Tell the FDA the whole story, please

I scan menus for keywords (fig, parsnips, salmon…) and it turns out I scan Twitter the same way, looking for anyone who is talking about my favorite topics (data, consumers, information quality…)

So when I saw Jonathan Richman‘s tweet the other night, I couldn’t resist it:

Anyone ever seen data on the overall accuracy of medical information found online? Need help for some final stats for #fdasm

Short answer:

No.

Long answer:

The Pew Research Center’s Internet & American Life Project has been reporting on the social impact of the internet since 2000, when “information quality” on health websites was a big part of the conversation. It was the era of wagging fingers, scolding patients for straying too far outside their boundaries, and Pew Internet data was ammunition.

We released our first report about the internet’s impact on health & health care in November 2000. The Medical Library Association (MLA) contacted us, asking for research looking at how consumers decide which sites/sources to trust. With their help we created a set of questions asking first if respondents went online for health info, then asking if they look for the source and date of the info they find (the two key quality indicators according to the MLA).

Our 2002 report, Vital Decisions, reported the findings:

Only about one quarter of health seekers follow the recommended protocol on thoroughly checking the source and timeliness of information and are vigilant about verifying a site’s information every time they search for health information.  Another quarter of health seekers check a site’s information “most of the time.”  Half of all health seekers search for medical advice and “only sometimes,” “hardly ever,” or “never” check the source or date of the information they read online.

We repeated the source/date questions in August 2006 and reported on the “demand side” of health information in our report, Online Health Search 2006:

Three-quarters of health seekers do not consistently check the source and date of the health information they find online.

Unbeknownst to us, the U.S. Department of Health and Human Services was in the field with their study about the “supply side” of health info: Estimating the Proportion of Health Related Websites Disclosing Information That Can Be Used to Assess Their Quality.

I summarized their findings in our report, hoping to soften the impact of the ammunition we were handing out:

Health seekers might be forgiven if they give up what at times is a search for a needle in a haystack. A recent study commissioned by the U.S. Department of Health and Human Services (HHS) finds that a tiny percentage of health sites display the source and date of the information on their pages…

HHS’s Office of Disease Prevention and Health Promotion, working with industry experts, identified six types of information that should be publicly disclosed to health seekers: the identity of the site’s sponsors, the site’s purpose, the source of the information provided, privacy policies to protect users’ personal information, how users can provide feedback, and how the content is updated. Of the 102 websites reviewed for the report, none met all six of the disclosure criteria and only six complied with more than three criteria. Just 4% of “frequently visited” health websites disclosed the source of the information on their pages and 2% disclosed how the content is updated. Less-popular health sites fared even worse: 0.3% of these sites listed their content’s source and only 0.1% disclosed how the content is updated.

After reading the HHS study, looking at our data, and scanning the changing landscape (ie, consumers diversifying their online research to include user-generated content), I decided that trying to measure the quality of health info had run its course as a research question.

Pew Internet was also gathering evidence that consumers were not being harmed by inaccurate information. In a 2008 survey we conducted in partnership with the California HealthCare Foundation, just 3% of e-patients said they or someone they know has been harmed by following medical advice or health information found on the internet, a number that has remained stable since 2006. Meantime, 60% of e-patients (or 42% of all adults) said they or someone they know has been helped by following medical advice or health information found on the internet. That’s an increase from 2006 when 31% of e-patients (25% of all adults) said that.

After exchanging a few tweets and then sending a long email, I was pleased to see our data used in Jonathan’s upcoming presentation to the U.S. Food and Drug Administration‘s hearing on social media. But I worry that only the “three-quarters don’t check” data made it in to his slides, not the needle-in-a-haystack caveat provided by the HHS study.

Are we really going back to the era of scolding patients for not checking the source and date of health information they find online? If so, it’s my duty as the purveyor of that ammunition data point to speak up.

To everyone who is providing insights to the FDA: Tell the whole story. Help the FDA see not only the reality of today’s information marketplace, but tomorrow’s, which is increasingly mobile and social.

