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?
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.