Health information is obviously an important category of information users are looking for. For this health search feature we decided to offer users one source each from a governmental health agency, a medical institution, and a commercial site. We’ll study how users like these choices and continue to iterate. None of these sites is paying any money to Google to be included in the feature. Google is 100% committed to ranking websites objectively to provide the most relevant information to users. Websites cannot pay for higher search rank.

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Eric Schmidt wants to solve health care’s “platform database problem” and one critic has  countered that “computers cannot practice medicine.” One of Google’s initiatives is to guide consumers to safe, trusted health websites. Is that such a bad thing?

Search result placement can make or break a site or a business model, which is where dot-com blogs come in, but they also have the potential to make or break a consumer’s access to health information, which is where e-patients.net comes in.

First, some background. Search is central to health information gathering: Two-thirds of consumer health inquiries start at a general search engine. The trend line for consumers’ reliance on health search is so steady, in fact, that Pew Internet stopped updating it in 2006. Other researchers seem to take search dominance as an article of faith, too: Harris Interactive, Manhattan Research, Center for Studying Health System Change, National Cancer Institute’s HINTS – none have recent data on health search, at least on their public sites.

What has changed are the search results.

Google Health’s OneBox launched in August.  Instead of just featuring sites kicked out by the “democratic” PageRank algorithm, search results for “high blood pressure,” for example,  highlight information from A.D.A.M., Mayo Clinic, WebMD, or Medline Plus at the top of the results (well, almost the top: 3 paid advertisements or “sponsored” links appear first). Everything else is pushed down and out of the golden spotlight of the top results where consumers are likely to click. To paraphrase George Orwell, Google seems to have decided that all health sites are equal, but some are more equal than others.

Consumers do have other choices. According to Hitwise, Google garners 72.3% of U.S. searches; Yahoo 14.8%; and Bing 8.9%. A search on “high blood pressure” on Yahoo Health returns a combination of sponsored links and multiple articles from a single source: Healthwise. No algorithmically-generated results appear in the center well of Yahoo Health’s page.  Bing Health, which launched on Jan. 12, tops their search results with sponsored links, a box of Mayo Clinic links, and then a full set of algorithmically-generated links. Health search “verticals” are available, such as HONsearch and ResoundingHealth, but these are also stocked fishing ponds featuring chosen sites and content providers, not the open waters of the internet.

So what? Mayo/WebMD/Medline dominate the health information marketplace anyway, as measured by companies like comScore or HitWise. Consumers need trusted sources to help them navigate a new diagnosis. What’s the big deal?

I think it’s useful for consumers (as well as health info purveyors of all stripes) to note the changes and to talk about how powerful search results can be.

Here is one site’s story:

In 2001, NCHealthInfo.org launched as a model for the NIH’s Go Local initiative (there are now 35 such sites). North Carolina residents can find links to nearby health services as well as information related to local health topics (Southern Tick-Associated Illness) and general issues (nutrition).  I recently interviewed the site’s director, Christie Silbajoris, about how they garnered traffic for such a low-budget site.

Their strategy, in sum: Be first, be useful, then get out of users’ way.

The site is a honeypot of links in and out, which boosted their PageRank. The NC Health Info team was not sure what their audience would choose to research so they just kept uploading what they believed to be the best resources, attached robust metadata (keywords related to the page content), and Google blessed them with excellent placement. If you search for “health services glossary” for example, they are still among the top results. They also are a top result for searches on military health insurance and for diabetes info in Spanish, much to the surprise of the librarians who run the site. Now, however, they are losing ground and getting pushed down in the search results.

Is NC Health Info an artifact of history? Would a small site have a chance these days? If not, is that OK? Does the best information reside on the big player’s websites? Or is this another example of the Googlization of Everything?

More broadly, I wonder if curated search results are the answer to the ongoing debate over information quality. Pew Internet research shows that consumers are not likely to check the source and date of health information found online. I have often advised people who are concerned about that finding to “go where the users are” (ie, search sites).  As I said at the top: Search sites are now guiding consumers to safe, trusted health websites.

What do you think? Is this is helpful to consumers or not?

(For more details, please see the NIH press release, a Wikipedia project page, and a Wikimedia Blog post.)