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Comments

49 Responses to “Tell the FDA the whole story, please”

  1. ePatientDave says:

    Important>>RT @SusannahFox: New post: Tell the FDA the whole story, please. Health info is mobile and social. http://bit.ly/37uO1U #fdasm

  2. ePatientDave says:

    @stales Also check out the side effect treatment she found that FDA doesn't talk about http://is.gd/4Qrzz (for v painful side effect)

  3. Re scanning menus for keywords, same for Twitter: you familiar with Tweetbeep? It’s basically Google Alerts for Twitter. Delivered to your inbox, immediately or daily or whatever.

  4. Susannah, Great point, once again. But to be fair, isn’t this the wave of the now? You can’t tell the whole story in 140 character sound bites. How do we change that phenomenon?

  5. Jodi Sperber says:

    Great post, and timely given both the FDA hearings as well as a current RFI from the NIH re: how consumers are using the Internet (https://nihhealthinforfi.cit.nih.gov/bpurpose.asp).

    As a doctoral student interested in the intersection of social media and health, I continually search for data sets/questions on surveys that help get at the question of how the Internet is influencing health care decision making. Your work has been helpful in this regard.

    Your last comment re: becoming increasingly mobile and social is really the key, IMHO. Centralized spaces of information certainly still exist, but more and more I believe we’re going to see decentralized, two way communication streams increasingly play a role in how we make sense of our health and well being.

    Of course, what I would like to know is w

  6. Jodi Sperber says:

    whoa – scratch that last bit. the sentence got away from me. didn’t mean to make it a cliffhanger. :)

  7. Andrew Spong says:

    RT @jonmrich "Tell the FDA the whole story, please" @SusannahFox has a good point, so I will #fdasm http://su.pr/2YlSj3 (via @ellenhoenig)

  8. Gwynne says:

    RT @SusannahFox Tell FDA the whole story-Health info is social http://bit.ly/37uO1U [don't blame health info consumers 4 bad websites]

  9. Andrew Spong says:

    ePatients need quality health information: relevant, timely, relevant, accessible. Who will provide it? http://is.gd/4QJrX #EBM #fdasm

  10. [...] choice. How much and which type of information does a patient need to make informed health choices? How good is the information patients find on the internet? And if we do give them access to more information, how do we make [...]

  11. RT @cindythroop 3 posts related to #fdasm @SusannahFox http://bit.ly/3N8VtB @WhyDotPharma http://bit.ly/5JGoQ @PharmaGuy http://bit.ly/UhNRx

  12. Susannah Fox says:

    Dave, thanks – I didn’t know about Tweetbeep (but to be honest, I’m leery of any apps these days w/all the phishing/hacks happening on Twitter).

  13. Susannah Fox says:

    Thanks, Cheryl, you are right that soundbites (and now tweets) can’t possibly capture all that we need to say or mean to say. That’s why Jonathan & I took our conversation to email after the 3rd tweet, why he posted his full slide deck, and why I wrote this post :)

    In defense of Twitter, I just saw an awesome summary of my post by @ShebaMuturi:

    @SusannahFox to @jonmrich: 3/4 pple don’t check source & date of hlth info but v. few sites display this info http://su.pr/2YlSj3 #fdasm

    Health literacy & numeracy are serious issues, as is the quality of health info found online, but I want us to keep our eye on the ball and not get sidetracked by focusing on citizens’ failure to find a needle in a haystack.

  14. SusannahFox says:

    Nice summary! RT @ShebaMuturi 3/4 pple don't check source & date of hlth info but v. few sites display this info http://su.pr/2YlSj3 #fdasm

  15. RT @SusannahFox: Nice summary: 3/4 ppl don't check health info source/date but v. few sites display it http://su.pr/2YlSj3 via @ShebaMuturi

  16. RT @SusannahFox @ShebaMuturi 3/4 pple don't check source & date of hlth info but v. few sites display this info http://su.pr/2YlSj3

  17. Kevin Clauson says:

    My answers to the original post-inspiring question are similarly:

    Short Answer:
    No – that information does not exist yet.

