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Patients Invited! Health Informatics Conference seeks Patient Participation

An international conference addressing information technology and communication in health (ITCH) will be held February 26 – March 1, 2015 in Victoria, British Columbia, Canada.

Professor Stephen Hawking’s statement, “we learned to talk, we learned to listen, we unleashed imagination” provides the motivation for this year’s conference.

The main conference themes are:

  1. Patients Talking
  2. The Profession Listening
  3. Services Unleashing the Imagination

Patients are encouraged to submit papers that provide their own stories and insights. Concern is not the formal style, but descriptions of how patients can communicate with clinicians. Most importantly, we are interested in your ideas.

Conference Website:

Instructions for Patient Perspective Papers

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New in JoPM: “I No Longer Have to Go to See the Doctor:” How the Patient Portal is Changing Medical Practice

SPM co-founder Charlie Smith (Charles W. Smith, MD) was “Doc Tom” Ferguson’s own physician, and currently serves as co-Editor-in-Chief of our Journal of Participatory Medicine. He’s just published a brief but important editorial in the journal. It begins (emphasis added):

Click to visit the article

“Not long ago, the only options my patients had for communicating with me were to come in to the office or relay a message through the office staff. The result is a cumbersome system that most patients avoid using unless there is a major problem or crisis to address.

“But, since recently introducing the patient portal in our electronic medical record, my practice has changed substantially. My patients tell me it’s for the better. Admittedly, there is the additional daily burden of responding to lab results, refill requests, and patient questions. But each of these is also a major improvement in efficiency and effectiveness of information flow, which is fundamental for any patient who aspires to be “’participatory.’”

He goes on to describe the challenges as well as the benefits.

If you (patient or provider) are starting to use a portal, I suggest you print this editorial and share it with others:

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Uri Goren TedxHIT video: Patients are Not Empty Carriages

Uri Goren is the General Manager of e-Pochonderiac a blog about healthcare and digital technology and also a digital health consultancy and agency working in Israel to support digital health in the local health and pharmaceutical industry and to promote the roll of the patient in the healthcare ecosystem. This venture has begun from a professional standpoint as a communication and digital professional working with industry and in it for the past 13 years, but also from a personal standpoint as one who accompanied his father in his battle with cancer. Uri holds a B.A in Communication and Management from the College of Management and an M.A in Philosophy and Digital Culture from the Tel Aviv University. Uri is a member of the Society for Participatory Medicine and the Israeli chapter of Health 2.0.

Uri presented a talk at TEDxHIT: Uri Goren: Patient are not an empty carriage Here’s a brief description about the talk:

Through my personal experience as a caregiver for my father during his fight with Lymphoma and also my professional experience I came to realize that patients hold the key to transforming healthcare. In this talk I try to bring this point through a metaphor taken from the history of Israel, and also emphasize the role of digital tools as a having a key role in the transformation needed.



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Via @Cancer101: 10 things every patient needs to know

A handy one page chart from our Past President Sarah Krug through Cancer101 summarizes the best way to become an e-patient:

Here are a few points:

  1. You have a story to tell. Don’t be afraid to tell it.

  2. Make sure to write down and ask questions.

  3. Know your options so you can make informed decisions…



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Aging & e-Patients: Challenges and Opportunities in Geriatrics

Leslie_KernisanGuest post by SPM member Leslie Kernisan, whose words first appeared here in a September interview at Medicine X: “Leslie Kernisan (Twitter @GeriTechBlog), a geriatrician who’s deeply interested in and committed to enabling elders and caregivers through patient and family engagement.” (SPM members are invited to submit guest posts; guidelines are here.)

Leslie is this week’s guest on the #HCLDR Tweetchat, Tuesday, May 6, at 5:30pm PDT (8:30 ET). (This is her post on the HealthCare Leader Blog.)

Leslie writes, “We’ll be talking about how we might bring more geriatrics health information to older adults & their caregivers, and other aspects of adapting the e-patient approach for an aging population. Hope you can join!”

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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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