The NIH communications team invited me to observe this continuation of the conversations we had started about participatory medicine in June and September 2008. It was amazing to be there to see these two learning cultures meet for the first time.

This was my first attempt at live-tweeting an event and I am grateful that I was joined by Jess Palmer and Craig Hicks.  Since Twitter is not a good archive, I will reproduce my notes here, from the first to the last, calling out my favorite quotes:

Event sponsored by NIH Office of Communications + Wikimedia Foundation #nihwiki

John Burklow, NIH: wake up call re health comm; Wkipedia is first stop for many; NIH is highest quality info

Marin Allen, NIH: we are all public servants, all want trustworthy medical info, shared goals are kismet

Marin Allen, NIH: Wikimedia setting up hotline for NIH editors

Frank Schulenberg, Wikimedia: Wikipedia does not work in theory, but only in practice.

Schulenberg, Wikimedia: NIH is first federal agency to host Wikipedia Academy

Schulenberg, Wikimedia: we hope to infect you with our passion

Jennifer Riggs, Wikimedia: We are lucky emissaries; mission-driven, most-visited site for info (comscore data)

(Event is being recorded for future trainings; NIH and Wikimedia photogs are capturing the 75+ attendees)

Riggs: “Wiki quality” means multiple POV but no opinions; experts can contribute, but so can others

(Not sure I got that last point right – I will ask + refine since it is potentially massive)

[@jesspalmer noted to me: I think Riggs said Wikipedia strives to have multiple *perspectives* and no POV. (If that's possible, it's hard to do)]

[Jennifer Riggs posted in the comments: "My statement: encyclopedia articles are best, (and Wikipedia’s strength includes) when people with multiple perspectives collaborate to write content with a neutral point of view (NPOV)."]

Tim Vickers, Wikipedia volunteer and scientist: scientific literacy is low, challenge for NIH and us all

Vickers: just published JAMIA study showing Wikipedia results in top ten of 80pct of health searches on 3,600 keywords

Vickers: #H1N1 article: traffic spiked on Apr24 at 1.3MM per day, leveled off to 30K (now only medical rival is vitiligo article bc of Michael Jackson

Vickers: Wikipedia medical articles should be summaries of literature; 60-70pct of diseases have an article

Vickers: our main rival is media (a comparison shows how shallow a MSM article vs the “web of info” in a Wkipedia article)

Vickers: articles vary in size and quality: 14k stubs in molec bio, 3k starts, up the scale to 29 “features”

First question from NIH: is quality correlated w article length?

Vickers: Best predictor of qual is number of times it’s been edited, also number of references

NIH q: what abt including dosages from PDR? First do no harm

Vickers: Wikipedia does not seek to replace health pro; aim to provide right info, within bounds

[@jesspalmer captured his point better: Vickers: An online encyclopedia can never replace the physician-patient relationship – that would be absurd]

NCI q: wary of anonymous editors

Vickers: Net is anon medium; we must scale, so onus is on cited sources, not personal credentials

NIH q: language and translation? Vickers: case by case by volunteers

NIH q: diverse audiences and accessibility? Vickers: broad overview – daunting task – teachers, not scientists do these well

Compare Wiki edits and scientific peer review? V: Remember that MSM is filter for sci journals – Wikipedia is third way, a bridge

NIH q: how deal w deleted comments V: called edit wars – bring in wider community, guided by mainstream sources, fair summaries

William Wedemeyer, Wikipedia editor and scientist: why contrib? Broader impact: science outreach and educ

Wedemeyer: collaboration w other researchers and educators – improve your lectures and other communications

Wedemeyer: WP articles are like Cell mini-reviews; personal authority counts for nothing; no original data

Wedemeyer: WP has “librarian function” that NIH could take advantage of

Wedemeyer: “See also” and “Further reading” sections are librarian functions

Wedemeyer: Wiki to print – anyone can request any assortment of articles and print book will be mailed

Wedemeyer: Selfless amateurs have begun the work. WP invites you, the top scientists, to join them

Wedemeyer: shocked by price of textbooks, many of his students can’t afford: can WP help?

