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OpenNotes & Transparency: Ongoing conversation

OpenNotesopen-notes logoOne of our MD members, Peter Elias, tipped us off on our listserv to a post on from a clinician who was expressing concern about the wisdom of OpenNotes, and fully sharing information with patients in general.

Peter posted a comment, which we thought worthy of its own post, given that it speaks clearly, from the physician perspective, of the philosophy of participatory medicine and data-sharing between patients and their doctors.

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The Iceberg Waiting for Your Health Care Data

Iceberg_ccThe Heartbleed web security exploit was first publicized several weeks ago. In the time since then, numerous web-based services have let their users know (some more clearly than others) whether and how their data security was compromised by this OpenSSL flaw that has been open for about two years. This is one flaw, one exploit, but on a scale of 1 to 10, it has registered as an 11 on our collective consciousness. Fred Trotter notes in the MIT Technology Review that other similarly worrisome exploits do not get our attention in the same way, and that more health data leaks are likely in our future. He also cites others’ observations that many health IT vendors are not currently equipped to respond effectively to such exploits in a timely manner.

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Health Information Exchange: We’re not there yet

This post was originally a comment by SPM member Jeffrey Harris on our C-ME post from April 3, 2014. Jeffrey has a long history as a clinician, a health IT strategist, and as a patient. We thought his commentary deserved its own post.

Jeffrey Harris photoI had the opportunity to moderate a PCPCC e-Health Public Meeting recently. We interviewed Dr. David Kendrick from the Oklahoma My Health Network. I believe they are a good example of the top 10% of HIE implementations for quality and value added to most stakeholders.
The architecture makes sense as the HIE brings services that eliminate administrative costs among providers, policy experts, payers and even patients.

They are using HealthVault as a PHR which, as you know, allows patients to create their own information-sharing profiles as well as connect to lab hubs, pharmacy hubs etc.

Your comment on a regulated banking model is something I would support. Here is the reason: As a healthcare executive with clinical program skills and HIT innovation patents I would be short sighted unless I add in my 47 years as a person with diabetes and associated co-morbidity.

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It’s time to C-ME (see me): Consumer Mediated Exchange

By Mark Branning and Brad Tritle

Mark Branning

Mark Branning is Principal at mdb Healthcare IT Solutions, Adjunct Professor at National University, a member of the HIMSS  Connected Patient Committee and co-chair of the Connected Patient Community.  Mr. Branning has spent 33 years in the healthcare information systems industry and is a consultant specializing in patient engagement, health information exchange (HIE), interoperability, and product positioning.

Brad Tritle

Brad Tritle is Global Product Owner for Chronic Disease Management at vitaphone health solutions, co-founder of eHealth Nexus, former CEO of eHealth Trust Arizona, former executive director of Arizona Health-e Connection, and has served as a consultant to ONC on patient engagement for health information exchange.  He is a member of the HIMSS Connected Patient Committee, co-chair of the Connected Patient Community, and chair of the HIMSS Social Media Task Force.

This is a cross-post of a  HIMSS blog post and it is posted here with permission. 

Though the term Consumer Mediated Exchange, which we suggest shortening to “C-ME” (see me), has only recently come into the vernacular, due to its official standing as one of ONC’s three approved forms of Health Information Exchange (HIE), but in a non-electronic way has been around for quite some time (From the Office of The National Coordinator: The Strategy for Advancing the Exchange of Health Information).  In fact, one of the authors recalls a conversation between two university students nearly 30 years ago – one a veterinary student and the other pre-med – in which the vet student made the case that a vet must be a better diagnostician than a medical doctor, as the lower animals have no way to personally share a medical history or clearly communicate symptoms!

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SPM loves Flip The Clinic – we’re an “ally”

Flip The Clinic logoThe Society for Participatory Medicine enthusiastically supports this new, transformational initiative from the Robert Wood Johnson Foundation: Flip the Clinic. (Don’t you love the logo? Turning the clinic on its ear?)

It’s utterly engaging and empowering to patients, because it puts information in the hands of the patient and family – outside of the clinic visit, where we can study it at our own pace. Plus, it radically re-optimizes the “face time” of the visit, by offloading (or “pre-loading?”) an important part of the visit: knowledge transfer from clinician to patient. The clinician prescribes information for us to learn before the visit, based on the topic of the visit – so we spend our face time asking questions, instead of wishing after the visit that we had more time.

