Time & Location
July 26th, 1:00 PM, E14-244
Frank Moss, Professor of the Practice of Media Arts and Sciences, MIT
Henry Lieberman, Principle Research Scientist, MIT
Peter Szolovits, Professor of Computer Science and Engineering, MIT
Nearly one quarter of US adults read patient-generated health information found on blogs, forums and social media; many say they use this information to influence everyday health decisions. Topics of discussion in online forums are often poorly-addressed by existing, clinical research, so patient’s reported experiences are the only evidence. No rigorous methods exist to help patients leverage anecdotal evidence to make better decisions.
This dissertation reports on multiple prototype systems that help patients augment anecdote with data to improve individual decision making, optimize healthcare delivery, and accelerate research. The web-based systems were developed through a multi-year collaboration with individuals, advocacy organizations, healthcare providers, and biomedical researchers. The result of this work is a new scientific model for crowdsourcing health insights: Aggregated Self-Experiments.
The self-experiment, a type of single-subject (n-of-1) trial, validates the effectiveness of an intervention on a single person. Aggregating the outcomes of multiple trials can improve the efficiency of future trials and enable users to prioritize the sequencing of trials for a given condition. Successful outcomes from many patients will yield evidence to motivate future clinical research. Aggregated Personal Experiments enables user communities to replace anecdotes with repeatable trials that can be run in the context of their daily life. The properties and viability of the model were evaluated through user studies, secondary data analyses, and experience with real-world deployments.
Earlier this week I joined NEA entrepreneur Jared Hyman of crowdmed.com and “the current” host Anna Maria Tremonti of the Canadian Broadcasting Corporation in a discussion of crowd sourcing in Healthcare. A brief summary and audiocast of the show is available.
Last week, my collaborators from Lybba and I posted a blog entry describing my Personal Experiments project. Please enjoy this little introductory demo. Also, I’ll be announcing a new study on the platform next week; participants will receive a free Jawbone UP!
I was reading an article about the controversial Dr. Oz this morning when a quote from a doctor struck a nerve. In reaction to Dr Oz’s embrace of alternative medicine, he stated: “I’m guided by the evidence.” That’s a wonderful and comforting sentiment to any logical person. We have a methodology called science which helps us move towards the truth through a repeated, disciplined process of experimentation. This process allows us to build confidence in our opinions and actions when we have accumulated sufficient evidence or can appeal to previous authority. The problem is that evidence in medicine is rarely imbued with absolute authority, yet the dogma of medicine is that peer-reviewed journal results are the primary guide to treatment. Clinical trials should be viewed as the starting point in the practice of medicine, not the destination.
I’ve been following a great discussion on Susannah Fox’s blog today. The Lohr article that sparked her post and subsequent comments have taken up the position that Evidence Based Medicine tends to dismiss the role of intuition. I think that is true and reflects a cultural phenomenon that seeks a deus ex machina. Fads emerge and advocate for the latest savior (or rainmaker), eschewing the difficulties and hard work involved in engaging with truly complex, multi-factorial systems.
I’m reminded of a music professor who told my composition class that, “you can’t break the rules unless you first understand the rules.” I’ve thought about this for a long time, why is it you can’t be creative in ignorance of the rules? Ignorance of impossibility, after all, is often the fuel for innovation. Yet it seems to hold true that the best musicians don’t run away from convention, they master and move beyond it. Does a powerful command of the grammatical rules and literary traditions of English limit your creativity in writing? No, it hones and unleashes it!
In it’s ideal form, EBM is a foundation of evidence and rules that should empower and propel individual physician and patient creativity. In the quality improvement context the standard of care is there to help us avoid repeating other’s mistakes, not to tell us what to do under all circumstances. The prosaic landscape of diagnostics and therapeutics are governed by probability distributions over endpoint outcomes, but beyond this there remains endless room for innovative thinking and intuition because any time we come into connection with real people and real bodies, we exceed the ability of our formalisms to compute. We can only meet the challenge of other’s humanity through the lens of our own.
The family doctor or nurse’s job is an impossible one. Given our imperfect description of symptoms, and possibly a blood test, they have to figure out what intervention will help us return to a stable, healthy life. The problem is that human beings are probably the most complicated system that we can imagine to try to regulate. Our environment, psychology, and life habits interact deeply with dozens of major internal organs and body systems which manifest tens of thousands of possible known problems. We know a great deal about the components of our body, but what we do know is dwarfed by what we don’t know about how these components interact with one another. After a brief digression into what makes medicine a hard problem, I’ll introduce some ideas for what we, as patient participants, can do to improve the problem solving process, our own care, and healthcare at large.
A recent TEDMED talk by Albert-László Barabási highlights the rich system of interconnected networks the exist both within and outside our body; networks are a way of viewing the world that we are only beginning to understand. The functioning of our body is not independent from our mind and environment. The bugs in the soil communicate with the symbiotic bacteria that enable us to digest food, the micro-RNA of the plants we eat may directly change our gene expression, the inactive ingredients in breast milk line a baby’s intestines and protect it from external pathogens until the immune system has matured, and our expectation of a treatment’s effect can physically transform how our bodies function (the so-called placebo effect).
AcademyHealth announced the winners of their REACH Challenge contest including my own project, Aggregated Self-Experiments. The project was a collaboration between the MIT Media Lab, Lybba, and the C3N Project of the Cincinnati Childrens Hospital and Medical Center. The project submission was a demonstration of a web-based platform for authoring, execution, sharing, and aggregation of self-experiments.
This platform will be opened up to the public later this month and used to field test the ideas I’ve been writing about this last year, but you can pre-register today. Further, a research study I’m running on the site for people with chronic diseases (initially focused on psoriasis) will be opened for recruitment in the next few days. Pre-registration for the study is also available.