    Long answer:
    There will likely be a meta-analysis in the next two years published on this topic, but it will suffer a bit due to the substantial heterogeneity of the data from the component studies. Fortunately, we are approaching a critical mass in the literature of evaluations of online health information quality – including those in online medical communities, association sites, and wikis – for such an analysis to be indicative. Studies evaluating the accuracy of online health info as well as tools for that purpose (e.g. DARTS, DISCERN, etc.) are important, but other factors like readability/usability play very important roles and are often overlooked.

    Our own forays into this topic examining the accuracy medication information in Wikipedia (http://www.theannals.com/cgi/content/abstract/42/12/1814) and its readability (http://www.slideshare.net/DPelcher/readability-of-the-top-50-prescribed-drugs-in-wikipedia) have had three distinct conclusions (externally) drawn. The specific conclusion highlighted seems to be dependent on the perspective/agenda of the individual making it and includes: 1) Wikipedia is ‘safe’ to use as it has no inaccuracies (errors of commission), 2) Wikipedia is very ‘dangerous’ as it has many inaccuracies (errors of omission), and 3) The wiki/wisdom of crowds model has been ‘proven’ since the study found that drug information in Wikipedia statistically significantly improved over time. I see an analogous situation here in relation to your ‘tell the whole story, please’ point.

    I maintain that it will be easier to improve the quality of health-related information in Wikipedia than to change the search habits of an entire population. Wikipedia may also be the lone centralized information source to remain standing. That’s why I’m hopeful that the NIH and healthcare professional organizations create or extend their existing efforts in soliciting members to be contributors. I think resources like Medpedia may serve a purpose, but have an uphill battle of external and internal factors. As an internal factor, I am surprised that Medpedia will not allow me to directly contribute as I am ‘ineligible’ (i.e. only MDs and researchers with a PhD can directly edit). In my case, I completed four years of undergrad, followed by four additional years for my Doctor of Pharmacy, and then spent two more years training in a research fellowship. However, neither I nor anyone else with my training is permitted to edit an entry on a medication in Medpedia. I don’t know what, if any, impact these restrictions have – but I can’t imagine it helps the quality of information online.

    The upcoming FDA hearings on social media are an opportunity to address aspects of this issue as well. We tried to add to the dialogue back in 2007 by contributing to the peer-reviewed literature (http://www.palgrave-journals.com/jmm/journal/v8/n4/abs/jmm200820a.html). Our impetus in doing so was that some colleagues and policy makers don’t truly consider issues (despite what happens in practice) until they can see it in something citable. I am similarly hopeful that as more articles on social media/Web 2.0 and healthcare appear in journals, traditionally conferred ‘legitimacy’ will accompany these topics in the eyes of a more resistant audience.

  18. Paul Loebach says:

    Well stated, Susannah. I hope the FDA does get the whole story from everyone who speaks.

    I have but one personal comment. Perhap it’s a bit cynical, too. You’re statement that only 3% reported being harmed or knowing someone who was harmed by inaccurate medical information is not a good indicator that consumers are not being harmed. With the growing number of people getting digitally connected and looking online for medical information, that 3% becomes a higher and higher raw number of adverse events, medication errors, public health hazards, etc.

  19. Wikipedia as the source of trusted medical information? Wikipedia as the lone centralized information source to remain standing?

    These 2 statements are far reaching and I believe they do not correspond to the reality. Wikipedia may be good for entries that relate to medical conditions touching a significant number of people but they are at best mediocre when you enter the word of the long tail of medicine. The editors of the medical pages of Wikipedia behave, surprisingly for representatives of a Health 2.0 entity, as dinosaurs and protectors of the established order. I had a famous argument with them about the “innapropriate” links I was adding to wikipedia entries for various types of rare cancers.

    My crime? Linking directly from the wikipedia entries to the ACOR community speicialized in each specific type of rare cancers.