At the bottom of the FlipTheClinic home page is a list of “ally” organizations. We’re one:

Flip the clinic allies

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An angry veterinarian says “I don’t understand…” (Reprise five years later)

It’s five years since the ARRA/HITECH legislation was passed that pretty much mandates that American medicine has to computerize. Policies created since then have been enormously effective at moving adoption forward. We still need vast improvements of the user interface, but things are moving in the right direction.

Five years ago I myself was trying to figure out what to say about the garbage I’d discovered in my own medical record – actually the garbage was in my insurance billing history. That period on this blog was full of explosions. The uproar led my wife to post this on April 5, 2009. It’s worth revisiting.

From my wife:

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Erin Moore: “Your message did not fall on deaf ears.”

Erin Moore profile pictureLast week SPM member Erin Moore (see her previous posts) handled an opportunity in Washington really effectively, and she got heard. Here’s a cross-post of her news, with permission, from her blog 66 Roses.

Last week I traveled to Washington, DC for two meetings. One was on the important role that patients & caregivers plan in understanding medication adherence, and the other was on patients and caregivers being involved as disruptive innovators in healthcare; both topics very close to my heart. While I was reimbursed for my travel expenses (less alcohol), I was not compensated for my time. I struggle with this. Part of me gets angry because my time is valuable, to a lot of people, and I want these folks to see and appreciate that. The other part of me wants to be heard, no matter the compensation.

During one of the meetings, I participated as a panelist and shared on the role that I play on our healthcare team. I view myself as a partner, and I work with different tools that our doctor has recommended (medications, medical devices) and with tools that I’ve found or created to manage Drew’s health as best I can. I think that our message was well received, that by partnering in care, meeting patients where they are rather than where you want them to be, has meaning. And patients who are meaningfully engaged in their own care have a better chance at a good outcomes.

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“Imagine someone had been managing your money and you thought you weren’t qualified.” (Reprise five years later)

Five years ago last week, I posted this. A lot has changed since then. Next week I’ll be re-posting what happened next, back then. The subject is still just as valid, so do think about it. Here’s a “reprint”:

I want you to think about something for a few days.

Imagine that for all your life, and your parents’ lives, your money had been managed by other people who had extensive training and licensing. Imagine that all your records were in their possession, and you could occasionally see parts of them, but you just figured the pros had it under control.

Imagine that you knew you weren’t a financial planner but you wanted to take as much responsibility as you could – to participate. Imagine that some money managers (not all, but many) attacked people who wanted to make their own decisions, saying “Who’s the financial planner here?”

Then imagine that one day you were allowed to see the records, and you found out there were a whole lot of errors, and the people carefully guarding your data were not as on top of things as everyone thought.

I’ll be back.

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Digital Communication and m-Health in Developing Nations

Approximately 98 % of the world’s population are now owners of cellphones, including many adults in remote, hard to reach locations. This proliferation of mobile devices has the potential to improve our ability to diagnose and track disease; to tackle and disseminate timelier, more actionable public health information; and provide expanded access to ongoing medical education and training for health workers in developing nations.

This was the essential message of  a speech that I presented at the United Nations 58th Commission on the Status of Women,  at a session sponsored by the Global Alliance for Women’s Health and entitled: “How Digital Communication Impacts Health Care in Developing Nations,”

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Detecting Emotional Contagion in Massive Social Networks (PLOS One)

Correlation with friends' emotions

Graph showing the spread of feelings among Facebook friends: positive and negative messages each correlate strongly (left side), and positive-negative mismatches have weak correlation (right side). And all this because of reactions to rainfall!

This isn’t directly related to participatory medicine per se, but for students of the social web and “health is social” factors, this will be fascinating and important. (In my speaking work, it’s always useful to cite new research that sheds light on how social connections work and how the internet affects things.)


Many here are familiar with the work of Nicholas Christakis (@NAChristakis) and James Fowler (@James_H_Fowler), who’ve documented the substantial health effects that come from who you know. (We wrote about them several times in 2010.) This is such a strong effect that it alters our thinking on how to solve public health issues; the most astounding to me was that your odds of being a smoker depend more on the behavior of your third order connections than on your genetics or family. (Your own probability of being a smoker depends not just on whether your friends smoke, not just on whether their friends smoke, but on whether their friends’ friends smoke … that is a bigger influence than your own genetics.) Same for obesity.

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