Evidence from Patients Like Me
What is evidence? I ask myself this question fairly often since I work in innovation. In trying to generate disruptive and transformative ideas, it is important to understand what has been "established", and why. The next question is: should it change? If so, how?
In Medicine, evidence often comes in the form of an article published in a peer-reviewed journal; hopefully the research demonstrates the principles of scientific rigor. In Law, evidence must conform to a number of rules and regulations in order to be admissible in court. In short: established disciplines try to ensure that decisions and future actions are based on good information, and thus create standards for how that information is captured and how it should be used.
This is a good thing. Not just anything should be considered "high quality" - if that were the case, we might see McDonald's publishing studies on the health merits of Happy Meals and McNuggets.
Unfortunately, though, the path to high quality information - or in other words, evidence - is resource-intensive and time-consuming, and requires expertise that only resides in a certain subset of the population. This rigorous process - as important as it is - no doubt excludes more than just "bad information". It can also exclude new types of information, which may be useful but which don't fit established standards for "evidence".
Case in point: A recent article in Technology Review discusses how the patient social-networking site PatientsLikeMe came to the conclusion that lithium did not slow the course of ALS. Eighteen months later, the journal Lancet Neurology published a study with the same conclusion. I think it is likely that many researchers did not take the conclusion seriously - or even know about it - until it was published in the Lancet.
This bears the question: what types of information (potential evidence) are being overlooked in patient social networking sites, and should Medicine be paying more attention? I could imagine, for instance, that a community of patients could identify chief complaints associated with diseases that are currently not in the published research literature. This could improve diagnosis. Patients could also identify previously unknown drug contraindications, just by describing their experiences with other patients.
Now, I'm not suggesting that we take information from patient communities and immediately consider it evidence, but shouldn't we consider its potential utility and find a way to apply it appropriately? I envision a physician-patient interaction going like so:
Mrs. Smith: Doctor, I was wondering if Fakeprofin might help my symptoms.
Doctor: Well, Mrs. Smith, Fakeprofin does address the symptoms you describe, but I want to make sure it is okay to take with your other medications. Let me see here....(type type type)...Hmmm...There are no clinical trial findings available yet. However, it looks like patients similar to you on PatientsLikeMe have had no issues and have had favorable experiences, so let's give it a cautious try. I want you to follow-up with me in 2 weeks or sooner if you experience any of these problems....
Okay, I'll stop rambling now - but hopefully you get the idea!
Medicine 2.0 – A truly engaging conference
When I scout “medical conferences,” I attend sessions, scribble notes, and retreat to my room in complete control of the television remote (a feat almost never achieved at home). The “take home” is usually an update on the latest techno-medical snippets for colleagues interested in the future of medical education and assessment.
Medicine 2.0 was a unique experience for me. Was it something about the size of the conference? The sense of community among participants and speakers? The constant buzz generated from the concurrent sessions? I’m not quite sure when it happened, but I became a participant rather than a spectator, and for the first time enjoyed a relationship with fellow conference attendees, even if it was via Twitter. I experienced first hand the impact of social media (see my previous post). I did stop short of fraternizing on the dinner cruise—not quite ready to relinquish the remote control.
During his opening statements, conference chair Gunther Eysenbach clarified the 1.0/2.0 thing.
- Medicine 1.0 – what a mess it is today
- Medicine 2.0 – what it could and should be
The keynote Gimme My Damn Data, given by cancer survivor and participatory medicine champion, Dave DeBronkart (aka e-Patient Dave), was thought provoking and quite moving at times. Take home points for me included
- Keep an eye on the movement toward decentralized medical care – how technology changes industry; the general hospital model is not sustainable
- It’s a human right to have your health data – your life may depend on it
- Peer controlled study data is not useful (woefully out of date) for the newly diagnosed
- Physicians and patients as partners, makes for optimal medical care
The first panel discussion (Jen McCabe, Saad Alaam, Chia Hwu, Robert Fraser) responded to the challenges of
- How to build confidence in social media
- How to affect institutions with power
- Vulnerability of putting yourself out there in online health care situations
Jen was as spunky as I expected, and during a later session had the audience shouting out micro choices we regretted and tweeting #getupandmove.
