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?
——-
Update: Roni Zeiger of Google Health emailed me and gave permission for me to post the following statement, which I think is a helpful addition to the conversation:
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.
THE central issue here is “Trust”. It’s central to whether patients will value Google’s search results; it’s also central to the company’s financial valuation — people would not use Google offerings if ultimately they didn’t have trust.
The jury is out on whether Google is trustworthy. Many question Google’s corporate philosophy which speaks to not doing evil. http://www.google.com/corporate/tenthings.html
Th trust issue cuts both ways. Good health-search results will contribute to Google’s perceived trustworthiness; bad results will fuel skeptics concerns.
Bottom line: I believe Google understands the importance of integrity in health search results, and that they can’t screw this up.
Susannah, you get a new gold star for the term “stocked fishing ponds.”
So, Vince, when you say “they can’t screw this up” do you mean “they couldn’t possibly screw it up” or “They better not screw it up – they can’t afford to”?
I agree that the trustworthiness of the algorithm is a big deal. Everyone with half a brain knows the internet contains biased garbage and you can’t trust everything you read; I really hope we don’t get to where a fundamental tenet of e-patient education is “Be careful about Google’s search results.”
Google’s approach to “not screwing up” seems to be foregoing real innovation and just kludging-in other peoples’ established brands (Mayo, etc.). We believe that one size doesn’t fit all in health search and have therefore established a number of consumer-facing health information sites that appeal to different demographics but all contain reliable and authoritative health information, plus the ability to customize it for one’s personal needs, easily share it with others and also build on the work others in the community have already done. These site include http://www.ResoundingHealth.com, http://www.CelebrityDiagnosis.com, ResForum.org and http://www.PhotoCalorie.com
It appears to me that Google’s approach to “not screwing up” is to forgo real innovation in the health space and instead borrow “trust” from kludging-in other peoples’ established “brands” (Mayo, etc.). Our view is that one size doesn’t fit all in medical and health search and it takes (to borrow an expression from clinical trials) a “stratified” approach that addresses different demographics and their individual needs.
Dave,
I’m not a fortune teller…I can’t/won’t predict whether Google will screw up.
That said, I’ll share a life lesson. Of all the classes I had in college, I discovered that microeconomics is the best predictor of human behavior, i.e., “follow the money”.
Google’s brand is build on trust — their entire brand (not just health search) is DEPENDENT on maintaining trust.
Ergo, their economic incentives to follow through and maintain consumer trust are VERY strong. At this point Google has my personal trust, but I think they’re smart enough to know that this could change in a heartbeat.
Again, Google seems to be borrowing the trustworthiness of others by giving preferences to established medical brands. There’s sometimes a fine line between a heuristic and a kludge.
One interesting element of Google Health’s OneBox is the need to enter the precise term that is indexed for the OneBox health sites. If one enters “High Blood Pressure Symptoms”, for instance, the OneBox results don’t appear. Same is true if one types in “high bloodpressure”, although the “did you mean ‘high blood pressure’ notice will appear.
Bing works a little differently and offers more related info for the complex as well as precise searches.
Also, I support Susannah’s comments about the utility of guiding searchers to local resources. At this point, the big search engines focus on the broadest topics and Mayo, ADAM, WebMD and MedlinePlus are good sources for basic info on diseases and conditions. But, the common complaint I hear about these resources is that they are too broad, not deep enough, too removed from the current needs of the patient, and certainly not geographically specific.
In short, online health resources are very fragmented –by region, by disease, by gender, by institution, by insurer, by type of content. With such a high degree of fragmentation, it’s difficult for the algorithms of the big search engines to provide meaningful results for many queries within the confines of a “onebox” search. For the present time, Google Health OneBox is fine for general info on diseases,and it’s good to see the steps being taken by Google, Microsoft and Yahoo to help guide users to trustworthy sites, but there remains lots of room for specialized health sites that can offer more customized information to users.
Janice,
Your point about how search engines focus on the broadest topics strikes home with me, particularly after spending yesterday with the Federal HIV/AIDS Web Council.
Miguel Gomez, director of AIDS.gov, spoke about how many people land on the site after a general search for HIV or AIDS, often because they had engaged in what they believe to be a risky practice the night before. He said that at first the site was geared toward connecting people with federal resources related to HIV/AIDS, such as housing assistance. After studying the traffic patterns, they retooled AIDS.gov to better serve this (very different) audience.
Is AIDS.gov the best resource for someone who wants to know if what they did last night put them at risk? Or someone newly diagnosed?
I go back to what we’ve observed in the past year in terms of social media & health: many people are going online to connect with someone like them, who can give them advice about what’s ahead on the path or give them the information they need to make a decision.
I’m really interested in understanding how health search fits in with all the other tools available. Thanks for adding your insights!
Susannah, great post, a few questions/comments
1) your post raises a fundamental question: does the Google algorithm weed out non-quality? i.e; if the principles don’t work in healthcare, are we sure they work elsewhere?
2)That said, prior to the One Health Box, the HON tool bar on Firefox already visualized the HON-certified sites — generally near the top. I find it useful
3) One Health Box is not visible outside the US. This instruction did not work for me “&gl=us”.
4) The atomization of search verticals leaves me skeptical about their economic viability, next to ubiquitous Google….unless they can get themselves purchased.
Denise,
Thanks so much for re-introducing me to the work being done by HON. Your comments (on Twitter, on your own blog, here) make me look forward to the Health 2.0 Paris conference – there is so much for me to learn from what’s happening in the EU.
As for the health verticals, I share your concern. Some are neat tools, but if nobody uses them, what impact can they have? And what prospects for survival?
This reinforces all of the reasons why healthcare providers need to get on board with social networking. Wouldn’t it be great to know we could connect with our own doctors as easily as Dr. Google?
Kelly,
Thanks so much for your comment. Lots of studies show that more communication with a care team is beneficial. I think the jury is still out on the value of social networking with doctors. This article made my hair curl: Skin Deep: Should Surgeons Meet Patients Online? http://bit.ly/5VRjxt
This is quite a pertinent topic in the research literature particularly from Lau and Coiera (http://bit.ly/6QiBLw) who are heavyweights in the area of cognitive bias in search engine results. However, we are still assuming individuals in isolation i.e. they are the ones searching and acting without any supportive network around them. Maybe the “debiasing strategies” suggested in the research is a synergy of human and computer interaction? What if Google displayed a message at the top of health results that simply said “Why not talk over this with your friend or a GP?” A simple nudge to try and affect human behaviour.
Mark,
I can always count on you to send me the best articles from the literature – thanks so much. And you’re right – health is social, people rarely deal with health questions on their own. Why not do more natural experiments to see how families handle a health decision together?
I like the idea of the “nudge” experiment — I wonder if Google or another search site would ever do it. Or would it seem too Big Brother-ish?
