark Ansell

A clear, concise, simple manual to help patients and the public make the best choices and decisions about health apps, “Health Apps—a Toolkit to Help You”, is available in print and online. Launched today, Wednesday, 1st October 2014, at the European Health Forum Gastein 2014, and circulated to the Forum’s 650 delegates (who come from all over Europe and beyond, and who represent the key stakeholders of the European health policy community).

This Toolkit is needed to answer the many questions that patients and carers have about health apps
A soon-to-be-published study* by PatientView will reveal that the public are confused by the sheer number of health apps available (100,000), and are not sure that a particular health app will help them. Members of the public may also not trust health apps, because they do not know who makes the apps, or whether their health data would be secure on an app.

[*Source: “What do patients and carers want from health apps?” A July-October 2014 global survey of over 1,000 patients, conducted by PatientView in collaboration with Health 2.0. Survey results to be released Monday, 10th November 2014, at the 2014 Health 2.0 conference in London.]
 

“The myhealthapps’ Toolkit is a good initiative to empower citizens. It is the type of health-literacy project that the European Commission encourages.”

—Robert Madelin, Director General, DG CONNECT, European Commission


rob halkes's insight:

The first, researchbased toolkit for patients to help them select their health apps! Insightful and practical! See it online here


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Co-Creating Healtcare | Sustania - building the world of tomorrow

Co-Creating Healtcare | Sustania - building the world of tomorrow | Patient Self Management | Scoop.it

In Sustainia, the most important resource in the sustainable transition is you. In the guide to person-centred care, we have taken a closer look at the world’s healthcare systems and what it takes to make them person-centred.

What we understand by healthcare today needs to be redefined so that you become an active partner in creating health.

DNV GL and Sustainia are travelling the world this fall to explore how we can co-create healthcare.

The mission is to put the person, you, at center of the care. And to do this, we will identify, document and communicate solutions that can inspire a safer, smarter and more sustainable healthcare approach.

rob halkes's insight:

Sustania's inititiative is a great one to move people in health care to actually do some and relate with others to comparte and learn, how to do this. Implementation is key, as they say. And, it is. read on their website all about it.

As for the method of co-creating health care, this might help:

co-creating in health care !

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The Doctor’s Inbox — Healthcare Providers Use Technology to Communicate with Patients

The Doctor’s Inbox — Healthcare Providers Use Technology to Communicate with Patients | Patient Self Management | Scoop.it

Despite security and privacy concerns, a growing number of physicians are embracing digital technology in their communication with patients. That includes sharing information about services and wellness to a broad audience, and also corresponding directly with patients about their personal health issues.

The recent improvements start with physicians revamping their websites. This has allowed doctors to post essential information about which services they offer and to make appointment scheduling easier through patient portals. That includes streamlining the processes of rescheduling and sending reminders electronically instead of over the phone.

A common analogy that’s made is making the patient scheduling process similar to picking a seat for a flight through an airline’s website, says James Karpook, principal at The Chartis Group.

That mentality is expanding to include information about how to contact physicians directly to follow-up after an office visit.

“More and more physicians are communicating with their patients via email so that they don’t have to call in and be waiting on the phone to speak to a nurse or the physician,” says Karpook.

Another area where communications technology is helping doctors is in disease management. For example, patients who have congestive heart failure can use a device at home that links to a processor to capture real-time results. Physicians can then take immediate action when a problem arises.

Also, diabetes patients are using mobile apps to log their blood-sugar levels so healthcare providers can monitor them in real-time. Providers are also sending patients text message reminders to check their blood sugar and then have the data sent to the doctor’s office.

Social media is another growing digital frontier for physicians. Many are posting articles and sharing their expertise about wellness and healthcare innovation on Facebook, Twitter, and LinkedIn. “Social media is ideal to connect with patients collectively, but not individually,” said Dr. Kevin Pho to The Doctor’s Tablet Blog.

Dr. Pho is an advocate of doctors having protected social media time during the workday so they can write blog posts or create videos to be shared. That would force them to get more comfortable with the technology and possibly push ideas to another level. “Replacing a half-day session a week of seeing patients with social media time to create content would be a reasonable goal,” he said. “Healthcare leaders and administrators are the ones who can make that happen.”