    If you believe that there is any better place to find accurate, complete and timely information about a rare condition than an active online community for that condition you are a fine example of the Dinotyrranus Digitatus species. Have a look at our exchanges
    http://en.wikipedia.org/wiki/User_talk:Kosherfrog#Suggestion

    The folowing comment from another editor is also interesting:

    “Wikipedia’s external links policy and the specific guidelines for medicine-related articles do not permit the inclusion of external links to non-encyclopedic material, particularly including: patient support groups, personal experience/survivor stories, internet chat boards, e-mail discussion groups, recruiters for clinical trials, healthcare providers, fundraisers, or similar pages.

    Wikipedia is an encyclopedia, not an advertising opportunity or a support group for patients or their families. Please do not re-insert links that do not conform to the standard rules.”

    What needs to be done, is to help the major search engines become constantly better about surfacing hard to find information, regardless of their origin. And as I have tweeted this morning, this cannot be achieved by FDA regulations or seals of approvals. The FDA should bring in regular people who are managing real grassroots online resources. They would learn something about the true nature of social media.

  20. Susannah Fox says:

    Jodi, thanks so much for the link to that RFI:

    https://nihhealthinforfi.cit.nih.gov/bpurpose.asp

    And I’m very happy to hear that the Pew Research Center’s data is useful. Hopefully you have taken advantage of our free data sets (SPSS, crosstabs, etc):

    http://pewinternet.org/Data-Tools/Download-Data/Data-Sets.aspx

    Please let me know if you have questions: sfox (at) pewinternet (dot) org

  21. Kevin Clauson says:

    I think any predictive statement is inherently going to be far reaching…or possibly too much of a ‘reach’. Because the two items from my comment you paraphrased are predictive – that also means they are contingent upon a series of ‘if -> then’ statements. For instance, if the NIH continues its collaborative efforts in the Wikipedia Academies to improve health information and develops a system to get real buy-in from those with traditional expertise to edit, then Wikipedia stands a chance of improving to the point that it is a trustworthy source of medical information. Is it a trustworthy source right now? No. That is why we wrote in our Annals article, “Wikipedia may be a useful point of engagement for consumers, but is not authoritative and should only be a supplemental source of drug information.”

    I am aware of the difficulties you (and others) have had with Wikipedia’s editorial system and policies. I even received a fair amount of what is best characterized as ‘hate email’ from Wikipedia supporters when our study of it was first published. I have also observed Wikipedia’s recent trend in becoming more exclusionary and restrictive (some have argued elitist) in their approach as they are undergoing a full cultural shift. I recall in a conference held recently they were also self-critical regarding their lack of diversity (something like 80% of actives being young and male) and lack of trust. So, Wikipedia has problems (some of them growth- related) but problems I hope can be dealt with because I think the skeleton of what has been built holds promise.

    As far as the lone centralized source of information…yes, I think it could be – of that scope for this type of model (I don’t think other models like MedlinePlus, etc. are going anywhere soon). Wikipedia can aspire to be a generalist clearinghouse of health information. However, the existence of a centralized source does not preclude multiple specialized resources from co-existing. In fact, those smaller sources are not only possible, they are necessary. This model mirrors any other facet of healthcare representing necessary levels of specialization (ignoring for the moment we are running low on generalists). It would obviously be helpful if there were also formal connections/links between Wikipedia and the specialty sites mimicking an open referral service, as well as more optimal search engine aspects. Again, this does not reflect the current environment – but just consider if it did!

    I appreciate your efforts and I even joined your Society about a month ago. But I stand behind what I posted. Wikipedia could definitely evolve into a trusted source of health information. And it could be a lone source of general health info depending upon where resources are invested. That is why my current efforts include exploring methods to improve the quality in its identified shortcomings rather than simply condemning it by pointing to our findings that Wikipedia was missing medication information in 60% of the entries we assessed.

  22. Susannah Fox says:

    Kevin, your comment is worthy of a separate post! Thanks so much for raising questions about readability, usability, and the legitimacy of non-MD perspectives.

