I especially appreciate your notes about how the Pew Research/Pew Internet data was used at the FDA hearing since I wasn’t able to attend. For the record, I am happy for anyone to cite our data as long as they cite it accurately. I describe the trends, I don’t judge them.

Maybe I’ve lived in DC for too long, but I wasn’t surprised that the hearing was dominated by agencies and industry reps. Non-industry types are not tuned in to the hearing calendar and would have to pay their own way (and probably take vacation days) to attend. Just ask anyone who has scrambled to get “real people” to stand behind the President at a bill signing or public event.

That’s the genius of the online comment period. People can voice their opinions any time of the day or night from their own homes. Thanks for providing that link!

I attended the FDA Internet and Social Media hearings and I have a few thoughts that have been bothering me ever since.

The hearings suffered from a tendency on the part of speakers to repeat the same thing over an over again, I suppose in the hopes that the FDA would just believe it if they heard it often enough. A few of these repeated assumptions included:

– Pharmaceutical companies are the best providers of online healthcare information simply because their marketing materials are regulated by FDA.

– DTC marketing, and pharmaceutical companies potential use of social media, advances health literacy and public health – consequently, by limiting industries’ participation the FDA is limiting the public health benefit available through the Internet.

– DTC marketing is educational in nature and patients want more of it and want pharma to join the conversation in online health communities.

Some of the data-driven presentations were interesting particularly those that showed results of studies on how patients really interact with risk and side effect information in online ads and on product websites. However, the studies were limited in size and need to be enlarged before conclusions can be drawn.

It was unfortunate that the hearing was not attended by more of the online patient community and I would suggest that FDA would benefit from holding a second hearing for this group or that they broadly communicate the request for comment and the open docket through their own social media efforts.

Pew data was quoted continually to prove that more and more people, patients, and physicians are looking for healthcare information online but the data was used primarily to support the idea that pharma marketing should be more freely delivered to healthcare information seekers.

So why did any of this bother someone who is paid to develop DTC and DTP marketing campaigns?

- I passionately believe in patient empowerment

- I fully believe that education and easy access to real medical information is critical in taking control of your health

- I understand and use the Internet as a powerful information gathering and distribution tool every day

- I do not accept that DTC advertising is educational in nature. (Companies do develop educational programs but these are separate from advertising and in my experience have been second in line when it comes to budget allocation.)

- I question the assumption that companies are the best online sources of medical information for patients

I am concerned that not enough voices were heard during the hearings and that it became and continues to be an agency and industry dominated conversation. Just read the posts on #fdasm before, during and after the hearings.

I encourage e-patients, patient advocates, online patient communities to submit comments to the docket that specifically address the questions posed by the FDA available here:

http://edocket.access.gpo.gov/2009/E9-22618.htm

Docket is open until February 28 2010.

As for the Hospital Compare tool, this is the first time in years that I see a governmental resource that trumps every commercial Internet offering. That is quite some accomplishment! The fact that the traffic remains limited just shows that the population is either not aware of its existence, does not understand what it can do, is not convinced that anything significant can be achieved with this tool.

This is all so exciting. Lots of new tools. Incredible amount of data. Loss of authority left and right. A system in severe financial crisis and with universal impact. And an underlying communication technology that is a game changer so profound we can’t fully grasp how long its revolutionary effects will shake everything in its path.

The Cochrane Collaboration develops a large number of the published systematic reviews of best evidence on healthcare interventions, available electronically on The Cochrane Library. Systematic reviews are integral to the collation of evidence to inform clinical practice guidelines. They are also an integral part of health technology assessments, where the cost-effectiveness of healthcare interventions is determined for a particular health system.

With the availability of the internet we are able to readily share information. We are also acutely aware of disadvantage for many of the World’s populations. What this has meant is pooled efforts. Now we have not only the World Health Organization but also The Cochrane Collaboration, Guidelines International Network, and Health Technology Assessment International. What is common among these organisations? They involve the users of health care, including patients, consumers and carers. The latter three organisations have a formal consumer/patient and citizen group that informs their work. In this way we work to make the evidence relevant, accessible and being used. We all have to be discerning whatever knowledge we are given and apply it to ourselves.

Janet Wale is a member of the Cochrane Consumer Network

I enjoyed that NYT article so much – hence the depth of my disappointment with that short section on consumers’ interest in their own health care.

But saying that the hospital compare site garners 5% of traffic to HHS? Sorry, I’m not impressed. Where’s the widget that people can install on their own sites? Where’s the iphone app (a leading indicator of what’s possible, don’t come down on me for promoting a tool of the elite)?

In the good news column, when you search for “hospital compare” the Medicare site comes up first in Google, Bing, Ask, and Yahoo (which goes back to Kevin’s point that search is still king in health).

about the point regarding the Medicare published data: I wouldn’t look at it that way There are too many cases of published governmental data that are seldom used.