Still, it’s the one-on-one electronic communication that will set the tone for the future of healthcare. More doctors are corresponding with patients through email and text messaging. Karpook also cites a next wave of physician concierge services that charge a monthly fee to allow patients greater access to physicians through email, instant messaging, or video chat. Making these channels secure and private is the biggest challenge ahead.

 “We’ll have to continue to find ways to ensure that electronic health information that’s shared is secure,” he says. “There needs to be the IT infrastructure to support it.”

To a great extent, electronic communication between doctors and patients will be driven by consumer preference. As more consumers begin to prefer electronic means for communication, healthcare organizations and physicians will have to adapt to accommodate them. Couple that with the bigger structural healthcare reforms that are promoting better communication between doctors and patients, and it’s likely that we’ll be seeing more progress in this area very soon.

“Perhaps in the coming years, when payment isn’t tied to the number of patients seen, communicating with patients can be emphasized, whether it’s through a phone call, email, or social media,” said Dr. Pho.




Via Plus91
rob halkes's insight:

Yes, the world of medicine and physicians is changing ;-)


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Lisette Pangilinan's curator insight, August 23, 2014 2:57 AM

Social media plays an important role in promoting health care and wellness. We are now empowered to take a role in our own health.

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Wolters Kluwer | Press | News | Survey: Americans Want Greater Control Over Their Own Healthcare

Wolters Kluwer | Press | News | Survey: Americans Want Greater Control Over Their Own Healthcare | Patient Self Management | Scoop.it
Wolters Kluwer is a market-leading global information services and publishing company focused on professionals.

(December 12, 2012)  — 

Philadelphia, PA (December 12, 2012) – According to a new Wolters Kluwer Health survey, 80 percent of consumers believe the greater “consumerization” of healthcare – or the trend of individuals taking a greater and more active role in their own healthcare – is positive for Americans. Survey data suggests many Americans feel that a greater role in their care is not only good, but necessary, with 86 percent of consumers reporting that they feel they have to take a more proactive role in managing their own healthcare in order to ensure better quality of care.

 

Most consumers also say they feel prepared to take on a greater role in managing their own healthcare, with 76 percent reporting that they have the information and tools to take a more proactive role in healthcare decisions ranging from choosing healthcare providers to researching treatment options. Despite feeling prepared, only 19 percent report that they have their own electronic Personal Health Record (PHR).

[..]

“With greater responsibility placed on patients to take a role in their own care, it’s essential that consumers have access to evidence-based tools and resources to make informed decisions about their care in partnership with their healthcare providers,” said Dr. Linda Peitzman, Chief Medical Officer, Wolters Kluwer Health. “Access to research-based medical information not only can positively impact quality of care, but it also can lead to improved doctor-patient communication and relationships.”

Survey findings showed that the notion of the “patient experience” is also gaining significance for many Americans. Three in ten adults (30 percent) want their patient experience to be the same as any other customer experience they have – such as shopping, hotel and travel experiences – complete with choices and control.

[..]


See report here


rob halkes's insight:

Already at the end of 2012 this survey was completed about the consumerization of health care. See the report here .

Now, in 2014, we can state that the trend is persevering.

Ehealth is now no more option, it is a must tp adapt to patients' wishes!

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Co-Creation in Health Care

Co-Creation in Health Care | Patient Self Management | Scoop.it

Experience co-creation in health care is an effective method to innovate value to patients in a personalized way, in collaboration with all relevant stakeholders.
It is intended to benefit patient...

rob halkes's insight:

Co-creation between all stakeholders in health care is certainly necessary to create sound and proper patient journeys in ehealth.