Fresh analysis from Ms. Fox, once again. Search still remains the on-ramp to eHealth, which is confirmed in Manhattan Research’s latest ePharma Consumer research (v9.0). And while not remotely brilliant, as the Beatles sang, it’s getting better all the time as some degree of Wisdom of Patients kicks in, depending on the “N.” “Going where the users are,” indeed! I like what Kelly says here: wouldn’t it be nice if we could connect with Dr-My-Own-Physician as readily as we could connect with Dr. Google. It remains the case, even with the prolieration of websites, that the most trusted channel for health information is…My Physician (source: Edelman Health Engagement Barometer). Keep those a-ha! moments coming!
One comment about Medline Plus (and I state this as an alumnus of the NLM) is that much of their content is in-licensed from commercial sources (e.g. ADAM, Patient Education Institute, etc.) and they’re more of an aggregator than an originator of health care info. So they’re playing a traditional librarian role of curating info and then putting their seal of approval on it. Personally, I’d like to see them be more innovative. This is an opportunity for medical libraries in general (and I state this as a current member of the Countway Library of Medicine at Harvard).
Susannah – One correction or clarification to your statement that Resounding Health is a “stocked pond.” The stocking is done by users who create casebooks and apply their own criteria and judgment to pages anywhere on the internet. So the “stocking” is actually a form of crowd-sourcing with all of the sites bookmarked by users being automatically organized by our medical ontology engine. A casebook is two things: 1) A place to collect, organize, personalize and store the results of Internet searches on health topics and 2) A custom “remix” and analysis of content from different online sources, automatically organized and integrated via the underlying ontology
DrB,
Thanks for the clarification. There *is* a big difference between an organization choosing a source list and one that allows users to curate the list.
I’d always thought of search results (esp. Google’s) as a gigantic crowd-sourced list. Once, when I needed some health info fast, I did two things at once: called an MD friend and punched in some search terms. The results came up on the screen just as my friend gave me slightly different advice. He laughed and said, “Who am I to argue with 100,000 hyperchondriacs?” He was teasing (knowing that I’d object to the slur) but he was also conceding the point.
There is an artificiality to the crowd-sourcing via Google, Bing, etc. because organizations can pay to be ranked at the top of the list regardless of whether or not “the crowd” has blessed them. This then becomes a self-fulfilling prophecy because orgs that pay to be at the top then get more traffic from the crowd. My favorite example of this is those ads that frequently appear on the Yahoo home page where spokesperson Hugh Downs advertises treatments and cures for serious disease that, in my opinion, are just snake oil.
Woah, Dr. B – organizations can pay to be ranked at the top of the list? Please tell me where I go to sign up for that.
I work in search engine marketing (SEM) at my day job, and believe me if we could do that, we would. (We do, via PPC, but that’s an open auction, not a back-room deal.)
My understanding, after years doing SEM and talking with others in the biz, is that one of the biggest search myths is “Companies can make secret deals with Google to get a high ranking.” We’re approached every year or two by some “black-hat” (scuzzy) SEM consultant pitching that concept. If you have any evidence at all that such deals are true, please share.
Dave is right that paid search may get you a top level sponsored ad, but not a top-level organic listing. But Susannah points out an exception to this rule when health terms are entered. So, yes, some sites are more equal than others and Google has chosen Mayo, WebMD, MedlinePlus and ADAM as deserving of special placement. Some kind of direct deal was concluded with these partners, although I don’t know the terms. Note, ADAM was an early partner with Google Health.
I’m excited to see health content the focus of this discussion and agree with others who have made the point that the current array of health sources are extremely fragmented (and consolidation is likely to continue to occur) and that user needs are also stratified. There’s no one answer or obvious starting point for the variety of health information queries that searchers have. More structure, aggregation, and navigation paths to guide users to trustworthy sites would add value to the search experience and I expect to see continued progress in that direction. The big question is how much of a role in content curation the big search engines will take on in verticals like health care.
At first blush, many people don’t “get” what Google is doing in health care.
However, I believe that health and health search is highly related to Google’s core business. Google’s mission is to organize the world’s information and make it universally accessible and useful.
I’ve written more about this on my own blog at http://e-caremanagement.com/microsoft-healthvault-is-a-serious-business-strategy-will-google-health-become-more-than-hobby/
I wish there was one site that all “health users” could access to begin their work. Not Google, Bing, or any other search engine. An independent site that works to compile and autheticate the information for the “health user.” I know this is wishful thinking, but I love to dream!
Stales – this is not a dream but precisely what we’ve built at Resounding Health. Information is compiled in casebooks created by individuals who include bookmarks to sites they’ve found valuable (and why). Over time, the information is authenticated by crowd-sourcing and repeated use. I’m planning to submit a paper on this to the Journal of Participatory Medicine but I am happy to send you more info now if you contact me at drb resoundinghealth com
Thanks for continuing to shed light on this ever-morphing topic, Susannah. While Google isn’t nearly the perfect tool for health search, health search continues to be the prevailing online channel for how health citizens access health information, and Google is the go-to vehicle for that activity. As the Beatles said, it’s getting better all the time, even though none of us commenting here on e-Patients.net believes it’s anywhere close to excellent. Still, health citizens do gain knowledge and empowerment even through imperfect seach, and we’re on a journey, not a sprint.
I like what Kelly said in her first comment here: “Wouldn’t it be great to know we could connect with our own doctors as easily as Dr. Google?” The fact of the matter here is that, even more trusted that websites for health information is…the doctor (Source: Edelman Health Barometer, v.1). So getting doctors to consult with patients on what they found via Google, or elsewhere, must be part of informing the Participatory Medicine/Health process.
Apologies to Jane who tried to post a comment twice yesterday and was thwarted both times by our spam filter. I approved both, not just b/c it means two more compliments for me (always nice to hear) but b/c she makes different points in each.
Thanks, Jane!
Very interesting post and comments thus far. I particularly liked the point by Mark. It prompted me to think about the isolation vs social aspect from a different direction as it relates to another Hitwise inspired post titled – Why is Google Afraid of Facebook? Because Social Networking Could Soon Pass Search (http://bit.ly/4tkh7O). Hitwise reported that ”social networking sites have surpassed the traffic search engines receive“ for the first time. This finding was admittedly in light of the following circumstances: 1) it was during Christmastime, 2) it was only for user activity in Australia, and 3) YouTube was included in ‘social networks and forums’.
However, that inversion may also serve as a precursor for more consumer health-related searches being initiated in or mediated by social media sites. And, rather than minimizing the role of YouTube because of its questionable classification as ‘social networking’, I think it may actually provide some perspective about the increased use of video by consumers for health information that Jane posted about (http://bit.ly/uS4fe) from the new ePharma report.
