Health 2.0

Ur Doin It Wrong

CindyThroop

By CINDY THROOP

Susannah Fox aptly illustrated what is happening in health care during the ‘The Patient Is In’ panel of the Health 2.0 conference with some amusing LOLCat pictures captioned “ur doin it wrong.” Put simply, when it comes to involving patients in health care and health information technology, chances are, ur doin it wrong.

When I was at the Fall 2008 Health 2.0 conference a year ago, someone asked me, “where are the patients?” Well, I didn’t see any there, but without a doubt, patients made their debut at the Spring 2009 Health 2.0 conference in Boston. When ePatient Dave spoke to the audience from the balcony, it represented a symbolic shift in health care. So, is the Health 2.0 conference doin it wrong? I don’t think so. Is there room for improvement? Sure.

As Trisha Torrey noted during the patient panel, while it’s nice that patients had their own panel, patients should be on every panel. Good point and well said! I do, however, think it is important to acknowledge that the Health 2.0 conference did a great job and has set a new standard for patient participation.

Months of preparation and work went into a video project documenting patients’ use of and experimentation with Health 2.0 services to manage their health. Thank you to Indu Subaiya and Lizzie Dunklee for truly putting patients at the center of Health 2.0 with that project. It will be interesting to see how upcoming conferences, especially those that claim to be about patients, measure up.

If you are curious about the patient revolution (you’ve only seen the tip of the iceberg), read Sarah Greene’s e-patients.net post: Participatory Medicine as Revolution! Think Critically! Communicate! Revolution is not about marketing hype and conferences with the word “patient” or “ePatient” in the conference name.

The days of 1.0 medicine and health care are over. Things will never be the same. You can join the revolution or get left behind. Kudos to the Health 2.0 team for supporting the patient revolution in health information technology.

Cindy Throop is a University of Michigan-trained social science researcher specializing in social policy and evaluation.  She is one of the few social workers who can program in SAS, SPSS, SQL, VBA, and Perl.  She provides research, data, and project management expertise to projects on various topics, including social welfare, education, and health. www.cindythroop.com

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robertCindy ThroopAlex BettencourtBart de Witte / @swisshealth20Susannah Fox Recent comment authors
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Cindy Throop
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ePatients are not more worthy than face-to-face patients. To some degree, these terms are used interchangably. ePatients (as in electronic patients) started out as paper/face-to-face patients and still see clinicans in person. From e-patients.net: Tom Ferguson coined the term e-patients to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He envisioned health care as an equal partnership between e-patients and health professionals and systems that support them. The patient/epatient movement is more broadly about patients taking a more active role in their health care. This may be as simple as learning to… Read more »

robert
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robert

Why are e-patients considered more worthy than p(aper)-patients or f(acetoface)-patients?

Cindy Throop
Guest

Sherry, you picked up on my not-so-subtle reference to marketing hype around ePatients. Long ago, I lost track of how many times I’ve heard terms like patient-centered. Unfortunately, it would be much easier to count a list of tools (or conferences) that are actually patient-centered. My fear is that so many people are using the term (minus the walking the talk part) that the words “patient-centered” will become meaningless. If you’re wondering if something is truly patient-centered, look at its origins. Did it (using CureTogether as an example) begin out of a desire to make sense of – and hopefully… Read more »

Alex Bettencourt
Guest

It’s nice to hear that the voice requesting patient perspective products/service is getting stronger.
Here at RememberItNow! we consider our service to be one of the first patient centric software companies for personal health care management. Our service features SMS medication reminders and a private care community.
Cindy, we would love to have you insight on RememberItNow! And our CEO/Founder would love to share her story on why RememberItNow! was created after taking care of her father.
http://www.rememberitnow.com
Hope to hear from you soon!
Alex Bettencourt
abettencourt@rememberitnow.com

Bart de Witte / @swisshealth20
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Bart de Witte / @swisshealth20

By definition e-patients are equipped, enabled, empowered, engaged, equals, emancipated and experts. It is difficult to ignore that e-patients open up opportunities for all stakeholders within the healthcare system. In an early stage these stakeholders might look at social computing as a list of technologies to be deployed as needed – a blog here, a podcast there – to achieve a marketing goal. But even pharmaceutical companies will look for a more coherent approach, and will determine what kind of relationship they want to build with e-patients, based on what they are ready for and within their legal/regulatory limits. Dell’s… Read more »

Susannah Fox
Guest

Thanks, Cindy, for a great recap of our panel. Although this was the only dedicated patient panel, I would say that the patient perspective was represented throughout the event. For example, Alex Carmichael of CureTogether qualifies in my mind as a patient voice. California HealthCare Foundation did an excellent job of including patient perspectives in one of their 2008 conferences, which I wrote about in these two posts: Patient Voices at CHCF’s Chronic Disease Care Conference http://e-patients.net/archives/2008/12/patient-voices-at-chcfs-chronic-disease-care-conference.html Doing Our Best to Blow Your Minds http://e-patients.net/archives/2009/01/doing-our-best-to-blow-your-minds-emerging-trends-in-chronic-disease-care.html I’ll take the liberty of re-posting CHCF’s Caron Lee’s “how to” comment here: To identify… Read more »

Sherry Reynolds
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Cindy raises a really good question about where or not the e-patient is simply becoming a marketing technique or if in fact we are designing a system around their needs. At its core health care starts with conversations that happen between providers and consumers/patients and their family members. Health IT allows that “conversation” to take place in new locations, via new medium with new players and in asynchronous ways. It is the one task that will always happen and in order to have a patient centered healthcare system consumer/members need to be involved in every step of this process and… Read more »