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Effects of diabetes self-management programs on time-to-hospitalization among patients with type 2 diabetes: A survival analysis model

Effects of diabetes self-management programs on time-to-hospitalization among patients with type 2 diabetes: A survival analysis model | Patient Self Management | Scoop.it

Patient Education and Counseling, Volume 95, Issue 1, Pages 111-117, April 2014, Authors:Omolola E. Adepoju; Jane N. Bolin; Charles D. Phillips; Hongwei Zhao; Robert L. Ohsfeldt; Darcy K. McMaughan; Janet W. Helduser; Samuel N. Forjuoh

Abstract Objective

This study compared time-to-hospitalization among subjects enrolled in different diabetes self-management programs (DSMP). We sought to determine whether the interventions delayed the occurrence of any acute event necessitating hospitalization.

Methods

Electronic medical records (EMR) were obtained for 376 adults enrolled in a randomized controlled trial (RCT) of Type 2 diabetes (T2DM) self-management programs. All study participants had uncontrolled diabetes and were randomized into either: personal digital assistant (PDA), Chronic Disease Self-Management Program (CDSMP), combined PDA and CDSMP (COM), or usual care (UC) groups. Subjects were followed for a maximum of two years. Time-to-hospitalization was measured as the interval between study enrollment and the occurrence of a diabetes-related hospitalization.

Results

Subjects enrolled in the CDSMP-only arm had significantly prolonged time-to-hospitalization (Hazard ratio: 0.10; p=0.002) when compared to subjects in the control arm. Subjects in the PDA-only and combined PDA and CDSMP arms showed no improvements in comparison to the control arm.

Conclusion

CDSMP can be effective in delaying time-to-hospitalization among patients with T2DM.

Practice implications

Reducing unnecessary healthcare utilization, particularly inpatient hospitalization is a key strategy to improving the quality of health care and lowering associated health care costs. The CDSMP offers the potential to reduce time-to-hospitalization among T2DM patients.

rob halkes's insight:

Focused and systematic self management programs work! Hopitalization maybe prevented. Inspiring reading.

ALSO: the image I used came from the "Arthritis Ireland" Project: "the case for self management" see here: http://bit.ly/1gKszKV


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Web 2.0 Chronic Disease Self-Management for Older Adults: A Systematic Review

Web 2.0 Chronic Disease Self-Management for Older Adults: A Systematic Review | Patient Self Management | Scoop.it
Web 2.0 Chronic Disease Self-Management for Older Adults: A Systematic Review


Background: Participatory Web 2.0 interventions promote collaboration to support chronic disease self-management. Growth in Web 2.0 interventions has led to the emergence of e-patient communication tools that enable older adults to (1) locate and share disease management information and (2) receive interactive healthcare advice. The evolution of older e-patients contributing to Web 2.0 health and medical forums has led to greater opportunities for achieving better chronic disease outcomes. To date, there are no review articles investigating the planning, implementation, and evaluation of Web 2.0 chronic disease self-management interventions for older adults.
Objective: To review the planning, implementation, and overall effectiveness of Web 2.0 self-management interventions for older adults (mean age ≥ 50) with one or more chronic disease(s).
Methods: A systematic literature search was conducted using six popular health science databases. The RE-AIM (Reach, Efficacy, Adoption, Implementation and Maintenance) model was used to organize findings and compute a study quality score (SQS) for 15 reviewed articles.
Results: Most interventions were adopted for delivery by multidisciplinary healthcare teams and tested among small samples of white females with diabetes. Studies indicated that Web 2.0 participants felt greater self-efficacy for managing their disease(s) and benefitted from communicating with health care providers and/or website moderators to receive feedback and social support. Participants noted asynchronous communication tools (eg, email, discussion boards) and progress tracking features (eg, graphical displays of uploaded personal data) as being particularly useful for self-management support. Despite high attrition being noted as problematic, this review suggests that greater Web 2.0 engagement may be associated with improvements in health behaviors (eg, physical activity) and health status (eg, HRQoL). However, few studies indicated statistically significant improvements in medication adherence, biological outcomes, or health care utilization. Mean SQS scores were notably low (mean=63%, SD 18%). Studies were judged to be weakest on the Maintenance dimension of RE-AIM; 13 reviewed studies (87%) did not describe any measures taken to sustain Web 2.0 effects past designated study time periods. Detailed process and impact evaluation frameworks were also missing in almost half (n=7) of the reviewed interventions.
Conclusions: There is need for a greater understanding of the costs and benefits associated with using patient-centered Web 2.0 technologies for chronic disease self-management. More research is needed to determine whether the long-term effectiveness of these programs is sustainable among larger, more diverse samples of chronically ill patients. The effective translation of new knowledge, social technologies, and engagement techniques will likely result in novel approaches for empowering, engaging, and educating older adults with c

rob halkes's insight:

