Medical Health Blog

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.

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.”

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?

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.

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.

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.

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.

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”.

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.

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.

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?

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.