    Andrew Spong linked me to a blog post that is so pertinent I have to quote extensively from Laika’s MedLibLog:

    http://laikaspoetnik.wordpress.com/2009/06/13/cecem-david-tovey-the-cochrane-librarys-first-editor-in-chief/

    How quality is perceived is dependent on the end users. There are several kinds of end users, each with his own priorities.

    1. doctor: wants comprehensive and up-to-date info, wants to understand and get answers quickly.
    2. patient: trustworthiness, up-to-date, wants to be able to make sense of it.
    3. scientist: wants to see how the conclusions are derived.
    4. policy and guideline-makers.

    Reliable: Several articles have shown Cochrane Systematic Reviews to be more reliable then other systematic reviews (Moher, PLOS BMJ)*

    Timely: First it takes time to submit a title of a Cochrane Review and then it takes at least 2 years before a protocol becomes a review. Some reviews take even longer than 2 years. So there is room for improvement.

    Patients are also very important as end user. Strikingly, the systematic review about the use of cranberry to prevent recurrent urinary tract infection is the most frequently viewed article,- and this is not because the doctors are most interested in this particular treatment….

    Doctors: Doctors often rely on their colleagues for a quick and trustworthy answer. Challenge: “can we make consulting the Cochrane Library as easy as asking a colleague: thus timely and easy?”

  23. SusannahFox says:

    Debate is breaking out on e-patients.net (including pushback on one of my #1 data points): http://bit.ly/37uO1U #fdaSM

  24. Shwen Gwee says:

    RT @SusannahFox: Debate is breaking out on e-patients.net (including pushback on one of my #1 data points): http://bit.ly/37uO1U #fdaSM

  25. Susannah Fox says:

    Paul, thank you so much for the pushback on one of my favorite (and often quoted) data points. Keep the critiques coming, people, or I’m going to think that either nobody’s listening or all the research I do is perfect (and I know it’s not).

    Here’s what I wish for: Evidence. Either way.

    Is the internet a net positive for health & health care, or not? Is access to online communities saving lives or are those community members fooling themselves?

    Evidence. Measurement. Medical informatics. Bring it on.

    Until then, I’ll keep pointing out that in 10 years of survey research we have consistently found that the majority of American internet users are finding online health resources to be helpful. And only 3% of internet users say it’s been harmful.

  26. 1. Susannah, that blog post has this amazing statement: “Reliable: Several articles have shown Cochrane Systematic Reviews to be more reliable then other systematic reviews (Moher, PLOS BMJ)*”

    I checked the asterisk: “*have to look this up”

    As you are aware the Cochrane report on the effect of Internet medica resources on patients was worse than flawed when it appeared first and generated true fear-mongering across large swaths of the UK and US population. The Times published “Internet makes us sick, the BBC published Warning on internet health advice: People with chronic disease should think twice before relying on the internet for health advice, research suggests.

    Unlike the press and media, we didn’t buy the result of the report because we have learned to be constantly on the lookout for bad information, regardless of the information origin. As the various posts on e-patients regarding bias and pure fraud in peer-reviewed publications have shown over time, there is no reason to ever trust published information blindly. It is a disturbing and sad reality.

    2. Kevin,

    I think we are having a fascinating conversation! As Susannah said, your comments are worth their own post. I believe we are touching on some very interesting points that will help decide the future of the Internet: will people become more and more dependent on the search engines, making them the only information rich portals left or will they, instead, navigate to places like wikipedia where some form of User Generated Content will provide the main source of information to the public at large?

    Based on my personal experience and interaction with a few Wikipedia editors I am convinced that Wikipedia is the wrong platform to generate and deliver trustworthy, complete, accurate and timely information for ALL of medicine. The strength of search engines will continue to be their ability to constantly surface valuable information published in a myriad of places, often unexpected. What do you think?

  27. RT @SusannahFox: Debate is breaking out on e-patients.net (including pushback on one of my #1 data points): http://bit.ly/37uO1U #fdaSM

  28. mrgunn says:

    RT @SusannahFox: Debate is breaking out on e-patients.net (including pushback on one of my #1 data points): http://bit.ly/37uO1U #fdaSM

  29. Susannah Fox says:

    Yikes, that asterisk should have been about 100x bigger — thanks for the clarification, Gilles!