I haven’t completely wrapped my head around all these variables yet, but this landscape changes so rapidly that I think it merits a much closer look.
I can’t compete with WebMD or the Mayo Clinic, yet I would argue that the amount of resources I offer about my particular health issue (perinatal mood and anxiety disorders) beats their sites hands down. So what frustrates me about the way Google works is that consumers are often led to only the most high-level information about their health conditions. If they want to dig further, they’re going to have to scroll down page after page to get to patient blogs and “disease-specific” sites that are often much more comprehensive about those conditions. Bigger is not always necessarily better.
Katherine, in the long run, I think there’s a strong business case for bigger is better.
Search is destined to become much more highly personalized, i.e., search results will be delivered to you based on your personal profile, including demographics, psychographics, financial status, medical and genomic information, etc.
I understand that today many people might think of personalized search as being closer to “creepy” than valuable. That’s why Google and Microsoft aren’t yet doing it….however, Aetna has already begun to incorporate person specific health search results.
In the long run, the value of personalized search information will outweigh privacy concerns.
Personalized search is much more likely to be the domain of very large companies like Google, Microsoft, and a perhaps a few others.
“Too big to fail?” We know how that’s working out for the banking industry and General Motors.
Vince – don’t you think that if we “feed” people to much information in anticipation of there needs (according to someones formula), you’re really creating a bizarre form of information censorship?
e.g. Big brother not only knows everything, but tells you what it thinks you should know.
DarthMed,
Agreed.
There’s a lot in the literature and ongoing research about your valid point of dumping info on people when they aren’t interested or prepared to do anything with that info. Some of the keywords here are “teachable moment” or “stages of change” (i.e., aligning the process of providing info with patient’s readiness/need for info”).
Let’s break this into pieces:
* the increaing availability and quality of personalized health search information (supply)
* an epatient’s readiness to do something with that information (demand)
The problem with health care and medical diagnosis and information is that to a large extent one finds what one knows. Specialists usually decide that their specialty will solve the problem. Patients usually decide they have what they are most familiar with. It is often quantity not quality. Internet search methodologies just increase these tendencies.
Hi Susannah,
Great post! With the exponentially increasing number of websites and amount of data out there, I think it actually makes sense for Google to refer patients to trusted sources first.
Personally, I always make sure to check multiple sources of information when I have a health question – first Wikipedia and PubMed, then Google. I put together a composite version based on bits and pieces from sources I trust, and of course I check CureTogether for wisdom from the patient crowd. 🙂 This approach works well for me (often better than going to a doctor, to be honest, so I reserve this effort/expense for when I need to request a medical test or check my logic).
It’s true that smaller websites have to work harder than ever now to get attention online, but I think that’s reasonable, inevitable, and ultimately beneficial to patients.
Thanks for bringing up this topic!
Alexandra Carmichael
Co-Founder, CureTogether
Alexandra,
When searching for information online I follow a method similar to your own. It works for me. I also search for relevant, reliable, accurate information for SharingStrength.
SharingStrength’s mandate is to provide a library of resources and an online community tailored to Canadian women with breast cancer. Our site claims to ‘cut through the noise’ and help women find and ‘create’ resources that are particular to Canadian women using the Canadian healthcare system. This is a lovely, perhaps lofty, mission, but I think it remains worthy. We have to work very hard to get noticed online in French and English.
Colleen
Editor of SharingStrength | FortesEnsemble
Katherine Stone has it exactly right. It doesn’t matter what an individual consumer might do for *their* particular health search. What matters is what the vast majority of individuals do — individuals who are not suddenly going to go use a vertical search engine just because it may be better or someone mentions it to them. Google is King of search right now and, in that role, they have a responsibility to honor the playing field they largely set.
When they altogether bypass their own algorithms in order to highlight results they’ve partnered with another company for (which is what Google Health results are), they are completely altering the health content landscape. Especially at the expense of smaller bloggers and vertical health sites like my own (Psych Central).
WebMD and ADAM content may be fine (for what it is — usually a mile wide and an inch deep), but it certainly can’t compete with Katherine Stone’s postpartum information or my information on mental disorders like depression.
And neither one of us can compete against the large corporate dealmakers at Google and ADAM.
This behavior sets a dangerous precedent. If Google wants to get into your content area, they’ll feel free to do so and then ensure their content’s link appears above yours, no matter what.
Bob Coffield just tweeted a link to this NYTimes post:
A Is for Amazon, B Is for Best Buy…
http://bits.blogs.nytimes.com/2010/01/25/a-is-for-amazon-b-is-for-best-buy/
I don’t have time to test it to see if health sites come up in any of the suggestions – please post back if you see something interesting.
Quick, disjointed note here….
Google is experimenting with this: Experimental lab
I’ve been using for quite some time. I’m not sure if you can still sign up for it. I love being able to comment, show preference for a site, and “X” a site. I have to be signed in to do this, and I’m not sure how much influence it has overall, but I see searches tailored more for me as a result. (Interestingly, this does not work on scholar.google.com)
Also, sidewikis could become valuable if everyone used them. I try to take the time to comment if I have strong feelings about a site.
Another possibility: Groups (medical or otherwise) can develop a custom search engine. Google walks developers through doing this, and it’s relatively simple.
But at the end of the day, let me say that I’m tired of being treated (as a patient) like I can’t figure out there is “bologna” on the internet. And guidance from my (very misguided) physicians is what got me into my personal health mess in the first place. With great support groups (like cushings-help.com for me and ACOR for Dave, etc.), even the most illiterate can get super support, great information, and superior guidance to quality information. I see it every day on the CH site.
Tweeted you recent data from Harris, but it supports your trend statement…
Harris info for 2007 (reported 2008) and 2008 (reported 2009). I assume the 2009 data will be reported sometime in the next few months.
Interestingly, the Harris Poll reports are the only place I’ve seen the term “cyberchondriac” used in a positive way. Most of the time (media-wise), it’s used with negative connotations.
Thanks, Robin! It’s great to have those citations listed here.
I think Harris Interactive is one of the foremost authorities on technology’s role in health care. I refer to their work weekly. However, the term “cyberchondriac” has run its course. Even if they didn’t mean it to be pejorative, the term has gotten away from them.
An outdated term can be distracting in a conversation about important issues. Just ask Harry Reid or the Census Bureau: http://census.pewsocialtrends.org/2010/racial-labeling-in-survey-questions
Susannah, as always, it is great to discuss with you. I learn a lot, and I agree it’s outdated and misconstrued. I hope (think) the Harris polls tried to make it a more positive term. It didn’t work. Thank you for all you do.
I learn as much from the conversation here (and on Twitter) as I do from the literature, so thanks right back at you!
That’s true that the sites aren’t paying Google… Google is paying ADAM for the privilege of licensing its content and rebranding it as “Google Health” content. ADAM, btw, is a commercial entity, so ADAM is getting a great deal more from this arrangement than simply a licensing fee.