Great inspiring review of self management interventions using web20 applications. Surely more research is needed. But let it inspire you to contribute! 

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Health apps: where do they make sense? A patient opinion-informed white paper

Health apps: where do they make sense? A patient opinion-informed white paper | Patient Self Management | Scoop.it

Conclusions of the first ever cross-stakeholder, pan-european seminar on health apps, held at the King's Fund on 28 October 2013.

 

The five key messages:

 

1. Overhauling healthcare systems–making them patient-centric

2. Engaging doctors in the prescribing of health apps
3. Overseeing quality standards for health apps
4. Ensuring that health apps remain of a high standard throughout their lifetime
5. Considerations for policymakers wishing to oversee health apps


Via Andrew Spong
rob halkes's insight:

Great Read!

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Andrew Spong's curator insight, March 18, 2014 5:17 AM

My POV:

 

1. Lip-service has been given to this idea since time immemorial, but there are few examples of such change having not only been instantiated, but maintained, and used to drive strategic direction. This is a systemic problem which I don't think will be resolved until we accept that 'reskinning' existing structures is inadequate to the needs of truly patient-centred healthcare design.

 

2. Unenforceable, but necessary. A paradox that may only be resolved through cross-constituency digital peer-review (imagine the degree of insight and involvement if there were a '#FOAMed meets #bcsm' for every disease area)

 

3. See above. 'Regulation' as we understand it will neither be viable, nor enforceable. Whether we want a 'top layer' of heavy-hitting health faculty acting as a secondary filter before content enters the App Store (Apple) and Play (Google) is another question. I'm not sure if it's even a good idea (re-replacing 'evidence with eminence' again) unless it's largely automated using a Watson-like AI with a complete picture of the existing gold standard in all evidence.

 

4. Predicated upon the expectation that they're of a high standard at launch, which simply isn't the case.. The majority of health-related content available as apps is of low quality and relevance.

 

5. Re. the first paragraph of the synopsis of this section: 'The consensus at the seminar was that the adoption of smartphone technology will not create health inequalities, but rather can increase healthcare sustainability'. I strongly agree with this line of reasoning, and feel that the 'digital divide' debate needs to be answered once and for all.

 

My answer to this last point: principally, this is a period of transition, and no plans should be made to accommodate perceived (and usually unsubstantiated) inequalities in terms of access to health information which will diminish over time -- although NB levels of health literacy are another matter. Where digital exclusion exists (and such conclusions often overlook the 'one step removed' access to digital health via family members, friends, and carers) the savings made from the efficient implementation of lower-cost digital health initiatives (and there really should be some; if there aren't, questions need to be asked about the organisation under review) should be reinvested in targeting hard-to-reach communities in an offline setting.

Marisa Maiocchi's curator insight, March 21, 2014 2:55 PM

Aportes y conclusiones del primer seminario pan-europeo sobre apps de salud. Muy interesante.

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“Think, think, think”: message to European Cancer Patients Coalition AGM | e-Patient Dave

“Think, think, think”: message to European Cancer Patients Coalition AGM | e-Patient Dave | Patient Self Management | Scoop.it

View mHealth presentation to ECPC Annual General Meeting on Vimeo. This is a quick first post to get this online before the meeting finishes. I hope to add

I’m in Brussels at the AGM (Annual General Meeting) of the European Cancer Patients Coalition, an association of over 400 cancer patient organizations. They are organized, they’re methodical, they’re action-oriented, working on health policy, drug development processes, patient involvement in clinical trials, and anything else in the patient’s interest. I was invited by Mrs. Kathi Apostilidis, vice president of ECPC and a long-time member of the Society for Participatory Medicine. She is also known as a force of nature.

