Does anyone else remember those Reese’s Peanut Butter Cup commercials from the 1980s? “Your peanut butter is in my chocolate!” “Your chocolate is in my peanut butter!” I knew I was getting older when I referred to a partnership as a “two great tastes that taste great together” event and my younger colleague had no idea what I was talking about.
Well, here’s my latest example of such a partnership — two great people, one great concept: Patient Centered Health Information Technology.
Ted Eytan, on sabbatical from GroupHealth, and Josh Seidman, of the Center for Information Therapy, are working together to “improve adoption of health information technology tools to better engage patients and families in their own care.”
Privacy is one of the issues I’m hoping to learn more about as the initiative develops. The Pew Internet Project’s next report, due out in early December, will take a look at people’s “attitudes and actions” regarding personal information and privacy online (building on what we learned about people’s “attitudes, actions, and assets” regarding communications technology). I have discussed the findings with a few privacy experts AND with some cancer patients. I’m observing major gulfs between the general population (most of whom default to “ignorance is bliss”), privacy experts (who warn of the implications of personal exposure online), and patients (many of whom are quite willing to share their personal stories online in the hopes of getting advice and giving help to others). I would be very interested to hear what people think about privacy in the era of e-patients and health IT.
Ted Eytan, MD says
Well thanks, Susannah, and thanks in advance for the information that will come from the Pew Internet Project in December, because like past reports, I know it will give great guidance on how to serve people better.
As you know, I come from the provider/delivery system world, where there is great emphasis, even beyond HIPAA, in supporting patient privacy and security. We say it is one of the most important aspects of care we provide – protecting members – and it transcends virtual or physical encounters.
One of my operating principles is that as an outcome patients have to feel comfortable in seeking care that is compassionate and un-biased. If we do things that result in them feeling less comfortable or empowered (from their perspective, not mine), then we risk their ability to achieve their life goals through optimal health, which is what the health system is here to help people do. I think this is a good general clinical check-in to do when we get technical to make sure this is what we are supporting in all of the protections we provide.
Joshua Seidman says
I, too, am really looking forward to Pew’s December report. The privacy issue is clearly a challenging issue to tackle–and more complex than many make it to be, in part because people feel so differently about it.
I think Ted is right about consumers’ comfort levels being critically important not just for their “rights,” but also because of the implications for their health.
Back on the PCHIT blog (http://www.pchit.org/2007/11/13/133/), I commented earlier that barriers to feeling comfortable sharing personal information can ultimately lead to constraints on optimal health for that individual…as well as many others who may benefit from learning of their experiences.
Terry & Joe Graedon says
The privacy issue is huge for hospitals that are looking to provide patient access to electronic health records. They worry about identity theft or fear legal action if an unauthorized person were to access someone’s medical record.
On the other hand, patients want easy access without lots of filters and restrictions. It is a challenge to figure out how to balance these competing concerns.
Terry & Joe Graedon
Judith Feder says
Weighing in from the patient point of view. Clearly, privacy is a huge issue. People may not “feel” it until they experience a privacy breach; hence the ignorance is bliss attitude. I think that any system that invites patients (or anyone else) to share personal information needs to employ the best privacy and security tools that exist. It needs to offer plenty of opt-in (or not) choices, and to make very clear how and where data will be used. I do believe that patient data can be very valuable when it is anonymous — it’s more important to me to be able to identify someone by the characteristics of their condition than by name.
At the same time, I also think that patients may have a need to share information that trumps privacy concerns. The whole experience of being a patient can be pretty intrusive. And then there are the vagaries of HIPAA, which often seem to defy common sense. Finally, there is the very strong need to find information, especially information that’s relevant to your particular situation. That’s a very strong motivator, in my experience.
Susannah Fox says
Thank you, everyone, for these great comments. The survey we are analyzing for our upcoming report did not actually include questions about personal health information, but since I often see things through a few different lenses (health being one of my research interests, along with seniors & Latinos) I can’t help but wonder about all the implications of our growing online footprints.