However, the second part — “Google is 100% committed to ranking websites objectively to provide the most relevant information to users” — is simply untrue given the Health OneBox. The “most relevant information to users” is what Google’s algorithm says it is.
Why would you go around that algorithm for this one topic area, unless you wanted to feature someone else’s content? And when you want to feature someone else’s content, that’s the very definition of subjectivity. Someone is making an editorial decision. That’s fine, but that’s not the same objectivity as the Google search algorithm.
I don’t fault Google for doing what they’re doing, since it only makes sense that the more Google can keep you on Google.com, the better it is for them in the long-run. I do fault them for being less than transparent in the fact that all of this is commercially driven by their own self-interests and their business partnerships.
Isnt all this discussion moot in an environment where VERY few people are using technology like Google Health at all. Irrespective of how perfect, or imperfect these tools are, we get down to following very simple issue:
1) Educated, self-informing folks (e.g. the underwhelming number of folks that have joined Google Health or PatientsLikeMe) never trusted what their doctor told them verbatim, always did research (yes, even before the web), tracked their weight and calories without an iPhone, and critically reviewed what they read. They dont have, and never did have an issue. All we’re doing here is replacing one tool for another.
2) THe remaining 95% of “patients” out there are not motivated to become informed, or invest the time/energy/money in using any of these tools. These are the folks that know that fast food isnt healthy, but are just too tired to choose differently. Some (emphasis on some) will do a standard google search when they receive a new diagnosis at best. Yet these are the folks – often folks with multiple chronic (often preventable) health problems, many overweight, on multiple medications, sometimes social problems – that have the real issue that needs fixing.
So we can all sit and perfect the tools for a few folks that never needed them anyway, or we can recognize that the kinds of solutions required for healthcare in the US today have nothing to do with fancy IT, or prioritization on search engines, and everything to do with low-tech, unsexy approaches toward grass-roots public health. Sorry to be the voice of reality guys.
I have a lot of sympathy with Darthmed’s point of view, and I don’t think thathis post shows a lack of empathy at all.
I work in a deprived area, where many patients have very limited access. For that reason digital inclusion projects interest me. Our health, and our life expectancy, are closely related to our income and our education. In part this is because education and income determine lifestyle choices- structurally (what you can afford), and also socially (the norms of your peers). What is the best way to remedy this inequality in health?
The increased move to talk of ‘personalised health’ makes me worry that a belief in social justice and some public health activities will start to be seen as even less sexy.
I’ve written some more here http://empowered-patient.blogspot.com/2009/11/why-we-need-empowered-patients-gp.html
It’s a great discussion with many worthy perspectives articulated well.
Hi Anne-Marie – so good to see you here.
I confess that I’m baffled about how anything we’ve discussed here would conflict in any way with social justice. What am I missing? Forgive me if it’s obvious – nothing could be farther from he heart personally.
You’re completely right that my post seems out of context in the midst of the wider discussion. I will write and explain more another time but I did read youre reply:)
I had so much to say that I wrote a new post:
What’s the point of Health 2.0?
http://e-patients.net/archives/2010/01/whats-the-point-of-health-2-0.html
DarthMed,
Heck no it’s not moot, in my view anyway.
For one thing, Susannah was talking about the search results Google displays, which has nothing to do with whether someone’s a user of Google Health etc.
For another, it’s not valid to look at pre-need behavior and draw conclusions about what people will do when the stuff hits the fan. My interest in kidney cancer ramped from 0 to infinity in a couple of days. Same as how my interest in travel to Paris ramped up when I got a business trip there ten years ago, and my interest in my Toyota’s floormat ramped up recently.
In my view it’s a matter of what resources people can draw on when the need arises.
Unfortunately your premise that folks will embrace the tools when the stuff hits the fan is whats getting us into trouble. Hitting the patient with information (even if they change their behavior in response to it) after a critical diagnosis is too late.
The reality is that no amount of patient engagement or ‘e-participation’ after the fact will come close to preventing the problem in the first place.
For example, getting a family to decrease their fast food intake by one meal a week will have more impact on quality of life and longevity for adults + children than any amount of good they could do becoming a “e-patients” after the mother has her first heart attack.
Similarly, getting a women screened for breast cancer by driving a screening bus to welfare centers will save more lives than transforming a breast cancer victim into an effective e-Patient.
Getting people to stop smoking has had far more impact on lung cancer rates than providing them with lists of chemotherapy options.
As the ultimate case in point, Bill Gates – who should have more faith in IT than any of us – has chosen to put his $10 billion into simple vaccination programs versus ‘health IT’. After almost 20 years trying to watch this space kick-start itself, I’m beginning to think he’s right – and that it should be into simple public health that our resources and attentions ought to go.
DarthMed,
You certainly picked your name correctly.
From a purely intellectual POV, there’s really not much inconsistency in what you and Dave are saying.
From a human sensitivity POV, you fail. Try a little empathy.
DarthMed, I think you leave out something important. One doesn’t have to have a “serious illness” (subjective term) to be a patient. Recently, my older daughter (who lives a very healthy lifestyle), had a lot of shoulder/back pain. After ongoing “treatment”, one doctor’s “fellow” realized she had a shoulder injury and ordered scans/tests. Sure enough, he was right. His supervising physician refused to treat her and said PT was enough. She had been doing PT.
She saw another highly recommended doctor NOT COVERED by her insurance. He agreed with the fellow. He needed her old records and scans. She had a heck of a time getting them. She also needed both doctors to communicate. Former refused. Latter then contacted another doctor in-network with her insurance and with whom he COULD communicate. This last doctor worked at same facility as first doctor. World of difference between the two, however.
Bottom line: She needed more information, and she needed her records. She needed communication. She became an e-patient post haste. What does she do for a living? She’s in Health IT. Ha! Being an “IT” or technology guru isn’t wnat makes one an e-Patient. Being empowered does. We all need to be empowered. We also all need to realize that being a patient doesn’t always constitute major illnesses. But it does mean we need to do what is best for US. So, whether 95% choose to become technology savvy is moot. Whether they have the option to be empowered is not. And that’s the difference.
DarthMed,
I don’t disagree with your assertions about prevention and behaviour modification, especially for populations who may be less likely to turn to the Internet. However, this does not preclude the task of looking for a good search mechanism to use with our current research tools. That would be like saying the dewey decimal system should have never been introduced to libraries.
E-patients are not only born out of crisis — just ask any new mother.
Colleen
Robin – I agree. Patients should have the right to be informed although I dont think many will take it up (look how many people turn out to vote, let alone really research the issues!)
Why not simply mandate that patients have the right to receive a copy of their medical record… period. Its the hospital/clinic’s problem to work out how to deliver it. On day 1, it’ll probably be as photocopies. If enough folks request it, they’ll pay to upgrade their IT infrastructure so they can print DVDs.