The slides are available for viewing and download on SlideShare. More later.

 
rob halkes's insight:

Great slide deck from Dave the Bronchart (@e-patientdave)and even greater insights from his reflection added to the presentation from his hotel room!

He juxtaposed:

  1. the very need patients have to learn about their condition(s) and about what could be done about it. Also indicating the effect of this learning process: patients being experts on their own condition and so be the ideal co-producers of new research, both in formulating hypotheses and in design the research;
  2. And, a more fundamental point: how to judge new outcomes of medical studies when new insights turn “facts” into new lights and appear to be not as ever lasting as the research project would indicate.

 

We surely need to rethink both medical practice and medical research.
“Think, think, think!” is indeed an upgrade of “let patients help” into a new and more fundamental level ;-)

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Taking a participatory approach to development and better health. Examples from the Regions for Health Network (2015)

Taking a participatory approach to development and better health. Examples from the Regions for Health Network (2015) | Patient Self Management | Scoop.it
This publication documents the experiences of participatory approaches for development and better health taken by Region Skåne (Sweden) and three other regions, described in case studies: the Autonomous Province of Trento (Italy), the Autonomous Community of Andalusia (Spain) and Wales (United Kingdom).
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Participatory Care Examples by WHO

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Respecting patients is associated with more patient-centered communication behaviors in clinical encounters - Patient Education and Counseling

Respect is associated with positive and patient-centered communication behaviors during encounters.
rob halkes's insight:

Respect is associated with positive and patient-centered communication behaviors during encounters.

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New Website on Medications: Iodine

New Website on Medications: Iodine | Patient Self Management | Scoop.it

- Find what works - information about medications

from medical experts - and people like you.


Side effects, reviews, tradeoffs, and tips about thousands of drugs, built from clinical research and real life experience from people like you.

The database, which launched In September last, uses Google surveys to get consumer information on a wide variety of both over-the-counter and prescription drugs.

Users can search a specific drug from Aleve to Xanax and see how people generally feel about its efficacy, about the side effects from actual users, tradeoffs, comments from users, warnings, costs, and a readable versions of the drug’s package insert.

Iodine uses Google Consumer Surveys, of which they have 100,000 ones completed, and they add to their website every day. Iodine also uses data from clinical research, pharmacist surveys, adverse event reports made to the Food and Drug Administration (FDA) and the National Average Drug Acquisition Cost (NADAC)–which reports the average wholesale price pharmacies pay for over 20,000 drugs.

See also here and here

rob halkes's insight:

"Iodine" looks like a sharp curator of information on Medications.

It is actually a database on information about medications both from the research/medical site and from the users/patients' site: experiences and opinions. In the presentation of the data, there is a  partition between sources of information.

It's just only English and US based. A nice example to what is possible on information about medication to users!


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Data for health - Blog by Susannah Fox

Data for health - Blog by Susannah Fox | Patient Self Management | Scoop.it

Last week I was part of the first community meeting for Data for Health, a program sponsored by the Robert Wood Johnson Foundation. It was held in Philadelphia on October 30 [..].

You can catch up on the #data4health tweets thanks to Symplur — and there were some good ones [..]

Once again I was struck by how wide open the definition of “data” can be. I shared the following data points, based on a Pew Research study I led:

  • 7 in 10 U.S. adults track a health indicator for themselves or someone else.
  • Half track regularly, half track when something comes up.
  • Technology plays a minor role — about 1 in 5 trackers use a medical device, an app, or any other digital tool.
  • 1 in 3 trackers uses paper and pencil to take notes.
  • Fully half of trackers say they do so in their heads (and that includes me).
  • 1 in 3 trackers share their data with family members or clinicians, but many do not. They are asking secret questions and we must not only respect that, but build it into our planning.
  • 45% of U.S. adults live with a chronic health condition; of those, 8 in 10 track some aspect of health.
  • Tracking data is not a hobby for this group, but rather a way to see themselves more clearly. This might be true of public health in general — data is a mirror we try to use to make good decisions, based on facts.

