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Last fall, at the e-Patient Connections conference, I gave a sneak preview of some survey results which are set to be have been released on the Pew Internet site on Monday, Feb. 28. I hoped to spark new ideas for a savvy, plugged-in audience and I ended up surprising even myself with some of what I talked about. Watch:

Around minute 7, I share the results of a survey question that was inspired by some research conducted in 1999 by Tom Ferguson: E-Patients Prefer eGroups to Doctors for 10 of 12 Aspects of Health Care.

Here are notes about what I said if you can’t watch the video:

Tom asked patients who were living with a serious condition to tell him which advisers were the best at diagnosis: Health professionals or their online support group? Which were best at providing emotional support? Which were best at providing day-to-day tips about how to deal with symptoms?

Our national telephone survey results match Tom’s pioneering work: 9 out of 10 patients say health professionals are more helpful than fellow patients, friends & family when it comes to getting an accurate medical diagnosis. Only 5% of American adults say that fellow patients, friends, and family are more helpful for a diagnosis.

The picture shifts when we ask about emotional support in dealing with a health issue: fellow patients, friends, and family are the much more popular choice. And it is an even split when it comes to practical advice for coping with day-to-day health situations: professional sources like doctors and nurses rank pretty much even with fellow patients, friends, and family.

For example, one person wrote in an online survey: “I love to be able to talk to others who know how bad depression can be from their own experiences.”

By contrast, another e-patient does not find the community aspect of online health information to be useful, writing, “I don’t find chat rooms helpful because most people are sharing how horrible they feel and I am beyond that. I have bad days but I feel dragged down when I whine about them or listen to others talk about their problems with doctors, family, etc. I don’t have those problems.” This person uses the symptom- and medication-tracking tools available on the site, finding utility in sharing of a different sort.

I found that comment refreshing. So many patient community leaders have told me: we are about science, not hugs.

Around minute 10 I couldn’t resist a riff on a theme that inspired me at the Mayo Clinic Transform Symposium: Love is the secret ingredient to health.

Speaking of secret ingredients, there were a lot of people up there with me as I spoke, even if you can’t see them: friends and colleagues who have taught me about the power of sharing, like Tom Ferguson, Patti Brennan, e-Patient Dave deBronkart, and Regina Holliday.

Along with them were the thousands of patients who answered my survey questions over the years, both on the phone and even more importantly in writing, sharing their experiences so I could retell their stories about how they use ACOR, BrainTalk, PatientsLikeMe, HealthCentral or other patient communities.

Again, some notes in case you can’t watch the video:

Love is the reason why people want to stay healthy. It’s why they want to stay well. It’s why people feel compelled to share, to give each other emotional support, to track observations of daily living, to track how a medication treats them as an individual so others can learn from it. Because of love. Because we want to help each other.

What happens when we acknowledge that human beings want to share? That they want to help each other? They want to connect with the best medical advice available. And yes, they want hugs.

That’s chronic disease in the internet age. That’s health care out loud.

I can’t wait to share more about the upcoming report, which combines national telephone survey data with insights gathered in an online survey of people living with rare conditions. Talk about superheroes — I have been floored by the stories I’ve been reading, both in our survey and in a new book by rare disease caregivers: Uncommon Challenges; Shared Journeys.

I’ll post the report on in time for Rare Disease Day (Feb. 28) and I’ll also start a discussion thread here about the findings.


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