Participatory Medicine at NIH, part 2

The National Institutes of Health recently gathered a group of consumers and people who study them. We met off-site at a hotel in Bethesda, which I thought was an apt metaphor for the day’s question: How can NIH better communicate with the public? First, I said, make it easier to access your research. Make your website less like the fortress that is the NIH campus and more like the hotel, where one friendly employee opened the door for me and another made sure I got to the right room.

The “audience” panel represented various viewpoints: a high school student, an internet-savvy twenty-something, a patient advocate, and a senior who happens to be a local elected official. When asked about their news sources, they talked about TV, radio, print newspapers and news sites. When asked about their sources for health information, it was Google, Google, Google, Google right down the line (plus seeing their doctors, they added).

Quotes from the audience panel:
– Twenty-something: “The internet is a good back-up plan, to use in partnership with a doctor.”
– High school student: “If you give us something on paper, we’ll lose it. If you give it to us on our ipods, we’ll keep it because we value our ipods.”
– Senior: “Doctors talk to you as if you know what they know, and that’s not always true.” (He uses the internet to fill in the blanks.)

The “expert” panel discussion was asked to talk about the changing media landscape. Richard Edelman, of Edelman public relations, led off with this insight: “Every company is a media company. If not, you leave room for your competition…or for ignorance.” (Are there any exceptions to this? I can’t think of any.) Basically, participate or fail.

Pere Estupinya, a science writer and blogger for El Pais, said that his articles are better than his posts, but his posts are more influential. (That resonated with me, especially the insights gained in the comments.) He also cited the recent Pew Hispanic Center study, “Hispanics and Health Care in the United States.”

I talked about how participatory medicine could be part of the NIH communications plan. By making their scientific information easier to grab and share, NIH can deputize e-patients as their “agents” to overcome misconceptions. In our research, e-patients often cite the value of science and point to medical journal articles that have helped them.

Barry Schwartz, author of The Paradox of Choice (shortcut: watch his TED lecture), said that the NIH’s problem was that they were fighting “truthiness” with truth, which does not always win despite best efforts.

Rick Weiss, a senior fellow at the Center for American Progress, said that NIH has a greater responsibility to get the “pithy truth” out and correct inaccuracies in an accelerating news cycle, warning that “four hours later, it’s not news anymore.”

I agreed with Weiss that the news hole is shrinking and the pace is accelerating, but when the window closes on a “news” item, it opens a door for NIH data to live on in Google as health information. When someone is diagnosed with the condition covered in an NIH news release, they don’t care that it’s three months old — it is fresh, vital information to them. NIH research is a classic example of the long tail and to take advantage of that, they could make PubMed a more intuitive tool, release all the information locked up in PDFs that are hard to share, go mobile, and choose openness at every opportunity.

Here’s a link to Participatory Medicine at NIH, Part 1 for more of a Q&A on the same subject.


Posted in: trends & principles





7 Responses to “Participatory Medicine at NIH, part 2”

  1. Being a media guy in a high tech company, I’d strenuously disagree with the way Edelmann phrased it. If we turned ourselves into a media company (like, we’d have our heads stuck up our value proposition.

    I’d easily agree, though, that any company without strong media awareness and correspondingly strong media activity is leaving themselves wide open to the competition and ignorance.

  2. btw, reading more deeply, I think you’re exactly right about both the “4 hours later it ain’t news” and “it lives on in Google.”

    There’s a social media challenge, though, in that Google’s current algorithms place a higher value on newer material, or more recent things like blog links that point to it. This is something to think about. I study it at work but I don’t know how it plays out in non-tech-trend topics like medical information.

    Couldn’t agree more, btw, about the analogy to a welcoming hotel doorman. I’ll use that in my company’s web makeover project, currently underway.

  3. Susannah Fox says:

    You can read more about Edelman on his blog, which I linked to, but I’ll still say that if your company has any public face they must be aware of how they are portrayed and try to improve their “story.”

    Your point about Google is also a good question – and maybe another reason to improve Pubmed.

  4. One of the reasons Google often does a dismal job when looking for terms referring to a rare disease is this rush to get the latest.

    Not everything should be raised based solely on currency. When it comes to medical information the accuracy and the relevancy MUST be included in any equation. Human beings have a much higher RelevancyQ than the search engines. This is where the wisdom of crowds excels and current algorithms fail.

  5. Susannah Fox says:

    So the default for most people is to use a general search engine like Google, but if someone has a rare condition, you’re saying they might be better served joining an expert patient group. What about the “health vertical” search engines like Healia, Organized Wisdom, etc.

  6. I am saying that for rare diseases, in most (if not in all) cases IT IS better to join an expert patient group. So far, NOTHING can replace these groups when they are well run.

  7. Susannah Fox says:

    I just heard about this “research engine” for accessing the “deep Web”: Infovell. ReadWriteWeb has this review: Sometimes Google Isn’t Enough

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