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.
——–
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?
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://pmedicine.org/epatients/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
I just posted some thoughts about the need for guided navigation in consumer health care search related to Susannah’s main post. I tried to keep it short and to the point, but there is so much I could say about how aggregators and specialty search engines in health care could study user behavior and create better offerings than currently exist.
I think I need to write another post about user research and audience segmentation analysis that health industry information providers could learn from other industries.
Click on my name to read the post, Needed: Guided Navigation for Health Information Search.
Thanks again to Susannah for raising this topic. I want to give a shout-out to John Grohol, too, for so succinctly describing Google’s treatment of the 4 sites that are “more equal than others”.