In most cases, there is a big difference between published and findable. So the onus is usually NOT on the individuals but on the government who should publish easily findable data.

In this case, though, it looks like the hospital compare site IS used by people. It represents almost 5% of all traffic on the various HHS web properties, according to data from Alexa. (see http://www.alexa.com/siteinfo/hhs.gov )

http://www.thehealthcareblog.com/the_health_care_blog/2009/11/by-susannah-foxi-scan-menus-for-keywords-fig-parsnips-salmon-and-it-turns-out-i-scan-twitter-the-same-way-looking-for.html#comments

Regarding Gilles’s point about consumer vigilance, I want to point out the straw-man setup for patient interest/involvement in health care decisions in Sunday’s NYT magazine story, “Making Health Care Better”:

http://www.nytimes.com/2009/11/08/magazine/08Healthcare-t.html

“In the end, though, it is not clear how many decisions most patients really want to make. For the past several years, Medicare has published data on the Web comparing hospitals on various measures, like infection rates and surgical-complication rates. Patients have largely ignored it. (Do you know which hospitals to avoid where you live? I didn’t before writing this article.)”

So we’re going to blame consumers for “ignoring” the Medicare tool? Anyone care to guess the marketing budget for Medicare.gov or HHS.gov? It may indeed be true that many – even most – people want their docs to make decisions for them, but the above observation is not proof.

These articles are very interesting. They also help me my point even stronger.

I am a great fan of the Cochrane reviews and have been mentioning them for many years on various ACOR groups, because they appear to be more trustworthy than other “authoritative” publications.

That is why it was so shocking to discover a totally flawed report in 2004. And why it was even more shocking to see the reaction of both the main authors and the Cochrane Collaboration when confronted with an obviously mistaken report. They could not offer a public apology and could not say publicly that the results were completely on the opposite of what we all knew.

That experience helped convince me even more that we, as consumers/analysts of medical information must ALWAYS be vigilant, regardless of the information producer reputation. And that is why I do not believe in any seal of quality for medical websites. Their presence can only engender a lack of critical analysis.

But when all is said, the Cochrane reviews remain the most trustworthy professional publications, great to understand the accepted “gold-standard”, although these gold standards are suffering from the lethal lag-time associated with most professional peer-reviewed publications.

I take back my YIKES and instead will insert a THANKS! This is why I love the internet – something you wrote back in June is cited on Twitter in November, discussed on a blog, and then clarified for the eternal record (which will, no doubt, continue to evolve).

So nice to meet you, by the way!

In my updated blog post I also refer to other posts I wrote on the subject.
Since it is late (early) here, I stop for the moment and hope to take part in the discussion later on. (provided you don’t say YIKES again)

Jacqueline

Thanks for your comment…and yes, I am also curious to see where this leads (both the conversation and actually what we are conversing about in real life).

I think at least a segment of people will continue to rely on search engines in the near future. My belief is based on the body of survey research conducted to date by various organizations and institutions on the topic as well as reinforcers like some pilot data we have. If you add in a mashup of human nature and the Newtonian first law of motion – it further underlines this likelihood.

However, what this means in actual practice is that people start searching on Google and Google frequently takes them to Wikipedia. Period. General online health info seekers rarely restart searches for ’second site opinions’ or verify data/quality indicators (as pointed out by Pew & others). The exception is those interested/afflicted with higher severity/lower certainty treatment option conditions will dig a little deeper. I think there are some commonalities between this and the fact that AIDS and mental health patients are among the most self-informed/self-educated (when compared to say hypertensive patients).

There are some challengers…and not all of the user-generated type. For example the Rodale/FDA-DDMAC study found that almost half of consumers reported online videos as a top source when searching for health/drug information (http://www.rodaleinc.com/newsroom/12th-annual-survey-iconsumer-reaction-dtc-advertising-prescription-drugsi-reveals). But it also listed Wikipedia as a top text source for user-generated info (36%).

Ultimately, as long as Wikipedia is on that first page of Google results (regardless of whether people type diabetes, acute lymphoblastic leukemia, chronic fatigue syndrome, or hyperlipidemia), it will drive people there. That is why I am currently trying to help figure out ways it could be *a* right platform.

The patient perspective, particularly the reference to the popular cranberry/UTI article, was what caught my eye. It reminded me of two posts:

E-patients Unite To Document Problems with Generic Drug, by Joe Graedon
http://e-patients.net/archives/2008/04/e-patients-unite-to-document-problems-with-generic-drug.html
- consumers documented significant problems with a generic drug – problems that the FDA hadn’t caught

Cyberchondria: Old Wine in New Bottles, by moi
http://e-patients.net/archives/2008/12/cyberchondria-old-wine-in-new-bottles.html
- migraine sufferers weren’t asked what they wanted to learn = information FAIL

Smart companies (and federal agencies) see networked patients as colleagues. They can serve as an early-warning system for whatever it is you are trying to develop or disseminate.