A Consumer Perspective on the HIMSS 2012 Conference
Last week, 37,000 people gathered in Las Vegas for the HIMSS 2012 Conference—the health information technology industry’s largest annual meeting. Energy was high as product vendors and health care providers anxiously awaited the release of proposed rules for Stage 2 of Meaningful Use, the federal incentive program that is jumpstarting widespread adoption of electronic health records (EHRs) by doctors, hospitals, and other health care providers.
Amid the swirl of discussion of the nuts and bolts of technology implementation and the implications of payment reform, another theme emerged: the importance and potential of consumer and patient engagement in health care through technology.
As one chief information officer of a health care system and 20-year veteran of the conference confided to me, “Years ago at HIMSS, I’d try to talk to my colleagues about patient engagement, and they looked at me as if I had three heads—but this year things are different.”
In his keynote address, the National Coordinator for Health IT, Farzad Mostashari (@Farzad_ONC on Twitter), urged attendees at the HIMSS 2012 Conference to keep the patient in mind in everything they do. But his vision goes beyond the commonly held one of improving 
care on behalf of the patient to improving care in true partnership with the patient. He shared the story of a doctor who serves a community of Chinese immigrants in San Francisco. This doctor underwent a major mind shift when he realized that the medical records he kept were not, in fact, his alone—they belonged to his patients. And just as technology enables providers to do their jobs better, it empowers patients and consumers to be more effective partners in improving their own health and health care.
Others echoed this theme. U.S. Surgeon General Regina Benjamin (@SGRegina on Twitter) described her Healthy Apps Challenge that supports wellness and prevention through consumer use of mobile phones. Health economist and blogger Jane Sarasohn Kahn (@healthythinker on Twitter) outlined the growing trend of “DIY Health,” through which individuals are taking on more health-related activities outside of the traditional health care system. Meanwhile, an enthusiastic group of more than 30 members of ONC’s Consumer Pledge Program met to discuss areas of greatest opportunity for consumer engagement in health through technology, ranging from incorporating elements of online gaming to supporting health behavior change to developing grade school curricula to teach kids—and their families—how to be good health care consumers.
Throughout the HIMSS 2012 Conference, colorful jackets painted by artist advocate Regina Holliday (@ReginaHolliday on Twitter) displayed participants’ personal stories on their backs as part of a unique walking mural project—reminding us that health and health care are personal. Finally, as part of a special “Learning from the Future” track, HealthCamp founder Mark Scrimshire (@ekivemark on Twitter) underscored the link between social media, empowerment of individuals, and the transformation of health care. I think he’s onto something. The kickoff keynote speech at HIMSS was by Twitter co-founder Biz Stone (@biz on Twitter), and in fact, this became the most highly tweeted health care conference in history, reaching nearly 300,000 people through Twitter. Social media and other health IT tools eliminate barriers, help people to make sense of complex information, and empower them to act. As one of Biz’s slides proclaimed: “It’s not a triumph of technology. It’s a triumph of humanity.”
As heartening as it is to hear that the HIMSS convention is more patient-engagement friendly, of the 37,000 participants – how many were truly there to represent patients? As a patient representative I have witnessed far more suppression than welcome. The issue of making implanted medical devices safe is not one that anyone embraces to get sympathy. Federal public policy system failure caused my brother (FDA MedWatch #5009052) to select a medical provider that implanted a failed device and now the surgeon/designer has abandoned him. We learned that it is legal to place a vulnerable patient in medical and legal purgatory. This is all possible because the medical device industry has used its’ influence to legislate its’ own entitlement and it has removed any true government regulation. We have safer and more effective toasters and washing machines(thanks to Consumer Reports) in the U.S. than implanted medical devices. With the #1 expenditure of Medicare being joint replacements, there is virtually no barrier to continued exploitation of our healthcare funding for senior Americans. “Innovations” for individuals are aggressively marketed and mass produced in a one-size-fits-all juggernaut that will not be evident until the damage is monumental with thousands disfigured and requiring “revision” surgery. All those 37,000 paid industry insiders must recognize that they must advocate for patients every day. Ask implanted medical devices sales associates: do you have a joint replacement, an ICD or surgical mesh? If they do not, their sales pitch should provoke much skepticism.
Twitter impressions are not unique people.. What social media metrics and tools are you using? Less than 5% of the population has ever been on twitter and it is an echo chamber with little real reach.
One prolific person on twitter (100 tweets) with 1,000 followers alone would account for 100,000 impressions but not 100,000 people. Add in another tweeter with 10 tweets and 5000 followers and you have another 50,000 impressions but most of those are the same people.
The “loudest” people on twitter are hardly the leaders in health IT Or consumer engagement. In many cases they are merely repeating what anyone in the room or watching the live cast already could hear and add very little insight or engagement to the conversation.
If you had AARP covering the event on facebook then perhaps I would be a little more impressed but honestly twitter?
Lygeia,
Thanks for this summary of HIMSS from your perspective since I did not attend (and have never attended) and have trouble imagining 37,000 people at a single event not involving football.