Would you rather (a) have some simple legislation passed, followed by the ability to get your medical records tomorrow… (b) wait for a nationally integrated health information superhighway.
I agree, the two arent mutually exclusive. But with SO much effort and passion going into (b), arent we completely missing (a)?
DarthMed,
Interestingly, this week in DC, while making some spontaneous visits to my legislators’ offices on Capitol Hill, I realized the same thing: we could do a whole lot of good fast by doing exactly what you suggest – make it possible to get our records right away.
HIPAA mandates that now, but they can take 30-60 days, which is stupidly useless in a crisis. Why not allow people to show up at a medical records office and ask for their records while-you-wait?
You’re spot on. I love it.
Add to it the right to sue in the event that information was not provided promptly that could hve saved you harm… and I guarantee every doc/clinic in the US will be adopting healthcare technology whether there is a stimulus grant or not!
fyi, the recently released HITECH rules/regs have a handful of very specific measures requiring doctors and hospitals to provide patients with electronic copies of portions of medical record info.
The approach is phased — more info must be provided as time passes, starting with an electronic patient summary record and access to test results within 48-96 hours.
Dave and I are working on an essay describing these rules/regs and disusssing implications.
Agreed…simply providing patients with electronic copies of records will be very powerful and disruptive.
I hope Google and other search result pages divided into two section. First, it shows recommended links based on special algorithms, trust, or authorithy levels for nonprofit, education and government sites. Such as Universities, dot govs, AskDrWiki, Ganfyd, Medpedia, Wikipedia, etc. The rest, natural algorithm as usual.
I think what is being revealed by Google is that:
1. Consumers do not know how to effectively search for health online (watch how a doctor would search using Google, the terminology, etc. vs. a layman)
2. Google does not know how to effectively return trusted, valuable health results given the landscape of information combined with fact #1 from above.
So, given that 75% of health users start at Google the only way for Google to be helpful to these folks is to essentially “cheat” its own system. What Google is essentially telling its audience, in my opinion, is “choose from one of the 4 sites we show you because if you dont you will be cast into the abyss—and good luck doing that…”
There are a number of much more effective ways to meet consumers needs in health. I am working with companies daily who are doing so, in real time, with great success.
One simple observation: this conversation is completely US centric. Doing health searches, at least in Europe, doesn’t bring up the OneBox and therefore the entire conversation is currently moot. So much of the conclusions made by us are VERY specific to localisation.
It’s important to remember that we can easily forget that our village, even if it’s a cybervillage, is very different from the villages across the various ponds.
Gilles, I think it’s even more localized than that. On Susannah’s sequel to this, one of my comments included
Sure, Robin!
And people develop a way to interact with the medical professionals based on the strength and weaknesses of each system. That’s why ACOR has some lists that are country specific (UK and Canada. The French couldn’t deal with the high level info; they left!).
Been a while since I’ve commented on here, but I had to return to harp on the same old topic.
I work in healthcare IT, and the degree to which people on this blog assume that data is easily or consistently available is shocking to me.
For example, the institution that I work at has FOUR electronic medical record systems, none of which has ambulatory functions. Many docs are still on paper records, and none of the existing EMRs interface to one another. Two of them cost over USD$40m for 5-10 year contracts. This scenario is not atypical for private hospitals in the united states.
How does this bear problems presenting a united health picture? I’ll give one example. If a patient needs to get chemo, the ordering of the drug happens from the in-patient EMR, but then the consent to perform chemo is obtained, and then re-scanned back into the out-patient EMR.
Another thing to consider is that most (if not all) commercial EMR packages are NOT NOT NOT designed to show a holistic view of health to doctors OR patients. The primary purpose of most of these systems is to capture sufficiently accurate and granular diagnosis and procedural data to be able to accurately bill insurance companies for professional services rendered to the patient. Many of these systems use norton-commander like interfaces (folders on the left, top nav area, “content” in the middle) which is designed to display forms and documents, many of which are in PDF or otherwise non-easily-linearized formats. Most systems capture doctors notes in free-text (because that’s what doctors want!) which is flexible, but notoriously hard to understand unless you’re the one who wrote it.
With what we think of as “our data” or “my medical record” spread across multiple systems, and stored in a non-intuitive fashion, I still think the e-patient concept is putting the cart before the horse. We should really be focusing on data standards and laws that force the private companies that make EMRs to adhere to them. Unless all this data is even capable of being aggregated and viewed in a manner consistent from encounter to encounter and from institution to institution, then we’re foiled before we’ve even begun the discussion.
Hi, Ben. I have a daughter who has a job that is probably much like yours. She tells me similar stories. She knows both the HIT side and the patient side, which leads to many discussions between the two of us.
Most of us are familiar with the “paperless” system which is not paperless. We also realize (ask e-Patient Dave DeBronkart)how the data stored is not what is “real” for the patient.
There is a group who is working on figuring this out. Actually, there are probably multiple groups. But do you really think those data standards/laws will happen unless we (patients/e-patients) keep demanding our data? Something has to drive this. And it’s not going to happen unless we demand it happens.
What do you think will work to get these standards and laws? How do we do that?
BTW, interesting article: Consumers Not Ready for Do-It-Yourself PHRs, Experts Say.
Ben,
it looks like you are confused about what an e-patient is. You seem to associate e-patient with the need to have access to electronic data. Nothing could be further from our original work, more than 10 years ago. The original definition was (and remains) much simpler: “e-Patients (also known as Internet Patient, or Internet-savvy Patient) are health consumers who use the Internet to gather information about a medical condition of particular interest to them”.
Yes, maybe/probably, patient empowerment could significantly benefit from each one of us having easy and constant access to our computable health data. But it is absolutely NOT a requisite and it is not proven either. Some of us have not yet drank any cooler and do not intend to start anytime soon.
But what I clearly know is that e-patients, particularly those suffering from unusual medical problems, can dramatically impact the quality of care they receive by simply communicating with others. This is particularly true if they are lucky enough to find a community with active expert patients. That is why ACOR‘s new motto is: “Connections, not computations“.
Ben,
it looks like you are confused about what an e-patient is. You seem to associate e-patient with the need to have access to electronic data. Nothing could be further from our original work, more than 10 years ago. The original definition was (and remains) much simpler: “e-Patients (also known as Internet Patient, or Internet-savvy Patient) are health consumers who use the Internet to gather information about a medical condition of particular interest to them”.
Yes, maybe/probably, patient empowerment could significantly benefit from each one of us having easy and constant access to our computable health data. But it is absolutely NOT a requisite and in all fairness, the depth of the real impact, beyond creating new buzzwords and massive expectations, is unknown. Remember, some of us have not yet drank any cool-aid and do not intend to start anytime soon.