Reviewing the proceedings from the 2008 conference, it was obvious that there was a shift in the focus for 2009. The majority of the sessions last year seemed to focus on tools and technologies, with this year focusing on the trends and movements around the social and participatory nature of Medicine 2.0. I hope to follow up on connections with interesting “people in motion” and some of the resources I learned about that might facilitate medical education and/or the practice of medicine in the future.
I attended a number of interesting sessions and more detailed information about each session can be found on the Medicine 2.0 Official Blog.
- Learning in a Virtual World: Using Second Life for Medical Education
- What do residents really want? The Stanford Ether Project
- Social Healthcare Networks: Connecting Patients and Clinicians
- Enabling Semantic Health Apps: The MEDgle Clinical Decision Support Service API
- Apomediationand Women’s Choices of Birth Place and Attendants
- Improving Patient-Physician Communication about Internet Use
- Twitt-ER: Using Twitter in the ER for Dispatch, Order Communication, Patient Alerts, and Progress Reports
- Solas a Virtual Community for Children with Cancer
- Facebook: Awareness-raising, Fundraising and Support for People Affected by Breast Cancer
- ScanGrants: Reaching out to Researchers in the Health Sciences www.scangrants.com
- Bikmas 2.0: A Biomedical Knowledge Management Antenna System
- OrphanData.org: Enabling Transdisciplinary Scientific Collaboration Using Web 2.0
- Implementing Participatory Medicine Strategies and Exploring the Evolution of Choice/Control Aware Care
I’m all a’twitter or am I a tweeter?
Because of my interest in social media, especially as it relates to healthcare and medical education, I’ve heard about Twitter. I’ve even tweeted on occasion. I tweeted twice before today, and have found Twitter useful for keeping track of my favorite medical blogger, Berci Mesko of Scienceroll. I have two followers, a coworker and my son's friend. In my wildest imagination, I never thought I’d be tweeting through the entire first day of the Medicine 2.0 Conference.
During the opening address this morning, there were two different display screens. One to show presentation slides and the other a steady stream of Twitter posts--or Tweets. I was busy scribbling notes with my trusty low tech #2 pencil (pictured above) and noticed that many of my scribblings were flashing by on the Twitter feed. It was one of those moments that makes you go hmmm...
I turned on my laptop and logged in to my Twitter account, and started taking notes. I mimicked the other tweets by adding what they called a “hash tag.” I prefaced other people’s Twitter usernames with @, although I wasn’t sure at first why I was doing that. Soon I was tweeting with the pros, and a funny thing happened. Someone referenced one of my tweets in their tweet. Is that a retweet? OMG my name in lights @r0wsbud! While I was using Twitter as a note taking tool, for my own selfish purposes, someone found one of my tweets worthy of note. Hey, I thought, what if other people found my tweets useful?
So, I tweeted and I tweeted and I tweeted, and another funny thing happened. The counter showing my followers changed to 3, then 4, then 5, and so on. I had this Twitter account with 2 followers for a year, and in a matter of hours, 19 people were following my tweets. Maybe these folks will wander on to our blog on occasion; maybe I’ll make connections with some “people in motion” with whom we might brainstorm or collaborate on a project. Maybe I’ll get a raise this year--okay I am asking for a little too much.
Anyhow, today I shared my notes with the entire Medicine 2.0 Community, and they shared theirs with me. Later I’ll review the feed using that #med2 hash tag I mentioned earlier and use all of my notes and about a million others to write a new post about the conference itself. But for now I think I’ll reflect on what happened to me today and perhaps consider retiring my #2 pencil.