I’m intrigued by the comment about how “this year is different” and I would love to hear more about why you or other people think it was different? Was it because different people showed up, with new attitudes and interests? If that’s the case, why did they show up this year as opposed to other years? Or was it because the same people, HIMSS veterans, have shifted their thinking? If so, why did their attitudes change?
Susannah
HIMSS certainly has grown into one of the most significant medical conferences in the US. The number of participants are at least two times of what it was a couple of years ago, or perhaps even more. Its a good platform for providers, medical community representatives and even patients to be heard and enable the health care evolution locally and abroad. It was a very pleasant experience for me, attending for the first time, i enjoyed visiting booths and discussing developments in the medical community. Alot of EMR vendors also are using it as a platform to gain feedback and promote their products, i was especially impressed with Kamal Hashmat and his team at Curemd and their plans for the apple osx application.
Thanks for your comment, E Dashman —
Based on my personal experience, there is in fact a very active and growing community of patient and consumer health advocates on Twitter in particular. However, to clarify, I see Twitter as an example of a social media service that is having a large and growing impact on society in many sectors. It’s not the only one, and it doesn’t reach everyone in the main stream yet. Nevertheless, the larger point is that conferences such as HIMSS and the ideas shared at them, which used to be open only to a limited group of participants, are now more transparent—nearly anyone who cares to can participate on some level. I think that’s a positive direction both for healthcare and for society in general.
Joleen –
Your comments certainly underscore the need for greater patient and general public engagement not only conferences, but also in the policy-making process. As I noted in my post, the Office of the National Coordinator is giving bonus payments to doctors and hospitals that use health information technology (specifically electronic health records) to improve the quality of health care, reduce medical errors, and improve efficiency via “Meaningful Use”. The bonus payments are intended to encourage, among other things, patient and family engagement.
If you are interested in weighing in on the specifics of the Meaningful Use program as it continues to develop, please submit a comment here: http://www.healthit.gov/providers-professionals/meaningful-use-stage-2
Thanks!
Hi Susannah –
The HIMSS experience did involve, from my perspective, a dizzying number of participants. It was my first time attending the conference, so I can describe themes I saw generally, but not trace them longitudinally at HIMSS specifically.
However, having worked in the area of consumer engagement and health information technology for a number of years, I am seeing a greater integration of the patient perspective in a lot of conferences and other venues where they were largely absent before.
Why? Perhaps it’s because information technology—the Internet, social media, mobile phones—have accustomed members of the general public to taking a more active role in most aspects of our lives, so doing so in relation to health is a natural extension. Perhaps health reform and the debates leading to it have raised public awareness of the challenges we face in health and health care, and the extent to which change is needed. Perhaps individual health advocates have been more successful than ever at raising their voices—and showing how information technology can enable people to take a more active role in determining the paths their health and health care follow.
Probably it’s a combination of these and other factors. (I was actually counting on you, as a public polling expert and “Internet Geologist,” to help us understand these trends better!)
Whatever the root causes of “difference,” I was struck by a comment by a patient advocate that was shared recently on a listserv dedicated to “participatory medicine”: she “felt like Rosa Parks in the beginning and more like Martin Luther King more recently… We can make more of a change in the world if we all chip in a bit.”
In response to Susannah Fox and Lygeia’s comments, I can bring my own very limited experience with HIMSS. I am mostly a patient, but also an IT professional. I want to use my IT experience to help a hospital.
Last year the government buzz was bringing other IT people into healthcare. I was there: I was IT, cared about healthcare, went through a graduate program for HIT. Maybe it was my first year as a HIMSS member, and I did not know anyone… but my feeling was that nobody cared about IT professionals (with no healthcare experience) or patients.
One year later, the buzz was about patients. I was there again, as a patient this time. The voice of the patients was small, but it definitely was there. Little things came together: we got a bit more organized (participatorymedicine.org), a few organizations helped: RelayHealth sponsored a miniconference (http://www.himssconference.org/future/), and the National eHealthCollaborative (http://www.nationalehealth.org/) sponsored a workshop.
But I am now involved in HIMSS and have a lot more connections, so maybe I am a bit biased. Or maybe we really are opening up to patients!
I am so excited to read this report and even more exicited to see the ever burgeoning mHealth/eHealth endeavors. New conferences like SXSW Interactive (not new but newer focus on health care), Medicine X out of Stanford, Matchpoint in Boston, and so many others are really taking on the challenges of HIT. I think patient advocates are jumping on board and having their voices heard. Many of the developers specifically rely on patients to understand whether their apps/software will be useful and “meaningful” to patients – which will make or break their ideas. They want feedback – not just device manufacturers and EHR developmers, but so many other HIT innovators. These developments will not only engage patients but truly empower them in their own health care and hopefully further engage their providers. We have social media and emails and other limited apps, I can’t wait to see a true revolution coming with new ideas that will redefine communication, efficiency, safety, education, and of course engagement in health care which will not only reduce costs (which is all most seem to focus on these days) but bring us back to focusing on relationships between providers and patients to improve health.