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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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 feel comfortable to ask your doctor a question during an office visit.
Why are e-patients considered more worthy than p(aper)-patients or f(acetoface)-patients?
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 alleviate – the chronic pain of a loved one? Or as in the case of change:healthcare, did it originate in a promise made to your parents to fix the health care system?
Bart, I think what is key with larger interests like pharma is to wait until they are asked to the table (or they politely ask to sit down at the table). An example would be PatientsLikeMe that originated to address patient needs. If I understand correctly, PatientsLikeMe established itself before partnering with pharma. PatientsLikeMe, I assume, became a trusted ‘brand’ among patients and they trusted the judgment of its founders to make a decision that was in everyone’s best interest.
Pharma has incredible opportunity to connect with patient communities, but at least in the U.S., it needs to be on patient terms…or at least patient-approved terms. In the U.S., we are lucky enough to have folks like ePatient Dave, Trisha Torrey, and Jen McCabe to help us figure out what really counts as being patient-centered. Still, here, and even more so, in the rest of the world, we have yet to assemble an organized group of patients to serve as an advisory group (thanks for pointing to information about patient advisors, Susannah) of sorts to oversee the implementation of the patient-centered part of health care.
Meanwhile, the Society of Participatory Medicine, via e-patients.net is looking for stories that bring the idea of participatory medicine to life. Alex, I would love to hear the CEOs story about why RememberItNow! was founded. Would she be willing to share her story via a blog post on e-patients.net? Maybe we could also get Chris Parks (change:healthcare) and others to share their stories as well.
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
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 Idea storm and Starbucks audience management “My Starbuck Idea” are good examples of authentic ans transparent two way dialogues between companies and their customers.
Patientslikeme and the Belgian pharmaceutical company UCB recently closed a strategic partnership and will launch a platform in early 2010, to collect, analyze and reflect information received from people with epilepsy, regardless of their diagnosis, prognosis or treatment regimen. That information specifically INCLUDES adverse events.
Most probably other pharmaceutical companies are working on a company wide buy in to pursuit the same strategy, which probably will be the biggest hurdle in a shareholder driven world.
Susannah already defined Alex Carmichael’s CureTogether qualifies as a patient voice. Their recent publications on their low-cost open source health research showed that empowered patients can bring real value and improve health quality for the whole healthcare community.
Participatory medicine should and will be embraced by all stakeholders in healthcare that can add value to the systems, those who don’t will eventually disappear by time.
For me it will be intersting to see how European patients will engage, as I haven’t seen no Dave here yet…
PS: Cindy, nice to read your third post in the healthcare blog!
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 patient voices, we first thought about for which sessions this would make the most sense. For example, most of the patient advisors were featured during the “Patient Voices” panel and the sessions on “Practice Level Changes and Tactics,” since they were better able to comment on these topics (e.g., care transitions, sharing medical records with patients, self management support) than on the themes for the other sets of panels — “Organizational Approaches to Quality” and “Bringing Better Care to a Population of Patients.” (Part of the reason is that few patient advisors are currently involved in improving care at the organizational and population health level.)
Then we contacted 1) patient advisors directly who had been recommended by the conference planning committee or other colleagues and 2) already invited speakers (typically health care providers) for references, either to their own patients or patient advisors with whom they had worked. In one case, a patient advisor recommended one of her friends (Nancy Ortiz), who had been trained to be a peer educator for individuals with diabetes, to be on the Patient Voices panel.
I called and spoke with each potential patient advisor and sent reminders and details about the conference by e-mail. For the Patient Voices panel, we also scheduled a brief teleconference with all the panelists to help give them an idea of what to expect.
Finally, CHCF provided a small honorarium to each of the patient advisors. Several have non-health care professions and had to take personal time to speak at the conference.
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 not simply the recipient (and ultimately payer) of a healthcare system.
We are already seeing drug marketing firms hosting conferences with e-patient in their name who then tweet how the conference is for sales and marketing professionals (not engaged consumers) to learn how to target market thought leaders in the online healthcare community. This is the same technique they used to target Physicians by getting them to speak at their conferences.