[..]

My favorite insight of the day came from someone who, when discussing who should be part of the design process for health data systems, said that front desk workers are the ones who know the community best.

Read the full blog here !

ALso be sure to see the Pew study here

rob halkes's insight:

Indeed, so many people do track some health parameters themselves: the "ground" for many interest in health apps. But when it comes to relate with these data to their "formal" health care providers, .. we get into a complete other realm. It seems even to be so that patients try to avoid this exchange. .. So many things need to be accommodated at the site of the ...

indeed, the providers, of course.
One of the implications of ehealth.
(see for instance here )

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The Wearable Future: Will Consumers Make the Move Soon?

The Wearable Future: Will Consumers Make the Move Soon? | Patient Self Management | Scoop.it
Is that an app you're wearing or are you just happy to track your progress? This adulteration of Mae West's classic come-on is most likely justified.

Just Just recently, International Data Corporation issue the prediction that wearable device shipments worldwide would rise more than 488.9 percent between 2014 and 2018, rising from 19.0 million to 111.9 million.

It’s a rapidly changing marketplace.

“There’s been talk recently about the future of notifications on such devices, fashion brands such as Tory Burch and Diane von Furstenberg (DVF) have partnered with tech companies to make wearables more stylish, and GE is testing Google Glass to see how the technology could help boost efficiency in its car factories,” reports eMarketer.

So far, it appears that people like using mobile health and fitness apps to get in shape — and that wearables will be the next rung on the ladder.

Polling by Makovsky Health and Kelton Research in March documented high interest in wearable health and fitness devices: 81 percent of U.S. internet users said they would use one. Tracking fitness was the top reason, cited by 48 percent. Monitoring personal health issues came in second, and tracking diet and nutrition ranked third.

But developers could be waiting a while before the trend becomes widely accepted. A June, 2014 Opera Mediaworks study showed that only 2.5 percent of smartphone users said they used wearable fitness and activity trackers while exercising. Wearables may be the future, but “do-all smartphones are still No. 1 when exercisers need to pump it up,” eMarketer asserts.



rob halkes's insight:

Insiders in patients' preferences are prudent in asserting patients' wilingness to use health applications. It is suggested that patients like best those mhealth apps and/or wearbales that they "can keep to themselves", without 'formal' oversight by professionals or their physicians. For the time being it seems they want to be sure that their data are shared at that moment they themselves decide to do so. This also explains patients' reservations to spontaneously use PHR ro demand insight into their EHR's. Sharing needs trust.

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10 Lessons From Empowered Patients - USNews

10 Lessons From Empowered Patients -  USNews | Patient Self Management | Scoop.it

They've been there – and here's what you can learn from their experiences.

It’s your body – your tests, your treatment.

Your disease. But grasping control of your patient experience, when you’re surrounded by white coats and intimidating medical lingo and scary diagnoses, can be hard. U.S. News talked to 10 people who have a lot of experience being patients – or have advocated for a patient – about the most important lessons they’ve learned about patient empowerment. Their responses:

  • AnneMarie Ciccarella
  • Trisha Torrey
  • Alexandra Albin
  • Ben Heywood
  • Matt Cavallo
  • Marisa Zeppieri-Caruana
  • Jullia Hallisy
  • Dave deBronkart
  • Kerry Sparling
  • Tiffany M. Peterson

See them all here !

rob halkes's insight:

10 Lessons from empowered patients. Check them out!

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Medication management goes digital

Medication management goes digital | Patient Self Management | Scoop.it
Medication management for patients, as well as their physicians and pharmacists, is going digital.

Much of this is driven by the changing demographics of patients and today’s health care providers, says Nancy Green, managing principal, healthcare, of  Verizon Enterprise Solutions.

“Patients want technology that they are familiar with, and so does the younger generation of physicians,” Green says. “A CEO of a major health care organization recently went to his CIO and said, ‘Whatever IT the doctors or patients want, give it to them. Make it happen. I don’t care how.’”