Wedemeyer: led student project comparing WP vs Britannica on protein science (me: sorry, not convincing parallel to textbks)

Wedemeyer: As scientists it is our calling to provide knowledge to the world, I hope you answer that call

[@jesspalmer captured another quote: Wedemeyer: "Our wealth is about uncovering knowledge and sharing knowledge]

NIH q: tell more abt quality rankings. W: lists and images are easy to upload but don’t illuminate fully

NIH science writer q: inspired by your remarks bc what I do is perfect for the lead section and scientists can refine

NIH q: how to tell greatest need? WP: requested articles list – red links in articles

NCI q: editorial boards are our great resource, how can they contrib? WP: if text is in pub domain we can marry to volunteers

John Broughton, author of Wikipedia – The Missing Manual: what is a good article? Factually accurate, verifiable, neutral

Broughton: only info from a “reliable, published source” (me: what is defintion of published? @DocJohnG @gfry ran into this) [See: Wikipedia’s Arcane Rules Censor Health Information]

(Wonder if there are other exceptions for “notability” besides science and medicine?)

Broughton: Most vandals are unoriginal and easily caught

Broughton: NB: IP address is less anonymous than a registered username on WP

Broughton: “notability” defined by coverage – need secondary sources to prove – says not a prob for science, even #rare disease

Broughton: a good citation is like a godclass weapon on Wikipedia – removing your edit is deemed vandalism

Broughton: blogs are not as reliable, verifiable as a MSM source (likens blogs to selfpublished books) #fightingwords

Participation is coin of WP realm (reminds me of @PatientsLikeMe and other online communities that confer power to the active)

Broughton showing the WP Editor’s index to answer q re copyright

NIH q: is our website a reliable source? WP: (incredibly, I think he is saying no – will follow up)

Clarification: NIH website *is* credible source for scientific info, not for “self-promo” (NIH is the greatest!) info

Kevin Clauson emailed me a q which inspired great lunch convo: will NIH give scientists credit for contributions?

Burklow said NIH had no plans to formalize credit, but saw value; Wedemeyer and Vickers said credit for time spent is key barrier

Phew!

I loved receiving emails and direct messages of encouragement and questions while I was tapping away on my Blackberry, including some excellent exchanges with Kevin Clauson whose article, “Scope, Completeness, and Accuracy of Drug Information in Wikipedia,” was cited by Tim Vickers in his remarks. It was kind of a health geek, Marshall MacLuhan in “Annie Hall” moment for me (only in terms of pulling an expert into the conversation, NOT that Vickers was loud or obnoxious – quite the opposite!).

Social media, FTW!

The summit program is a treasure trove of ideas for conference organizers who want to answer Gilles Frydman’s call to action.

“Taxpayer access” – the principle that American taxpayers should have free, timely, public access to the results of publicly funded research – would change this, and put critical biomedical research into the hands of those who need it.

In the U.S., the NIH has been the first federal agency to champion a policy for public access to the critical biomedical research it funds, through its Policy on Enhancing Public Access to Archived Publications Resulting from NIH-Funded Research, which was implemented in 2005. The NIH policy first requested eligible investigators to deposit copies of their final, peer-reviewed manuscripts into PubMed Central, so that they may be made publicly available twelve months after publication. (While agencies around the world, including the Research Councils UK and the Canadian Institutes for Health Research, have backed six-month embargoes, the NIH adopted a twelve-month window as a compromise with journal publishers who feared a loss in revenues).

The policy would accomplish three important goals for the NIH:

• ARCHIVE. A central collection of NIH-funded research publications preserves vital published research findings for years to come.
• ADVANCE. The archive is an information resource for scientists to research publications and for NIH to manage better its entire research investment.
• ACCESS. The archive makes available to the public research publications resulting from NIH-funded research.

After its first year in place, the voluntary policy attracted deposit of less than 5% of NIH-funded articles. Following review by a variety of panels, including the stakeholder-representative Public Access Working Group and the NLM Board of Regents, it was recommended that the NIH Public Access Policy be made mandatory for researchers, to ensure its success.

