Starting in the mid 90s a new paradigm of medicine was born ― first as a grassroots movement and then rapidly evolving into a phenomenon of great interest to public health professionals who started early to study its potential impact on the healthcare system. This happened even while this new world of connected and informed health consumers was constantly denigrated by almost all physicians and physician organizations. This new paradigm was a direct child of the concurrent growth of public access to the internet and of the development of medical knowledge systems available freely to all (e.g., PubMed, OMIM, and PDQ Statements). Suddenly, everybody could gain easy and free access to information impossible to find until then, unless you had direct and constant access to the best medical libraries. This fact, associated with the availability of online peer communities profoundly transformed the level of understanding of millions of patients and/or their caregivers about the medical condition that concerned them.
Before the advent of the public internet, rational ignorance in medicine was absolutely normal. Then, in a cyber-instant everything changed. The cost of gaining significant understanding about almost any medical condition dropped to zero. At the same time it became clear to many that we just couldn’t and shouldn’t wait any longer for any centrally engineered improvement of the healthcare system.
Read the full column, “Participatory Medicine: an End to Rational Ignorance in Medicine.”
Thanks. You’re a monster of information and deep thought.
I’d never heard of “rational ignorance.” For those who don’t know the idea, this is from Gilles’s full article:
This is a deep topic, I think. I’m trying to figure out how I’ll explain it to friends & family. Can we sum it up by saying it’s now quick and easy to find what we want, or moreso than ever before? Seems too simplistic a summary.
Simple is good ™.
Without the internet, looking of medical information was difficult and expensive. It’s now quick, easy and cheap to find what we want, or moreso than ever before.
It is easy to be an informed and engaged patient.
Is it easy though?
Information is much more readily available, but you have to be literate (in English, if you want to access PubMed, etc.), you need internet access/savvy, and you need to be ready to engage. There are still pockets of people in the U.S. who have 1, 2, or 3 of those strikes against them.
“More so than ever before” is the caveat I’d keep in mind.
Point well taken, Susannah. I am sure you remember the conference we organized with UNC School of public health about the digital health disparities and how much of an eye opener it was!
You will notice that I never use the term universal because of the well known issues of the digital divide. But given the limitations we can still say that for the large population that has direct internet access, is sufficiently fluent in English and is willing to become engaged, the situation has radically changed in a very short years.
We (that’s me putting on my ACOR hat) are much too small to have any impact on the digital divide and must keep on pushing the limits with the population of e-patients that can directly benefit from our services. There is nothing like accumulated experience to be able to help frame policy changes in the future. That’s our job, although we now very clearly that we cannot be the voice of minorities, since they basically do not use our resources for complex sets of cultural reasons. But with this clear caveat, we have still served over 500,000 since we started!
You may have read The New York Times article today about second and third opinions from other patients. Apparently, Susannah and her team were the key source. As Gilles knows, it was his ACOR blood cancer list in 1996 that led me to M.D. Anderson (my first ever trip to Houston) and later participating in a clinical trial – which worked. I am a 12-year leukemia survivor and very grateful to the community members who helped me numerous times along the way.
I have dedicated my life to creating community online and also, in a supplementary way, on radio. But my concept of community is a bit different. I believe it should not be seen as patients doing their own thing because doctors didn’t either listen to them or give them enough time – or lacked knowledge. I believe patients, caregivers AND specialists/researchers can easily be in ONE community together toward a common goal of better health for current patients AND future ones.
If you look at my little home-grown site, http://www.patientpower.info (with generous support and cooperation from the nation’s top medical centers AND their patients), we have brought together inspiring patients and renowned experts in a dialogue. In a few weeks we will add P2TV, much like CNN’s I-reports where patients will send in videos of their stories and also their questions. I am hopeful it will take off. And I am actively working to partner with community folks like Trusera and medhelp.org to form a union, in Health 2.0, of patients AND health care professionals who have devoted their lives to those same health concerns.
As an aside, I know the M.D. Anderson docs read patient comments on Gilles ACOR lists. They often know what a patient like me is saying BEFORE I come to see them. So the phantom community of patients and docs has been there a long time. Now I am working to make it all transparent.