What I clearly know is that e-patients, particularly those suffering from unusual medical problems, can dramatically impact the quality of care they receive by simply communicating with others. This is particularly true if they are lucky enough to find a community with active expert patients. That is why ACOR‘s new motto is: “Connections, not computations“.
I also know that any data generated from my body belongs to me and that a cultural and legal paradigm shift MUST take place to set this universal right in stone. Only then will we be able to really assess scientifically the impact of untethered PHRs.
Gilles, I hope you’re not intending to exclude Ben’s POV from the meaning of e-patient and/or ACOR’s motto.
Ben, perhaps you go too far tho when you say “UNLESS all this data is even capable of being aggregated and viewed in a manner consistent from encounter…” [emphasis added]
There’s an easy synthesis here: Working toward computable, standardized data is a strong leverage point for e-patients, even tho it’s not a prerequisite.
“What do you think will work to get these standards and laws? How do we do that?”
I wish I had an answer. Maybe we should start by looking at countries that have already successfully implemented such systems ([ahem] universal healthcare [ahem]).
“e-Patients (also known as Internet Patient, or Internet-savvy Patient) are health consumers who use the Internet to gather information about a medical condition of particular interest to them”
I would posit that being an e-patient requires first knowledge of information in your own medical record. Beyond a simple diagnosis from your doctor, how will you be able to for example research your genetic or epigenetic profile unless you have access to the data first? 🙂
“There’s an easy synthesis here: Working toward computable, standardized data is a strong leverage point for e-patients, even tho it’s not a prerequisite.”
I wholeheartedly agree. However doing this is EXTREMELY difficult. The National Cancer Institute has been attempting since 2005 or so to come up with a universal data dictionary for variables necessary for cancer clinical research:
https://cdebrowser.nci.nih.gov/CDEBrowser/
Which contains 10 different variables for weight, and a hundred different dates (eg: breast diagnosis date, prostate diagnosis date etc). It is SHOCKINGLY difficult to get people to even agree on shared nomenclature in the medical world which is why there is so much research done on medical ontologies, eg:
http://en.wikipedia.org/wiki/SNOMED_CT
Ben, of course you need your medical record and you need it fully and instantly. That’s a given.
My whole point is that having access to that record will not automatically transform most people into Regina Holliday! All the exceptional e-patients I have seen are exceptional people to start with. Access to data is not what has made them understood that their survival depended on taking charge of their medical care.
You also wrote “how will you be able to for example research your genetic or epigenetic profile unless you have access to the data first?” Interesting question, but with VERY little impact today. The NIH doesn’t even have the first version of a general data dictionary for genetic data. It will be at least 2 years before the medical association who has contracted to build this data dictionary produces its first draft!
In fact, Vince, I am becoming a radical against the new religion of health data as the solution to all/most healthcare problems. I think there is an immense risk of presenting some of our wishes as reality.
If you want to see my entire definition of e-patient, you should visit wikipedia. If people want to change the meaning of the term they should spend some time refining that definition.
As for ACOR motto, it is indeed limiting. ACOR has done all the good it has done for 14 years WITHOUT any form of structured data. It is time to say it loudly. Medicine is about people, not about computers. By design, ACOR is still using very simple technology. There is a reason why Tom Ferguson and myself both had houses in the mecqua of minimalist art! We both loved the luxury of simplicity.
Your synthesis is sounding great. Really! I support it, just as I was a member of the original who crafted the declaration at Healthdatarights.org. But at this point in time we do not have any data to prove that giving individual access to computable health data will radically change any health outcome, do we? Hopefully, very soon we will be able to fund real research and we will help to generate real science about the true impact of patient engagement in their care and about what tools work and which don’t. Until then, we can imagine and invent as much as we can. But I will be very careful not to make claims that could prove erroneous sooner than later.
Gilles, just out of curiosity, do you consider me a “priest” of this “new religion of health data as the solution to all/most healthcare problems”?
If not, what are you talking about? You read a lot more than I do but I don’t recall hearing anyone suggest that.
Dave, I think new “religions” can exist for a while without having organized priests and frankly, I am not interested in transforming a serious discussion into name dropping. Supporters just need to share a strong, common, unprovable belief. I am clearly seeing the birth of a new order that shows signs that I find troubling.
The lack of critical analysis is definitely my main problem. On this I am much more radical than “DarthMed”. We do not have the evidence that can help us support many of the ideas I have seen promoted on Twitter as facts. Evidence building should be our first order of business and that is why the idea of the Journal of Participatory Medicine is so important.
ACOR was built to promote science and when I proposed the term Participatory Medicine at the Cooks Branch meeting of 2008 I said then, and will repeat here today, that none of what ACOR has been promoting since 1995 (pure patient empowerment by gaining unlimited access to science and other patients) will ever become part of mainstream medicine unless we have scientific data to prove the benefits of patient empowerment.
We have been fighting the good fight to gain access to our health data because it is immoral to have what belongs to us held in remote silos owned by people who have been using this situation as a way to maintain control of the system.
But besides that I still say that until proven otherwise, patient conversations, compared to data silos, have been more effective at surfacing unknown medical issues. The value of the patient narratives has been vastly underestimated since Web 2.0 has transformed the Internet. It is easy to understand why. We do not have yet the tools to push semantic analysis to the level necessary to transform human conversations into computable data. In fact I think that the great hidden benefit of human conversations is that they can never be fully summarized, analyzed and assessed by computers. That was my message at the NIH workshop on rare diseases a month ago. And many of the participants approved.
Well Gilles, if you assert that you clearly see the birth of something that you’re unwilling to identify, then you put me in the position of wrestling with a ghost, and I reject your argument.
And answering “What are you talking about” has nothing to do with name dropping.
I don’t get it about the data thing. You were part of the secret group that developed the Health Data Rights website (extremely rapidly), and then urged me to sign, which I gladly did. So who ARE you talking about?
Here I am, an avid ACOR promoter (it was in my Philadelphia speech yesterday, and I just raved again tonight in another media interview), so I’m clearly not anti-ACOR. And I didn’t even mention health data in either event. I just have no idea what you’re talking about.
So either give me something to ponder or I’ll just walk away shaking my head in wonderment.
Gilles, A study in the British Medical Journal a few years ago pointed out that there have been no randomized control trials of parachute effectiveness. http://bit.ly/bpdncE
That said, most people take it on faith that a parachute is a good idea when skydiving. I’m willing to take on faith that better data for patients will lead to better outcomes.
Think about it from another angle, though. By definition, ePatients have to make judgements and assumptions about their own conditions. Those judgements and assumptions are based on observational data (“I think I have a fever…). Why not empower patients with real data?
I think the ePatient movement will be stronger if it embraces the integral value of patient data.