The shift to mandatory was codified with the Consolidated Appropriations Act of 2008, signed into law by President Bush on December 26, 2007. By law, the NIH was required to change its policy so that participation and deposit are mandatory for eligible researchers.

Even before the revised policy was implemented in April 2008, researcher participation rates shot skyward. After implementation, submission rates have reached 65%.

(Graphic from NIHMS Monthly Aggregate Submission Statistics at http://www.nihms.nih.gov/stats/index.html)

In a recent testimony before Congress, NIH Director Zerhouni demonstrated the undeniable and tremendous advances made possible when research is accessible and searchable:

“When viewing a report in NIH PubMed and PubMed Central databases, at the touch of a button we can link to papers that are determined to be related, as well as to papers that were actually cited. We can also link to related chemical structures, proteins, viruses, and other data, allowing us to make discoveries that advance science and even prevent deaths…”

For example, about three years ago, a child was hospitalized with an undiagnosed illness in Minnesota. The state health laboratory had isolated an unknown virus.

After determining the DNA code of the virus, laboratory staff used the internet to access the 55 million DNA sequences at NCBI and immediately found a match. The virus turned out to be the first polio case in the United States since 1999…

With these new life-saving tools, the main limitation on their use is the capacity to store and retrieve the data, given the extent to which data is being submitted. While today we are storing and retrieving only a fraction of the data and findings that could be available, the mandatory public access policy enacted last year will increase the scale of information that will be available from the library.

Despite these advances, despite the importance of taxpayer access to publicly funded research, and despite the long collaboration in the development of the NIH policy, there is a move to reverse this policy and prevent other U.S. federal agencies from ever enacting policies for public access to research. On September 11, U.S. House Judiciary Committee Chairman John Conyers (D-MI) introduced the “Fair Copyright in Research Works Act” (HR6845) to amend current U.S. copyright law and permanently disable public access to taxpayer-funded research in the United States.

HR6845 is broadly opposed by the majority of stakeholders, including thousands of academic and research libraries, hundreds of patient advocacy organizations, dozens of leading copyright scholars and attorneys, and 33 Nobel Prize-winners. Nonetheless, we expect this bill will be re-introduced in the 111th Congress and that attempts to undermine the NIH policy will continue.

Health professionals have a key stake in supporting free and open access to biomedical research in the U.S. Access to up-to-date, health-related information plays a crucial role in ensuring that you and your patients are as educated as possible about individual situations. Please, let Congress know you support public access and oppose HR6845.

Jennifer McLennan is the Director of Communications for SPARC (the Scholarly Publishing and Academic Resources Coalition). SPARC is co-founder and administrator of the Alliance for Taxpayer Access. Jennifer may be reached through jennifer@taxpayeraccess.org.

1) The term “e-patient” describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. And naturally the e also stands for electronic. Would you identify as an e-patient? Is there another term you’d use?

No doubt about it, I am an e-patient. There are no handy-dandy pamphlets lying about a doctor’s office about my condition, Common Variable Immunodeficiency (CVID); it’s not well-known or fully understood. I rely on the internet to help me stay informed about my care. Not all physicians are receptive to patients doing their own research. One explained to me that he had spent years developing his skills as a diagnostician, only to have patients come in and tell him what they had before he even had a chance to examine them. So there’s a fine line between being an educated self-advocate and being the person who shuts down a relationship with another human who just may know what you need.

I depend on research and information gleaned through the internet: through NIH, through the US’s Immune Deficiency Foundation and the UK’s Primary Immunodeficiency Foundation; through pharmaceutical company sites; and even through individual blogs. I have learned the pros and cons of delivery methods for my gammaglobulin therapy; I have learned more about related autoimmune concerns. In return, I share a bit about my experience with CVID on my blog, as it may one day help someone out there who is struggling to come to grips with the diagnosis.

Additionally, when you receive a whopper of a diagnosis, you have to contemplate your existence within the world of health insurance. You now have a pre-existing condition, and if you lose your health insurance and don’t get picked up somewhere else after a certain period of time, you probably won’t get insured again, a devastating blow to anyone who relies on therapies which are otherwise unaffordable. Thanks to the internet, I was able to speedily discover the laws in my state about health coverage.

