Crowdsourcing a Survey: Health Topics
The Pew Internet & American Life Project will soon go into the field with our next health survey and we need your help.
One of our core findings (8 in 10 internet users, or about two-thirds of U.S. adults, look online for health information) is based on a series of questions that is tweaked in each survey. We re-word or separate concepts, cut some topics, and add others. Are there topics missing from the list? Which ones deserve to be repeated this year? No promises, but I asked for similar feedback in 2008 and implemented a few of the suggestions (see the “2008 only” topics below).
a. Information about a specific disease or medical problem (asked in 2002, 2004, 2006, 2008: results)
b. Information about a certain medical treatment or procedure (02, 04, 06, 08: results)
c. Information about experimental treatments or medicines (02, 04, 06, 08: results) Read more
The Power of Data and the Power of One
I am struck, once again, by the power of data and the power of one.
Carlos Rizo, Chief Imagineer of the Health Strategy Innovation Cell, posted this very intriguing tweet on May 2:
The power of open data: To find problems in complicated environments, and possibly even to prevent them from emerging.
Clicking through, I saw it was a quote from this eye-popping post: Case Study: How Open data saved Canada $3.2 Billion. The writer, David Eaves, concludes (emphasis added):
When data is made readily available in machine readable formats, more eyes can look at it. This means that someone on the ground, in the community (like, say, Toronto) who knows the sector, is more likely to spot something a public servant in another city might not see because they don’t have the right context or bandwidth.
Where have we heard that before? How about every e-patient story, um, ever? Or, as Regina Holliday recently testified, “I may not be an expert at my husband’s disease, but I am an expert when it comes to my husband.” That’s the power of one person, to care so much about someone that they will read his entire medical record.
If someone is motivated enough to dig, interested enough to analyze, and knowledgeable enough about their chosen topic to see data with fresh eyes, they can start a revolution on a small scale (like preventing medical error for a loved one) or on a large scale (like exposing widespread corruption). Read more
Health 2.0 Europe: A Moveable Feast
Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don’t end simply because the participants have left the building.
Health 2.0 Europe began, for me, in February, when I started thinking about some of the topics that the Patients and Online Communities panel would discuss. My post, “Privacy can kill, openness can heal,” kicked off a discussion about health data rights, the role of health professionals, security/confidentiality/privacy, patient-driven research, and why relatively few patients have joined formal patient communities while naturally-occurring communities on Twitter/MySpace/Facebook have blossomed. Read more
Participation Matters
In politics and in health care, participation matters as much as access.
The passion we saw in the political campaigns last year is matched by the passion we see when someone is trying to save a life, find a better treatment, or just manage the health of a loved one. What are you doing in your work to harness that passion? Read more
Health IT Policy: E-patients want access
What would you say to policymakers who are discussing the implementation of a national health information infrastructure?
Here’s what I’d say: E-patients want access to tools and information. Many will find what they need, many will not. You can help. Read more
Social Media’s Promise for Public Health
Federal agencies can, and should, be the first responders to health questions. Social media can help.
That’s my summary of presentations from last week’s National Conference on Health Communication, Marketing and Media conference, where I had the sense, once again, of a tribal meeting, but this one had the urgency of war council. The enemy is legion: flu virus and Salmonella, yes, but also misinformation and misunderstanding. Read more
Participatory Medicine at PdF09: Can we get a do-over?
The poli-tech tribe gathered in New York last week for the Personal Democracy Forum and, as Craig Newmark put it, welcomed “our new nerd overlords.”
Esther Dyson, Jamie Heywood, Rep. Jerry Nadler (D-NY), and I were asked to take on a breakout panel entitled, “From Participatory Politics to Participatory Medicine: The Coming Revolution in Health Care.” Cool, right?
Esther Dyson, Jamie Heywood, Jerry Nadler, and Susannah Fox
Via email, Esther suggested we skip the usual speeches and just tell the audience the questions we’d like to be asked and have a truly participatory session:
- Jamie was going to talk about PatientsLikeMe, HealthDataRights.org, and the power of patients to take control of their own data.
- Esther was going to ask how openness, transparency, measurement, and sharing of data affect health care.
- I was going to talk about which tech trends might forecast higher (or lower) levels of involvement by all Americans in both participatory medicine and participatory democracy.
Then Rep. Nadler arrived and said he’d been told that this was a panel about health care reform. Well, kind of. Not really. But we had to get started.
It didn’t go well. Read more
Mobile could be a game-changer – but only for those who get in the game.
Original title: Health 2.0 meets Ix: Susannah Fox’s presentation
Here are my prepared remarks for the “Navigating the New Health Care Delivery System” segment at the Health 2.0 meets Ix conference (with the lines I added to respond to other themes brought out during the conference in bold)
“Is Health IT the answer? Only if it helps foster relationships.” What a powerful statement about the role of technology in our lives. Ideo’s interviews uncovered trends which are reflected in the national phone surveys conducted by the Pew Internet Project.
Participatory medicine is taking hold with both citizens and health professionals.
Read more
Mobile, social technology and the impact on health care
Fard Johnmar interviewed me about internet adoption, the use of social technologies among minority groups, and my hope that e-patients’ “passion, knowledge, and ingenuity is brought forward no matter what else is planned for health care reform.”
Read more
Crowdsourcing a Survey: Reassured? Overwhelmed? Eager? Confused?
The Pew Internet Project is finalizing our fall health survey and we are now in the painful cut phase. Here’s a question I’m hoping to save in a shorter form:
At any point in your last search for health information online did you feel any of the following things? At any point, did you feel…?
Read more
white paper
e-Patients:
How They Can Help Us Heal Healthcare
Recent Posts
- Majority of consumers use social networks to influence buying decisions (Gartner)
- Why Mark Boguski joined the Society for Participatory Medicine
- Moving the mountain: Producing evidence and results on methods for better care
- Dear White House: The Personal Data Challenge
- Initial OpenNotes report: project description and baseline attitude survey
Recent Comments
- Susannah Fox on Majority of consumers use social networks to influence buying decisions (Gartner)
- Annie Stith (@Gr8fulAnnie) on Dear White House: The Personal Data Challenge
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