That said, I want to be respectful…you have far more ownership and history with the movement than I do… but times change.
I think it is important to be clear: I have no ownership of anything related to these discussions. Either the concept has a wide impact and no one owns it or it is a boutique concept and then a few individuals own it. I am only interested in participatory medicine if it is a clear example of the first type. As far as I am concerned, the patients, past, present and future own the movement. As I have repeatedly said over the last year, none of the conversations are about specific individuals. They are about the transformation of the medical system.
I don’t remember writing or saying that patients access to ANY information should be limited. It’s pretty obvious you don’t know me! My world is centered around online communities where the health professionals are a nice addition but not a necessity, because patients have found ways to get unlimited access to the latest information about their disease. ACOR was designed from day 1 as a system where no limit could ever be put about the transmission of scientific information.
Times change, indeed. It doesn’t mean that you’ll see me running at breathtaking speed ahead just because some thinks look cool. I do believe that many of the most active tweeps are clearly putting the cart before … Data is NOTHING if the data recipients don’t have the means to make an informed choice based on the data elements. I believe that, for the foreseeable future and as a matter of public health, the lack of health & digital literacy and the unfortunate submissive attitude of a majority of patients are going to be much bigger impediments to patient empowerment than the lack of direct patient access to their health data.
I like your parachute effectiveness parable. You don’t need a randomized trial about parachute effectiveness to figure out the outcome if the majority of parachute users haven’t read or be told anything about how to use a parachute and are just pushed out of a plane.
I believe that in the last 15 years I have seen many, many more examples of the unlimited power of the expert patients than most people can imagine. When I write unlimited power, that’s truly what I believe. In some cases, it is pretty obvious that the real experts are the patients and that health professionals are here only as consultants, not as drivers of the care process. And in almost all these cases it is the amazing knowledge accumulated by these patients that has kept them alive. It’s not access to a computable version of their health record, who can only be a subset of what the patient needs to make a informed decision.
Gilles, Thanks for the thoughtful discussion. I think we’ve both had opportunity to present our POV.
You’ve caused me to reexamine some of my basic assumptions. Ultimately I can’t “prove” my belief that simply providing patients with data will be transformational and disruptive.
I do walk away with a deepened respect of your POV about the value of a more simple view explaining the success of ePatients.
Ok – I cant sit on this one any longer … even if Gilles refuses to read my comment on principle 🙂 …
I was asked on a question a few weeks ago that I had no easy answer for, and it rocked the foundation of my pre-existing ideas on the “e-patient” initiative.
Please follow / critique my logic:
A. The internet provides Americans with faster access to a larger pool of information / knowledge than they had 10 years ago.
B. According to (Pew Internet or CDISC – someone that published in the last week, anyway), more than 51% of Americans used the internet to look up health information.
So, why are all our health metrics getting worse or – at best – staying the same in chronic disease areas that may folks claims can be improved through better patient education and “empowerment” – e.g. obesity, depression, anxiety, diabetes, atherosclerosis.
In my mind, this challenges the premise that a more informed patients results in dramatically altered long term health outcomes – and I’d like to see some statistics if anyone has some available – that can prove the contrary to this. (No, I’m not talking about 3 month weight loss studies, but rather what happens to them 12, 24 months on etc.)
Until I can see some convincing data, swapping ‘internet Health’ for a magical supplement leaves us with the following analogy:
Supplement A, launched 10 years ago, is now used y 51% of all people … During this period, the health outcomes in this population have remained unchanged at best, and in most cases have continued to deteriorate. Confronted with this reality check, how strongly would you support making Supplement A available at higher doses to a larger group of people?
WOW! I made it! WP considered this to be SPAM and didn’t publish it when I wrote it 2 days ago.
DarthMed, it’s not that I refuse to read your comments. It’s just that we would have a much better conversation if it was clear if all your comments regarding public health issues are based on a deep knowledge of the field or based on the equivalent of hearsay.
I like this last comment because it confirmed my deep suspicion. Like many people you are making the tragic mistake of looking at medicine in a linear fashion, while we have learned very clearly that the world of algorithmic medicine has very little in common with the long tail of medicine. You are constantly referring to the world of chronic diseases and chronic issues and for most of these it seems pretty clear that the internet has not changed dramatically the situation over the last 5,000 days.
But you should pay close attention to what all the people living in the long tail of medicine have created to solve their problems. For these people, the transformation has been dramatic and for many the outcome have changed so dramatically that you can absolutely speak of a revolution.
Does it mean that anything created for the long tail of medicine is automatically applicable to the large chronic disease world? Absolutely not! I would be the last to say it. ACOR fixes real medical problems, where very few experts are able to provide an appropriate answer to most patients. ACOR helps people and often keeps them alive because it fully circumvent the limitation of the medical system and let individual know of life-saving treatments that are hard to find. That is the reality of what has happened to over 600,000 people since we started. It’s a lot more than just anecdotal evidence at this point.
I believe that most of the problems you have mentioned a few times are cultural issues and not healthcare issues. As long as America will refuse to face the cultural issues it has with food we will see an ever larger population of individuals facing obesity, high blood pressure, diabetes and other chronic conditions. Walking in European capitals for a few days will drive that point better than any long term study:-) Supplement A, B or C will not replace a necessary change in the real understanding of what food is and how it relates to a healthy society, at many levels. The industrialization of a natural process, associated with a pathological lack of control of portion sizes has resulted in a real national tragedy. Pills won’t fix it.
Well, Darth, I don’t know the formal name for the logical fallacy that I detect in your logic, but here it is:
The existence of a new influence (supplement, info resource, pickup truck, etc) doesn’t mean it’s being used, used properly, or used to its potential.
Reality is, no matter how much information is out there, if people aren’t actively engaged and USING the information, it makes no difference.
I believe this is why the definition of participatory medicine says it “requires active involvement.” “Read Only” = fail.
I’m sure someone has a sharper observation, but that’s my start.
Is there scientific data to prove this remark?
Secondly, those aren’t nearly ALL of the chronic/disease areas. Nor are just chronic diseases the need for patient empowerment/education.
Thirdly, as all Cushing’s Help folks know after they are on the boards long enough to learn, all of those “metrics” you mentioned above are symptoms of Cushing’s Disease.
On top of that, many illnesses, often devastating with high mortality/morbidity are not chronic. What about those?
Patient groups are knowledgeable. I know that from the time I joined my support group to now, the time between awareness of possible Cushing’s to appropriate testing is much, much, much shorter than when I started. And I got the appropriate testing in a much shorter time than those before me. Why? Because of my support organization. Not only was the time before appropriate testing shortened, but teh duration of it also. So diagnosis comes more quickly, and thus treatment comes more quickly. Add to that the plethora of shared information about surgeons who are experts with treatment, healing time is much shorter. Costs are much less.
