November 20, 2009

Participatory Culture + Health Care

A big part of my job, and one I love, is answering questions, mostly from reporters. Sometimes I have just the data or insight someone needs, often I recommend someone else.

Here is a sample of frequently-asked questions and my current answers. Please add your questions and answers in the comments: What are you curious about when it comes to technology’s impact on health care? What resources do you recommend?

Is a cultural shift affecting health care?

Yes. Thanks to the internet, people increasingly expect to have access to information.  They increasingly expect to be able to comment on and easily share information.  And it turns out that participation matters as much as access.

This is my favorite topic and I could talk for hours (or for 4:21; 4:44; 3:06; or 4:50).

How do people judge the quality of health information online?

The best they can, but probably not the way you think they should. However, we may have bigger fish to fry in health care.

Follow me on this one: Most people’s first stop for health information is a general search site. Google dominates the search market. A British Medical Journal article found that Google is a pretty good diagnostician. Very few people report bad outcomes from their online health research.

UPDATE: I stand corrected on my citation of “Googling for a diagnosis” thanks to the comments on e-patients.net and those attached to the original BMJ article. Thank you!

But wait, who’s in charge of vetting health information online? Shouldn’t we be concerned about this?

Nobody’s “in charge” and to some degree, yes. The base of the internet population is broadening to include people with less education and lower health literacy/numeracy. E-patients with a high school degree or less are more likely than better-educated e-patients to say they were confused by the health information they found online. But note that the two groups are equally likely (and more likely) to say they felt confident to raise new questions or concerns with their doctor, too.

For more on the “who’s in charge” and “what advice can we give consumers” please see:

What are doctor’s attitudes?

I don’t know, but Manhattan Research and ThinkHealth do.

Are patients ready for this?

The Center for Studying Health System Change’s study measuring “patient activation” is one indicator. The central role of family caregivers is not addressed in the study, however. See the comments on this post, for example: 41% of Adults are “Activated Patients”

Another indicator is the relentless popularity of health information online. Lots and lots of people are looking up information on all kinds of health topics. (Hey E-patient Dave, are patients ready for this? :)

What about privacy?

Daniel Solove’s taxonomy of the word “privacy” has forever changed my thinking about the changing nature of personal information. In fact, I try to avoid using the word at all (instead: confidentiality, security, anonymity…)

Deven McGraw, Director of the Health Privacy Project at CDT, is a good source on health privacy regulations and enforcement. Jules Polonetsky, Director of the Future of Privacy Forum, is a more general source.

E-patients.net has a few posts on the topic of health privacy and I am happy to provide contact information for sources on all sides of this question. (Nominations welcome in the comments!)

What about hospitals? Are they using online tools?

I don’t know, but Ed Bennett does.

Does the internet cause cyberchondria?

Caution: “cyberchondria” is a loaded term.  E-patients.net has hosted discussions of how to describe people who use the internet to gather health information. For example: Googlers vs. e-patients vs. cyberchondriacs. Amy Tenderich of DiabetesMine had another good take on this topic:  “Patients” versus “Health Care Consumers”? Both, If You Ask Me. We also unpacked a Microsoft study of “cyberchondria” (be sure to read the comments on all of these posts).

What business opportunities are there in this field? What does the future hold?

I do not endorse companies, people, or policies. I try not to make predictions about the future. But I can say that I am watching the spread of wireless internet use very closely. Wireless access has a significant, independent effect on how someone uses the internet and it’s the trend I am most excited about tracking over the next year or so.

I hear from start-ups and established businesses every day (yes, every day) who would like me to publicly recommend their work. I can’t. However, I’m happy to hear from them and would love to hear from even more — via email or here in the comments.

OK, I’m serious about this: I love answering questions and, even more than that, I love being useful.  So help me out:  What questions do you have?  What answers would you like to provide?  What resources did I miss?