Hello, medical librarians and all those interested in Medical Search. I am still in San Francisco at the conference, Health 2.0: User-Generated Healthcare 2008. At the moment I am in my hotel room and barely able to keep from flopping into bed. I really do feel driven to write an account of this conference for medical librarians, though, because there don’t seem to be any here but me and there are many developments that we all need to follow in Health 2.0 in terms of search and general online consumer health issues.

To be honest, I feel quite the hypocrite because I pontificate a lot about the need for medical librarians and librarians in general to navigate the waters of Health 2.0 and I find myself a total flop at schmoozing and world class networking. I feel quite shy, short, hard of hearing and utterly unprepossessing. But I am doing this for you all (aren’t I noble and self-sacrificing—ho ho) however awkward I feel among high-powered deal makers and how peripheral I am to these proceedings. I roam around and ask for a copy of the card that a power player is giving to someone else. Okay, it is now after midnight. Slept a bit. I will now go through the highlights of the day as far as medical libraries are concerned.

General impressions. This is my first time at this conference, but apparently it is far better attended than last year and there are more non-tech, non-start up, more mainstream companies in attendance (according to the member from Pfizer on the panel, The Business Case for Health 2.0).

One thing I have found with conferences with the word “Internet” or “2.0” in them is that the organizers try to claim credit for recognizing or capitalizing on obvious trends or else the attendees tend to comport themselves with a swaggering air of, “We are so cutting edge—pity the poor slobs who aren’t or haven’t been as prescient or as cutting edge as we are.” There is quite a bit of that here. I can just hear some techie skeptics scoffing, “Oh, like health care companies haven’t been aware of the patient empowerment movement…” And it isn’t as though librarians are blind to the rise of Web 2.0 and maneuvering to harness it to the benefit of patrons.

Still, it is wise for those of us interested in the interplay of all things Web 2.0 and health and search to be at least being familiar with the movement Health 2.0 and the names of the organizers of this conference, Indu Subaiya, MD and Matthew Holt. The former is a female, sleek and articulate. Holt is an almost comically energetic character, whose boundless verve renders his evangelizing almost incomprehensible given the speed at which his words of enthusiasm tumble forth. Holt and Subaiya also have a weakness for pounding rock music in their presentations as if percussion equates with substance. Still, this conference does bring together groups that do need to talk—those interested in medical search, patient and clinician social networking/computing and those of a more strictly informatics bent.

The tech trends guru Clay Shirky have the keynote, Here Comes Health. He started out with the telling account of an oncologist friend being approached by an online patient community asking if the doctor would like to be included in the group’s database of providers. The doctor assumed that that would be fine and in her interest and was told that in that case the group would schedule a site visit to her practice. This nicely illustrated the increasing heft of these groups as they seek to level the playing field between clinician and patient. The gist of Shirky’s talk was his mantra, “Here comes everybody.”

Next there was a clip of the documentary, Health 2.0 Across America: The Great American Health 2.0 Tour. This featured quite a bit of footage of the former family physician David Kibbe tooling about various parts of the country on his motorcycle and his interviews of various representative figures (e.g., the Heywood brothers of Patients Like Me and Jay Parkinson) of the patient empowerment/new health care paradigm movements.

Here is a link to the agenda of the conference: http://www.health2con.com/sf08.html

The session on consumer aggregators was notable mainly because of the tech troubles Peter Neupert, Corporate VP, Health Solutions Group, Microsoft had in getting his site up and running for a demo, compared to the ease with which the Google and Aetna speakers got through their bits and the prescience the Yahoo rep had shown by arriving simply with screen shots. There was a palpable, “Serves the bastards right,” in the case of the Microsoft man in some sections of the hall. The session was mostly marketing about the supposed boon of the Google or Microsoft personal health records with very little input from anyone in the audience with qualms about the security of these systems.

The session Search in the Long Tail & Intelligence in Communities featured speakers from sites I have blogged about here and that medical librarians should know about given that material on these sites is increasingly appearing in Google search results on health topics: Healthline, Healia, RightHealth and Organized Wisdom.

There is a lot of rah-rah group think at conferences like this and when Gilles Frydman, founder of ACOR, the patient community listserv engine, asked the panelists to put at the top of their own search results the top online patient communities for the illness being researched I thought, “Before MedlinePlus? Before PubMed?” One of the few audience members who questioned the wisdom of valorizing online patient communities at the expense of more traditional and authoritative medical sources was Managing Editor, Medical Coverage ABC News Roger Sergel who, given his cogent, spirited defense of the rigors and virtues of the traditional clinical trial, should have been up on the stage as a panelist or given lengthy rebuttal time.