    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.

  30. Kevin Clauson says:

    Gilles,

    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.

  31. [...] this blank “citation” till this post was cited quite in another context (see comment: http://e-patients.net/archives/2009/11/tell-the-fda-the-whole-story-please.html) and someone commented that the asterisk to the “the amazing statement” had still to be [...]

  32. Jacqueline says:

    Susannah, thanks for your excellent post and the fact that you referred to one of my posts.
    People should keep in mind however, that this is a post summarizing a presentation I attended at a Cochrane meeting, which just happened to mention that Cochrane systematic reviews are on average better than other systematic reviews. My notes were insufficiently detailed to easily find the paper the speaker, D Tovey, talked about and since he didn’t put the slides online I forgot.
    Prompted by your remarks, I did a search and found some studies in support of these findings (see my post here). I think that the evidence I found in favor of the higher quality of Cochrane Systematic Reviews is somewhat more convincing than the anecdotal evidence of one poor Cochrane Systematic Review (from 2005) Gilles gave ;)
    That said: of course there are ‘bad’ Cochrane Systematic Reviews, and there certainly remains room for improvement (especially choice of topics, translation to the public). Bias is less than in most other reviews, but it still exists. Furthermore, the evidence presented in SR’s can never be better than the evidence presented in the individual trials.

    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

  33. healthyjack says:

    RT @SusannahFox: Debate is breaking out on e-patients.net (including pushback on one of my #1 data points): http://bit.ly/37uO1U #fdaSM

  34. Susannah Fox says:

    Jacqueline,

    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!

  35. Thanks indeed, Jacqueline!

    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.

  36. Susannah Fox says:

    I want to point out that a parallel conversation is happening on The Health Care Blog, including some great insights from Josh Seidman, Bill Silberg, and others:

    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.

  37. Susannah,

    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 )

  38. Susannah Fox says:

    Gilles, you always see the glass half-full (HA!).

    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).

  39. Janet Wale says:

    People are still struggling with evidence or modern medicine – clinicians, patients, health consumers, carers and the public alike. Part of this is because we always thought medicine was based on quality research, or evidence. It is not only that. For evidence to be used most effectively in healthcare systems researchers, clinicians and ‘the existing or potential patients and carers’ have to communicate and resonate with each other – to share knowledge and responsibilities both in developing the evidence and in individual decision making. On the broader population level, this may include consultation but is best achieved by developing partnerships.

    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

  40. If you are an optimist and a builder is there any other than to see the glass-half-full? The moment the glass is full there is no more work to do!

    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.

  41. [...] Susannah Fox [@SusannahFox on Twitter] describes data on the quality measures of health information online. While three-quarters of health seekers don’t consistently check the source and data of online health information, only 6% of health sites reviewed even disclose information necessary to assess their quality. Susannah Fox petitions everyone providing insights at the FDA public hearing on Internet and social media: Tell the FDA the whole story, please. [...]

  42. ePatientDave says:

    *Phenomenal* comment discussion on @SusannahFox Sunday post "Tell the FDA the whole story please" http://is.gd/4T4in

  43. [...] A Patient’s Perspective on Day 2 of the FDA Public Hearing on Social Media Throughout the last two days, I’ve been far more concerned about what patients and those seeking health information online actually find than I have been about how many invisible adverse events can dance on the head of a pin (or rather, a needle). [...]

  44. Barbara Lavery says:

    First of all, I am President of a healthcare interactive agency engaged in both online DTC and DTP marketing – just to get that out of the way…

    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.

  45. Susannah Fox says:

    Barbara, thanks so much for your in-depth comment!

    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!

  46. [...] Tell the FDA the Whole Story, Please. [...]

  47. [...] Susannah Fox’s e-patient.net blog post about the impact of online medical information sets an important context. If one of the guiding principles for the medical community is to “first do no harm,” we should consider the data Susannah shared in her post: [...]

  48. [...] Tell the FDA the Whole Story, Please. [...]

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