After my funereal disparagement yesterday of the opening of the HIMSS health care conference in New Orleans, I decided to pick up the beat today and talk about some of the people and ideas I encountered with promise for the future.
Nobody Knows The Way I Feel This Morning: patient engagement and all that jazz
Yesterday I spoke of the gap between the reform-minded leaders of health care and the institutions that mostly take care of us. The latest battleground between these peaks of care is the movement variously called patient engagement, patient empowerment, and participatory medicine.
There’s nothing new about this concept. Desperate patients have been self-educating, negotiating with health care systems, and creating advocacy groups forever. On the self-help front, Prevention Magazine began (according to Wikipedia) in 1950. The Society for Participatory Medicine was founded in the mid 2000′s, around the time e-Patient Dave made the concept into a meme through his brave online sharing of his care.
HIMSS has thrown its support behind the Society for Participatory Medicine, which had a lunchtime meeting at the conference yesterday to discuss increasing membership and grass-roots promotional activities. (Folks, consider yourselves promoted.) HIMSS also invited teh popular author Eric Topol to deliver yesterday’s keynote. And the first statement offered by Topol was praise for Regina Holliday, a consumately self-educated patient advocate and creator of the famous artwork and painted jackets in the Walking Gallery.
Perhaps the most encouraging observation I made yesterday was that Holliday (who I’m told had to leave the conference early) generated more buzz than any other person, even Bill Clinton, who will be delivering a keynote today.
Topol’s talk was strong on messages but miserly in the way of guidance. Yes, the range of cheap devices that let us self-diagnose are impressive. Forums for sharing information are also powerful. The missing link, in my opinion, is a respected authority that can persuade the patients who most need these devices and networks–the ones with the most health problems, the most financial and social hurdles to care, the least motivation–to join up.
Topol knows well the problems we face. He excoriated doctors for refusing to email patients or offer easy access to medical records, and he threw in some broadsides against EHR vendors as well. My question is what forces will lead to change, which is the main question I asked in my articles Five Tough Lessons I Had to Learn About Health Care and Five elements of reform that health providers would rather not hear about.
The achievement gap left open by Topol is partly filled by the book Engage!, edited by Jan Oldenburg and recently released by HIMSS Press. Directed at clinicians, it lays out reasons for exchanging information more freely with patients, the use of modern media ranging from text messaging to video, and the role of regulations such as HIPAA. Typically for an anthology, the authors repeat each other to some extent, but the reader who persists can find a broad range of ideas and models to follow.
The book does not recommend particular tools or vendors, a smart choice because the field is likely to explode with innovation soon and be subject to rapid change. But in some ways the book is even broader than the promise in its title, because it contains critiques of the current delivery of medicine and visions for change.
Blue Horizon: getting under the tent with the Intelligent Hospital Pavilion
Each year, HIMSS offers a knock-your-socks off tour of an idealized hospital setting, fully wired with every monitoring, recording, and alerting tool made possible by modern technology. If this makes you think of a Panopticon where you can’t even enter a room without showing up on a screen as a miscreant for failing to wash your hands, you got it right. This may be a stressful environment to work in, because not only do your missteps generate immediate error messages, but they are counted and squirreled away for later analysis. On the other hand, the knowledge that a machine is checking your dosages and keeping track of potentially wandering patients can reduce staff stress.
I felt much better about the Intelligent Hospital Pavilion this year. For one thing, robots are cute. But more significantly, last year, I reacted negatively to the screens of numbers and graphs being thrust at the viewer. This year, my sense of information overload lessened, perhaps because I was more accustomed to the concept and perhaps because the interfaces themselves have improved. I still wonder whether the designers of the pavilion have considered the perenial problem of alert fatigue. I suspect that, if doctors and nurses have some say in the implementation of these technologies, the real-life deployments will be less technologically intense than the demo in the pavilion.
My favorite room in the pavilion was the pharmacy, because here the technology was most seamlessly incorporated into a physical environment that facilitates a human being’s workflow. Pre-packaging medications in small doses, putting controlled substances in locked cabinets, and adding RFIDs all help a physician and nurse do the right thing automatically.
Another concern I have with the intelligent hospital is how much effort an institution will have to put in–and how many bugs they’ll have to iron out during production use–just to integrate the many different vendors that provide the equipment. (At least half a dozen vendors were listed for each room.) This harks back to my criticisms of the health IT field in yesterday’s article. Along those lines, it was encouraging to hear in one session that device manufacturers have made great progress during the past year adhering to industry standards for data exchange.