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.) Continue reading

Public Q&A: How do you know when you are heading in the right – or wrong – direction?

Here’s a question I received recently: What kinds of indicators tell you if you are going in the right — or wrong — direction in your work?

I decided to answer it here, as a public Q&A, because it merits crowd-sourcing. Continue reading

Public Q&A: Alternatives to Facebook and YouTube?

Kathleen Bogart, PhD, studies how people communicate across disability. I met her through the work I’ve done with the Moebius Syndrome Foundation (and I wrote about her research in 2012: Facial Paralysis, Not Personality Paralysis).

She emailed me with a very intriguing question, so I’m sharing it here for discussion:

Moebius Syndrome is a highly visible, but “unrecognizable” condition. That is, strangers immediately notice that our faces and speech are different, but they don’t know the reason for the difference. They don’t understand the cause, nature, or accommodations needed for it. This makes Moebius more challenging socially than disabilities that are visible but better recognized (i.e. using a wheelchair). Continue reading

Public Q&A: How to support an introvert in an increasingly connected world?

All signs point to a social revolution in health. As I’ve put it, the internet gives us access not only to information, but also to each other. Crucial advice can come from a just-in-time someone-like-you as well as from a clinician.

So what happens to people who are shy or introverted? If sharing and learning from others is a key to health, how might we support those who do not easily participate in social settings, on or offline?

A friend wrote to me this week and gave me permission to share his question here:

While putting a ton of energy into helping guide my dad’s care — he’s not doing terribly, but aging incredibly quickly — I’ve learned I’m unable to be there for my mom as much as I’d like. I’m probably the one person in the world she can most talk to, but I don’t have the strength to also help her with the process of letting go of the idea that we can’t fix him.

She is yet another caregiver who doesn’t have the support she needs.

She’s also very private. She has very few friends she’s really open with and would never consider being in an online community.

What to do? Continue reading

Public Q&A: career advice

I made a big career change recently and received quite a few emails asking how & why I did it. I also get a regular flow of inquiries from people new to the health/tech field who ask how I navigated my path up to this point.

First of all, pretty much everyone tells a good story in retrospect, including me. So take other people’s career advice for what it is: highly subjective interpretations of personal history.

But, in case it’s useful, here’s the advice I share with people who ask: Continue reading

Public Q&A: Is there data to help a public health campaign reach 12-17 year-olds?

Here’s a data request I can’t fulfill, so I’m sharing it in the hopes that our community may provide some help:

We are going to do a general market campaign targeting at-risk youth and youth who have already experimented but don’t consider themselves [tobacco] users or smokers.  We are also doing campaigns targeting multicultural youth, LGBT, rural kids—in particular boys at risk for smokeless tobacco use, etc. We are looking at 12-17 year olds, with some campaigns focusing on 12-15 year olds—particularly low SES or kids with higher levels of stress, etc. Continue reading

Public Q&A: How should a clinician measure patients’ use of online health resources?

Here’s a question I received recently from a clinician I met at a conference. He had expressed interest in the Pew Research Center’s health and technology surveys and was now following up:

We are in the process of revising our patient forms and this may be a good time to add 1-2 questions that might best assess e-health utilization for the purposes of future data retrieval. Can you share examples of the questions I can use?

My reply is below, shared in the spirit of public Q&A so other people can contribute and we can learn together. Continue reading

Public Q&A: How should a youth-focused sexual health clinic incorporate social media and SMS into their work?

Continuing my series of public Q&A sessions, I’ll share the following:

We are working on an innovation concept paper to a local foundation and would like to explore how to better use social media and SMS at youth-focused sexual health clinic. We need to be able clearly articulate the benefits of social media and SMS for health care access for youth and young adults. I hope you can provide some resources that may be able to help. Continue reading

Public Q&A: How do (older, lower-income) patients learn?

Rebecka Sexton of the Center For Innovation at the Carilion Clinic in Roanoke, VA, emailed a great question and I’d like to share it more widely:

We are working on a project here at Carilion on chronic diseases related to Population Health Management related to COPD.

I am specifically working on the education component from a service design perspective and am trying to better understand how COPD patients learn,  where their pain points are related to education, what they need education about, etc. The learnings will result in solutions and recommendations to Carilion Clinic. Of course, the social media and technology component enters in because COPD patients are often older and in western Virigina, on Medicaid and many can’t read although they might have phones. I am also considering that education occurs through conversations online too. I am wondering if you can suggest anything for me to look at related to this topic. Continue reading