As Gilles said, this “data” is not easily measurable. (Forgive me, Gilles, if I paraphrase inappropriately.) But it is very much observable by those who have been around on the CH boards for a while. And I suspect by those who have been involved with ACOR for along time.
THere is a whole heck of a lot more to this than a “supplement”.
Dave, I do indeed feel the birth and growth of something I cannot describe accurately yet. It is not about you, if that’s what you are worried about (not!), although we may have a conversation about our definitions and what we perceive as mimimum requirements for validated data. I am aware that you are the supranatural salesman for ACOR. I even stole your voice 🙂
I am seeing multiple effects of the explosion of social networks and while some of these effects are clearly wonderful there is a dark side that has not been covered yet.
The “data thing” is just one example. And yes I was part of the group that developed Health Data Rights and its attached declaration of health data rights. That should be a pretty clear signal that I love data, just in case anybody ever doubted that fact 🙂 But love is not always a blind activity.
Let me summarize my POV: Having access to your health data is akin to a universal human right. But having access doesn’t automatically translate in benefits and could even be detrimental if access is associated with very low health and digital literacy. In other words, I believe that personal access to your health data can be of great benefit if you are a sophisticated e-patient. That benefit may not translate easily to the entire population (a maybe valid point from DarthMed). In any event, since we do not have validated results about the impact of massive direct to personal health data we risk ending up with unintended consequences. It would be great if Kaiser, Geisinger or Intermountain could publish what they have learned internally about the benefits/negative effects of direct patient access to their personal health data. They are the true front runners.
I think it’s hard to know what’s a good source, and what’s valid information, whether that’s on-line or from a “reputable” medical journal or textbook. As we well know, many doctors who author academic articles have industry ties and, too often still, those connections are undisclosed.
But it’s the same with on-line medical info – a lot of medical bloggers have industry links, and their disclosures are essentially unregulated.
The bottom line, I think, is to be skeptical of all data that might influence a health decision, no matter where you find it, and always read the fine print – methods, stats, study sponsorship, dates of analysis, etc.
In the weekly Healthcare Social Media chat tonight on Twitter (#hcsm), @mkmackey said “I noticed that if you complete a personal Google profile, through the Buzz, SEO is definitely high.” I asked exactly what she meant, and she said “my experience was almost immediate higher ranking in search.”
Has anyone else noticed this? Might Google now be giving preferential ranking to people who play by its rules, i.e. fill out a Buzz profile?
Here I am, an avid ACOR promoter (it was in my Philadelphia speech yesterday, and I just raved again tonight in another media interview), so I’m clearly not anti-ACOR. And I didn’t even mention health data in either event. I just have no idea what you’re talking about.
I’ve loved watching the conversation twist and turn – thanks so much to everyone who has posted & tweeted.
To bring it back to one of the original threads, I wanted to share the following email from Christie Silbajoris of NC Health Info, who gave me permission to post it here:
“NC Health Info, like so many other ‘small fish’ is a quality, well-maintained site, but its purpose is not the same as the purpose of the larger sites that are being preferred by the new search engine strategies. We are trying to guide people in North Carolina to quality health information which puts us in a different body of water from Mayo, WebMD and MedlinePlus. We still want people to find us readily, and we think the strength of NC Health Info being findable and frequently found in web searches (especially those that contain a geographic component) is a good thing, but our target audience seems significantly different from those ‘big fish.’ Our main goal is to be findable — discoverable — primarily by those for whom our information is intended. Initially we have to swim in the ocean and get caught, then get return visitors or have other sites reference us. Clearly, we need to look for other ways to guide folks to us such as getting other sites to link to us specifically, like NC Live, other libraries, agencies, businesses, patient portals, etc. These will increasingly be set up by health care providers as EHRs expand and have a patient portal feature. In other words, we need to be a bigger fish in a smaller pond.”
Susannah,
I just left in your mailbox an article I had not seen before (I can’t believe I had missed it!).
It is the article from Barbara Rimer and many of the main researchers that used to work with her at the NCI.
Trust and Sources of Health Information.
The Impact of the Internet and Its Implications for Health Care Providers: Findings From the First Health Information National Trends Survey
In it, I found this long pearl:
“TRUST IN HEALTH INFORMATION SOURCES
[…]
Respondents expressed a high level of trust for information provided by physicians, especially in contrast to all the other sources. Trust in the Internet as a health information source was divided, with about one fourth expressing a lot of trust and one fourth expressing no trust. Radio was the least trusted health information source.
[…]
Several consistent patterns emerged from these analyses. Trust in health information sources was strongly age and sex dependent, with persons aged 18 to 34 and 35 to 64 years and women generally more trusting of most sources. The differences in trust by age are especially pronounced for the Internet: adults aged 18 to 34 years were more than 10 times as likely, and adults aged 35 to 64 years were more than 5 times as likely, as those 65 years or older to report a lot or some trust in the Internet. Level of education was also independently associated with trust of most health information sources: those with higher levels of education (ie, a high school education or greater) were more trusting of the Internet, magazines, and newspapers than persons with less than a high school education.
[….]
PREFERRED AND ACTUAL SOURCES FOR CANCER INFORMATION
To examine the relationship between trust and actual behavior, we […] (a) asked all respondents where they would go first for information about cancer as a specific disease type and (b) asked those who had looked for cancer information where they actually went. [emphasis added] A striking contrast between where people preferred going and where they actually went is illustrated in the Figure.
[….]
Overall, 48.6% (95% CI, 46.1%-51.0%) reported going to the Internet as a source of first resort, while only 10.9% (95% CI, 9.5%-12.3%) reported going to health care providers first across all ages. Those in the 18- to 34-year age range were almost 9 times more likely to go to the Internet first before going to providers (61.1% vs 7.1%). An almost equal percentage of persons 65 years and older reported going to the Internet first compared with providers first (21.4% vs 20.9%).
Clearly, as the conclusion states, the data portrays a tectonic shift.
Since most people start their Internet health travel with searches, what happens there is fundamental. I suppose this conversation will go on for years to come, since it does have a clear impact on public health.
Patient groups are knowledgeable. I know that from the time I joined my support group to now, the time between awareness of possible Cushing’s to appropriate testing is much, much, much shorter than when I started. And I got the appropriate testing in a much shorter time than those before me. Why? Because of my support organization. Not only was the time before appropriate testing shortened, but teh duration of it also. So diagnosis comes more quickly,
Some Are More Equal Than Others. Health information is obviously an important category of information users are looking for.
Medical Health Blog
How does the Law of Attraction Weight Loss Reviewwork? It is all about believing. If you believe, you can accomplish quite a lot. Here is one example of how it can work. Thomas Edison failed over a thousand times before finally getting the right concept for the light bulb. The reason he pushed on was because he visualized that he would find a solution that worked. If you believe it will happen, you will find it will.