Earlier in the day I had expressed some qualms about the long-term financial viability of the Patients Like Me business model (i.e. attracting a substantial body of patients with vibrant social networking infrastructures and disease management services and then marketing the volunteered data to pharmaceutical and other businesses). I said that some users of Patients Like Me simply don’t realize that it is a business even though the PLM is very up front about that with users. Ben Heywood took the trouble to come over and engage me in a fascinating and amicable discussion. I was quite surprised that he sees PLM users as primarily interested in utilizing its disease management features, whereas my impression as a one-time heavy visitor of its ALS community is that it is the social interactions among members that is its key strength and attraction to users. Gilles Frydman joined us at one point and I was impressed by the courtesy of these gentlemen in taking the time to engage me and to engage in some fairly heated discussion of the merits of the influence of the online patient community and its impact of the world of clinical research. These are opportunities for librarians to engage in dialogue with movers and shakers in the health care landscape that just don’t occur at librarian-specific conferences and I urge all librarians (and not just medical ones) to follow Health 2.0 and to get involved as speakers and as figures of note in the movement. I am not an impressive person, but many librarians are and could have asked pointed, substantive question in many of the sessions. Perhaps the president-elect of the Medical Library Association, Connie Schardt, could attend the next Health 2.0 conference. Medical librarians really need a presence here in terms of competitive intelligence and advocacy and as voices on reason in cases of irrational exuberance for all things 2.0 in heath care and information science.

Just as it was very interesting for a person of medical library background to chat with Gilles Frydman and Ben Heywood, I had a very pleasant and informative meeting with Venky Harinarayan, Co-Founder, Kosmix/RightHealth. He was quite courteous and spoke his respect for the premier medical library blogger, David Rothman of davidrothman.net (now there is another person I wish had been in attendance, as he would have had incisive, astute comments on many of the goings on at this conference). Harinarayan was quite open to comments and spoke about his interest in furthering advances in health/medical search and the efforts of RightHealth to provide consumers with seamless access to the best possible information without an excessive preoccupation with branding (which to my mind tends to mar the services of Organized Wisdom and Revolution Health). I was quite impressed by his keen intelligence and obvious commitment to health promotion and the alleviation of the plight of people struggling with illness, loneliness and informational deficits. Coming to this conference gave me the opportunity to meet in person with Harinarayan and I kept thinking that the many librarians I recently met at the Midcontinental Chapter of the Medical Library Association or those in my Pacific Northwest chapter of the MLA who could have offered far more articulate input to Harinarayan than I could given their expertise in consumer health and search issues. He was very courteous and I am hopeful that other librarians will get involved in this movement and engage in such rewarding dialogues with people like Harinarayan who are shaping the consumer health landscape in ways that can help librarians help patrons or assist those whom librarians are not reaching.

I attended an excellent panel discussion on provider search, directories & ratings. I was particularly impressed by the tool showcased by Spencer Punter, CEO, Emphasis Search. This is really something medical librarians and all those who need to determine who the leading medical specialists are in various fields should look at:
http://www.emphasissearch.com/index.shtml in particular: http://www.apexmd.com

This tool only includes physicians from UCSF Medical Center as yet. But it looks great so far and has the potential to become a useful part of the medical world’s armatarium of information resources. I hope David Rothman will write this up.

To give you an idea of the many exciting developments announced here, one of the big players announced they will soon be providing profiles of every physician in the US, but now I can’t remember who made that announcement. Ooops!
I stopped by the booth of My Daily Apple and had a very nice chat with Kevin P. Cronin CEO of Praxeon: and chatted with him about My Daily Apple, which is employed to good effect on RightHealth. Cronin said Praxeon is partnering with icyou for video content: which medical librarians should look at if they have patrons who want to enable users to view video content the providers have created but who are hampered by the firewall restrictions that so often hinder information exchange in health care settings. It also is yet another place for medical librarians and consumers to find medical video content.

So this first day of the conference was very informative. I have a whole nother day tomorrow and I still have to proofread this post.

Take Away points: Medical Librarians (and members of the American Library Association, given the huge role public libraries play in consumer health—you would think at this conference given the talk about information deficits that there were no such things as libraries!) need to take their place at the Health 2.0 table and I hope to see delegations of them at the next conference or at least representation by the leaders of our professions. I am just the scout. We need the bigwigs now.