Public Q&A: Online patient communities

A community colleague recently asked me where he might find the latest numbers on the percentage of U.S. adults who participate in online patient communities.

In the spirit of “public Q&A” I’d like to share my answer and ask people to add tips about other resources in the comments.

Up until July 2014, I led the Pew Research Center’s health and technology portfolio. I believe that data is still relevant, so that’s where I’ll focus.

Public opinion polling about a rapidly evolving field is a challenge, to say the least. We constantly talked at Pew Research about how to capture a behavior early, before it morphed into something else, and without naming a certain platform (see: The Twitter Question and Changes to the way we identify internet users.)

“Online patient communities” can mean something very specific, such as membership on an old-school email listserv or Yahoo group. It could also mean that you are a member of a community like Inspire, PatientsLikeMe, Smart Patients, or any of the many, many other disease-specific websites out there. Or, and here’s where it starts to get squishy, it could mean you follow a hashtag like #bcsm (breast cancer social media) or #foodallergy.

I’m a big believer in casting a wide net and giving people room to define themselves, such as when we asked people if they track health in any way (7 in 10 U.S. adults said yes) and then asked how they did it (half keep track “just in their heads”). “That shouldn’t count as tracking!” say some critics. I say we should meet people where they are, not where we wish them to be. Design something that is as easy as keeping track in your head. Or be ready to convince half your market that your app, gadget, or idea is so magically compelling that they need to change their habits (good luck with that).

I also often hear in my fieldwork that people don’t always remember where they learned something. Was it in an email? A text? Did they talk to that person on the phone or in person? To me, the motivation for and meaning of the exchange are what matters. The technology will change and pass away, but the human need for connection will not. That’s what I think we need to measure when it comes to online patient communities.

So, here are the data points that circle around an answer to my colleague’s question:

18% of internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs. People living with chronic and rare conditions are significantly more likely to do this. For an in-depth look at this phenomenon, see my 2011 report: Peer-to-peer Healthcare.

26% of internet users have read or watched someone else’s experience about health or medical issues in the last 12 months.

When asked to think about the last time they had a serious health issue and to whom they turned for help, either online or offline:

• 70% of U.S. adults got information, care, or support from a doctor or other health care professional.
• 60% of adults got information or support from friends and family.
• 24% of adults got information or support from others who have the same health condition.

This “last time” frame is something that my Pew Research colleague Kristen Purcell taught me. It prompts the respondent to think about one specific incident and helps them to focus their answer — hopefully yielding something as close to the truth as we can get in a broad, national survey.

So, which number is my favorite? The last one: One in four U.S. adults say they reached out to others who share their same condition the last time they needed health information or support.

For more data and sources, see: Pew Internet’s Health Fact Sheet.

Now: What can you add? Is there fresher survey data out there that you can link to? If you were going to field a survey, what would you ask? Please share in the comments!