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!
Will Foursquare incentivize life?
I joined Foursquare today. I am officially a newbie!
Why did it take me so long? Aside from a hectic schedule and generally being overwhelmed by information, I quite frankly didn't want folks to know my whereabouts at that level of detail. The gaming aspect alone was not enough to draw me - I could care less about earning points by checking in to cool placees, and becoming a mayor. For me, the tipping point was internally motivated; I thought, "Where might this go in the future?" and suddenly my brain imploded. I did a bit of research.
At its heart, Foursquare is basically a framework for incentivizing human behavior, using certain gaming principles. Users "check in" to locations and earn points and badges, and share information about locations with other Foursquare "friends". Right now, the incentives are basically popularity/social networking and competition. This is usual with these sorts of Web 2.0 start-ups, and for some people, that's enough of a draw. However, with additional financial incentives (e.g., check in here for 10% off this doohicky), Foursquare could change the world by better attracting a huge user population: consumers. It's already happening. For example, Starbucks created its own Foursquare badge in May to try to appeal to its more loyal customers, and of course Foursquare has plans to broaden its appeal (and financial incentives are a biggie.)
So in the immediate future, sure, folks might start using Foursquare to get a deal here and there - but what might come next? This is where my brain liquifies - not in a bad way. Imagine all the incentives and services that can be provided to humans that are geo-trackable, tagged with information (some profile-based, some near-real-time), plugged-in and engaged. This is an advertiser's dream. However, if the API remains open and the community can keep developing apps (i.e. purposes), the appeal will reach far beyond advertisers. Users themselves will create uses, demand functionalities, and dream up new and interesting ways of overlapping the virtual and physical worlds. You could do a voice search for the nearest person certified in CPR to help you with chest compressions (maybe they'll have a CPR badge?) You can find a Boy Scout to walk you across the street. You can find a random person nearby who also happens to be craving avocado icecream. You and everyone else in a given restaurant can complain together about the loud dude in the corner - God he's annoying, and look at all the bars he checked in to before coming here. Wait - is that the mayor?
I'm being silly, but hopefully you get the idea.
e-Patient Infiltrates Medical Professional Assessment Organization
On January 11, we had a guest come in and shake things up a bit here. Jen McCabe Gorman gave a really engaging talk (which can be found here if you’ve got an hour to kill and feel like you could use some stimulation) about medicine, social media, and how the two can be mashed together to help you become a participant in your care as opposed to simply the object of your doctor’s care.
We had a record turnout for her morning session – literally, I think we set a record for attendance! – and then she took the rest of her day to brainstorm with smaller groups of us about topics like patient safety and communication skills (See inset pictures of the white boards... it's okay if you don't understand them. I don't think I do anymore, either. But while she was drawing them, they really made sense!). It was really interesting to see the crowd really start trying to see things from a different perspective, that of the "expert patient" or e-Patient. Even a youngster like me (almost 3 years here which is a drop in the bucket for some folks) has been indoctrinated into thinking that an “expert" must have a bunch of letters after his or her name and run a medical school or a hospital. Jen’s perspective was, in a word used by many folks at the presentation, refreshing!
And now for a non-solicited plug: You should really follow Jen on twitter for awesome scouting tidbits, and get involved in her #getupandmove initiative. It’s a way to challenge your friends to improve their health by making microchoices about their activities. Also, you should check Jen out on LinkedIn to see the many projects she has and is working on currently.
If you’re anything like me, you’ll look at Jen’s profile and think, “She’s just about the same age as me… what the heck have I been doing with my life?!” Yeah. She’s that awesome. And productive. And hopefully a collaborator for many moons to come!
Relatedly, there are now hundreds of hospitals who are finally "getting it" as far as utilizing social media tools to create better strategies for caring for their patients. See if your local hospital is on the list!
Will the public “buy” Blippy?
Today I stumbled upon a really strong example of how certain subsets of consumers are willing to sacrifice privacy in exchange for what I'll call "social convenience". Blippy, which is just in beta and was recently highlighted in a New York Times article, is an online social network that lets you share your recent credit card purchases with your friends. I haven't actually used the service, but from the description, it seems to do this automatically in a "Twitter-like" microblogging fashion - a type of passive, social information-sharing. There are, of course, ways to restrict what is shared with whom, but in general I think this is a step in the direction of transparency. The question is: will people find benefit in sharing where they are and what they are buying (and for how much) with their friends?
My guess is yes, but I am very curious about what the early adopters will look like, since users of this service will need to have, for example, (a) access to the internet, (b) a credit card, (c) available funds on their credit card, (d) an interest in shopping and purchase-related information, and (e) friends who possess characteristics "a" through "e". I look forward to seeing how this one pans out!
Hey, Miss Manners, welcome to 2009.
I heard a segment on NPR the other day about mobile device technology etiquette. (As a side note, I notice that most of my posts are inspired by things I hear on NPR. What would I do without you, public radio?) It basically laid out some ground rules for when and how it's appropriate to use mobile devices when you're dating someone. In this new and strange age of technology, I suppose rules about this kind of thing were bound to happen. For me, this is a really interesting area to get into.
Remember the Milk, and other things
I spent the last I-don't-know-how-many years of my life in a seemingly constant rainfall of post-it notes and napkins, each with some number of my own reminders scrawled on them. If I had no paper, well, my own left hand would do for taking down a reminder (which could be anything from, "Buy milk" to "Find that post-it you lost, or try to remember what was on it.") [Aside: I'm going to skip making a joke about the left hand knowing what the right hand is up to, because that would just be bad.]
Anyway, I tried all sorts of non-paper-and-pencil task-organization systems, but they were all platform-dependent and just really didn't suit my needs: multiple inputs, multiple outputs, always in my face, easy, convenient, simple, sharable.
Enter Remember the Milk. This is basically To-Do in the age of Web 2.0.
Then take that, and put it on your Active Desktop (if you're a Windows user) with this nifty tip from Third Error.
Then, go throw away all those stupid lists. Or set them on fire. It's really up to you. You can get your task list texted to you each morning via Twitter, check it out on your Desktop and update it via email/Twitter/text/etc.
For someone with a brain chock full of both useful and useless information, this is Big, and not in the Tom Hanks sort of way.
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.
Scouting Themes
Research
- Experience-based design: from redesigning the system around the patient to co-designing services with the patient
- Sleep Deprivation, Physician Performance, and Patient Safety
- Education Research: Cognitive performance is preserved in sleep-deprived neurology residents
Bookmarks
- Wellcome Images - Biomedical, humanistic images under creative commons license
- openphoto.net | home to 14843 images
- John Mellencamp Likens Internet To A-Bomb
- Manymoon | Task/Project Management | Google Apps
- Augen's $150 Android tablet hits Kmart circular, coming to stores later this week