Since doctors provide the billable services for hospitals, and patients (or their insurance companies) pay for them, this scenario is playing out all over the U.S. [...]

“Being able to present patient-centered information by way of a web-based graphic interface would likely provide the information and answers that many demand,” says Dr. Mark Leavey, an internist who sees patients at Lutherville Personal Physicians in Lutherville, Md., a satellite of Mercy Medical Center.

“Clearly, the paper printout supplied with medications by pharmacies may have all of the information, but it is presented in a form that is a challenge for any but the most well-versed to read.” 

Scanning a QR code directs users to information portals that display the prescription data in layers, with the most direct and basic facts first, followed by commonly asked questions and a video of proper ways to use the medication. [...]

“The system also includes an application that users can download on their phone or tablet for use in helping with chronic conditions by managing their taking of medications or monitoring other health-related tasks they must perform daily,” Hart said....

rob halkes's insight:

"They must perform daily .."  Sure! We need to focus at medication management, but: it will still be an issue as to what would be the best way to do it. We still don't know too much about how patients perceive and experience well intended interventions to their compliance. There's a thin line between facilitation and interference, yes, even the feeling of being meddled around with..
So, as we know: technology is just one, but making the right use of it for all parties concerned is definitely another matter.

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"Patient Engagement" in Health Care: Literature Review | Journal of Participatory Medicine

"Patient Engagement" in Health Care: Literature Review | Journal of Participatory Medicine | Patient Self Management | Scoop.it
The term "patient engagement" is at risk of becoming a vague buzzterm, as it lacks a shared definition. This paper aims to pinpoint the key conceptualizations of "patient engagement" from recent academic literature, in order to deepen understanding of the term.
rob halkes's insight:

Read it - and think about what you  "mean" when you talk about "patient angagement" - Informative!

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Josefin Y-Dahlqvist's curator insight, September 2, 2014 4:08 PM

The Challenges of Conceptualizing Patient Engagement in Health Care

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" Flip the Clinic " | Maybe we all "flip" ..

" Flip the Clinic " | Maybe we all "flip" .. | Patient Self Management | Scoop.it

"How "Flipped" is your health practice?"

Flip the Clinic is a new Robert Wood Johnson Foundation project to re-imagine the medical encounter between patients and care providers.

What Exactly is Flip the Clinic?

Our goal is not only to create a specific set of practices that will improve the medical encounter, but also to inspire others to invent new ways to get more out of the clinic visit, too.

The first batch of resources for patients and providers launched in early 2014. But we’re not stopping there. The future of Flip the Clinic will be built from patient, care provider, and administrator input and ideas; it will be built from the advice of those willing to try something bold. We hope that FliptheClinic.org will serve as a hub for innovative ideas already happening as well as a clearinghouse for what works and what doesn’t in the doctor-patient encounter. Flip the Clinic is an ongoing conversation, powered by your participation.


The traditional doctor’s visit is ripe for reinvention—both because it is such a valuable interaction, and because we know there are ways to make it better.

We believe that new tools, technologies, and strategies can empower people to be more informed and more engaged when they walk into the doctor’s office and better equipped to improve their health when they walk out the door. And we believe that doctors, nurses, and other care providers can improve the ways they communicate and engage with patients during visits. We believe they can take advantage of new tools for monitoring, supporting, and connecting with their patients outside of the office, too.

We think that by tapping into these strategies, we could to turn the provider-patient interaction on its head—and promote better, more meaningful relationships while doing so.



rob halkes's insight:

"Flip the Clinic" , or perhaps: Flip health care, seems to grow a new community/movement around better interaction between doctors and patients. A lot to be said of course, but I like the very attention to behaviour of the two parties here.

It will touch all issue of care, like interaction, communication, treatment, building and business. But one must go one stap at a time. I like it because it enters the controversial arena of medine and care interaction. The "flips" are very much to the point in my opinion, and they will draw attention to where it should be. It is just the other goal of disrupting care, not just the Health20 technology, but also engaging and participating care.