2) Were you always this engaged in your health care, or did your CVID diagnosis trigger it?

I have always been a researcher. As a mom, I have used those skills to investigate my children’s health issues online. But what kicked my internet health research efforts into high gear for me was an autoimmune condition, Idiopathic thrombocytopenic purpura (ITP), which landed me in the hospital for two weeks and which, I have since learned, is a common predecessor for CVID. One day I had platelets; the next day, I didn’t. And no one knew why. But I helped to put all the pieces together: family history (a member of my family has CVID), my own health history, and internet research. Although one doctor told me that he believed it highly unlikely for two family members to both have CVID, my internet research, coupled with my personal data, proved otherwise. Two immunologists later, I have been diagnosed, am in treatment, and am feeling better than I have in awhile!

3) In a previous stage of life you managed a prominent think tank’s website – how have you applied those skills and experiences to your current work? Was there anything else in your background that may have prepared you for what you are dealing with now?

I received a masters in Public Policy/Political Science from a program that emphasized operationalizing your strong quantitative and research abilities in real world situations. You were not going to spend your days locked up in the ivory tower of a higher education institution; you were going to go out into the world and make it work. My work experiences in education policy research gave me a solid foundation in analysis and advocacy, which are highly valuable skills when applied to health issues. For one thing, you have to be a very discerning consumer of the research on the web. You’ve got to know which sources are reliable and which are not, as erroneous information can sometimes be life-threatening. Some sites can tout data, saying something absurd like: “100% of the people surveyed said aloe juice is a wonder elixir.” When you find out 100% means one person interviewed out of a total pool of one person, well, that 100% doesn’t mean much, does it.

And once you know what you’ve got, you have to be your best advocate. For the past two years, I feel like I have become a professional patient. Because people with CVID are at higher risk for lymphoma, stomach cancer, lung and other issues, I must visit several different doctors each year and get scanned frequently. (I probably glow in the dark.) There was a time when I was a much more trusting patient. After being patronized and marginalized one too many times, I don’t accept that anymore: not for myself, and certainly not for my family. I am grateful for the doctors I have found who I feel are true partners in my continued health. And I will remain an advocate for my family’s health.

About 14 years ago, I moved away from policy work and started out life doing technical and content work on the internet. I still remember when my then-company was developing a site for health information, a place for people to meet others like themselves. I don’t think that site still exists, but I’ve never forgotten a lesson I learned from that and other sites I helped to develop and manage: community is powerful. You may not know people in your town or city who have your condition. And maybe you prefer a level of anonymity because of your condition. On the internet, you can find people who struggle as you do, and you don’t even have to tell them your real name. And the support is strong. I have seen people develop very real, long-term relationships with others, whether they are pregnant women who are all due to give birth during the same month or people battling cancer.

And reaching out via the internet is now an ingrained habit in our world. Even while managing a think-tank website, I had a lot of emails from strangers, strangers reaching out. They had read our research on health issues, or justice issues, or something else, and could I direct them to a place where they could find people who could help them? Like I said before, community is powerful, and there are a lot of people who are looking for their place to fit in and heal whatever ails them.

4) Was there a lightbulb moment for you when it comes to online engagement and health care? If there wasn’t just one moment, can you cite an example of how the internet played a crucial role in your care or the way you take care of your family?

As I mentioned before, my lightbulb moment came while I was healing from the ITP hospitalization. The medical people I knew were mystified as to why this would happen (hence why it is called an idiopathic condition.) Something in me just knew that it had to do with CVID: it just seemed like this was how it played out with my other family member; and my ITP didn’t respond much to steroids, but it did respond to IVIg, also known as gammaglobulin, the blood product used to treat CVID. So I began to research ITP and CVID, and I came to find out that people with CVID often *do* end up with related autoimmune issues, particularly ITP. Suddenly, it all made sense to me. After blood tests and scans were completed with two immunologists, voila! I had a diagnosis.

While there’s nothing happy about being diagnosed with something like CVID, there is a certain sense of relief you feel when you know what is happening to your body. Would I have figured this out without the internet? Certainly not as speedily as I did.

(If you liked this interview, check out the interviews of the Stirrup Queen and Amy Tenderich.)