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Addressing health literacy through clear health communication: A training program for internal medicine residents

Addressing health literacy through clear health communication: A training program for internal medicine residents | Patient Self Management | Scoop.it
Patient Education and Counseling, Volume 95, Issue 1, Pages 76-82, April 2014, Authors:Jamie A. Green; Alda Maria Gonzaga; Elan D. Cohen; Carla L. Spagnoletti


Abstract 

Objective

To develop, pilot, and test the effectiveness of a clear health communication curriculum to improve resident knowledge, attitudes, and skills regarding health literacy.

Methods

Thirty-one internal medicine residents participated in a small group curriculum that included didactic teaching, practice with a standardized patient, and individualized feedback on videotaped encounters with real patients. Outcomes were assessed using a pre-post survey and a communication skills checklist.


Results

Mean knowledge scores increased significantly from 60.3% to 77.6% (p<0.001). Residents also reported increased familiarity with the concept of health literacy (mean response 3.2 vs. 4.5 on a 5 point scale), importance placed on health literacy (4.2 vs. 4.9), frequency of considering health literacy in patient care (3.3 vs. 4.0), and confidence in communicating with low literacy patients (3.3 vs. 4.1) (all p<0.001). Use of plain language increased significantly from 33% to 86% (p=0.023). There were nonsignificant increases in the use of teach-back (0–36%, p=0.116) and encouraging questions (0–14%, p=0.502).


Conclusion

Training in clear health communication improves resident knowledge, attitudes, and skills regarding health literacy.

Practice implications

The increased use of clear health communication techniques can significantly improve the care and outcomes of vulnerable patients with limited health literacy.


rob halkes's insight:

Good to have prove that health literacy is crucial and practically teachable to medicine residents. One just has to to do it..;-)

Quote from the article: "A key strategy to reduce the impact of low health literacy is through improved provider-patient communication"

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Health researchers see unique opportunity in self-tracker data | mobihealthnews

Health researchers see unique opportunity in self-tracker data | mobihealthnews | Patient Self Management | Scoop.it

As the number of self-tracking health and fitness tools available to consumers continues to climb, a persistent question has been whether the data they collect might be useful to health researchers. Along with that: Are people who self-track comfortable sharing their data with researchers?

A new, must-read report from San Diego’s California Institute for Telecommunications and Information Technology (Calit2), funded by the Robert Wood Johnson Foundation, explores these and other questions.

Based on a survey with hundreds of self-trackers, a majority — 57 percent — said one critical assurance they would need before agreeing to make their self-tracked, personal health data available to researchers was that their privacy would be protected. More than 90 percent also said it was important that their data remained anonymous. Respondents said they’d be more comfortable sharing data if they knew it was only going to be used for “public good” research. ..


One open-ended survey that the report’s researchers posed to self-trackers found that 13 percent of respondents specifically mentioned an aversion to commercial or profit-making use of their data, according to the report. One respondent wrote: “It depends who gets it. Research using these data will be instrumental in the future of personal predictive services, but also for that reason are likely to be exploited by marketers and the politically short-sighted. Thus I would like transparency for who has access to my data.”

Among the almost 100 health researchers interviewed for the report, 46 percent said that they had already used self-tracking data in their research previously. Some 23 percent reported that they had already worked with digital health companies that offer apps or devices to consumers to track their health. Overall, the researchers interviewed for the report were “generally enthusiastic” about the prospect of using self-tracking data in the future — 89 percent agreed or strongly agreed that such data would prove useful to their research efforts. Almost all of those researchers surveyed said that kind of data could answer questions that other data could not. ..


rob halkes's insight:

The research results stresses two things:

- The serious issue of privacy and data safety: clients indeed bear great value to what their own opinion tells them to want regarding the (non)use of their data: every idea as in "Well they wouldn't bother because they would not know" is a highly misguided starting point (See how the purchase of whatsapp by Facebook initiated a change of messaging app by lots of whatsapp users);

- As health persons are already active so much with their own health then they will get more insights into their own body than physicians would have based upon their general knowledge of medicine. Imagine what that would imply for the physician - patient interaction. The trend to disrupting health care will be reinforced.

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