Crowdsourcing Health Discoveries: from Anecdotes to Aggregated Self-Experiments
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).
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.
It has been gratifying to recieve some great presscoverage of C3N; the ideas we are exploring are clearly starting to capture the imagination of a larger audience. However, C3N is a larger and far more collaborative project than the articles imply and this post aims to provide some detail from my own perspective, expanding on my earlier introduction.
Origins of C3N
C3N is a platform in the broadest sense. It consists of human, process, and technology components. It was initiated by a transformative research grant from the NIH Director’s Office in 2009, the result of a proposal developed by Jesse Dylan of Lybba, Peter Gloor of MIT, Neil Halfon of UCLA, and Peter Margolis and Michael Seid of Cincinnati Children’s Hospital and Medical Center. The inspiration for the effort emerged largely from Jesse’s vision of bringing patients into the care system as equal partners and Peter Margolis’ experience developing large networks of clinicians that standardize care and apply process improvement techniques to optimize care and improve outcomes for pediatric patients with Inflammatory Bowel Disease in the ImproveCareNow network.
A discussion I had earlier today reminded me of an argument I’ve had with friends in the scientific community on multiple occasions. The argument revolves around the belief that conclusions of science, such as the effect of cholesterol on heart disease, suggests specific interventions, such as reducing the dietary fat that we believe causes high cholesterol. In essence, we debate the means by which new scientific evidence should be used to influence public policy and private behavior. Taking strong evidence of a specific causal link between a cause and an undesireable outcome as prescription for a population intervention to remove the causative factor is fraught with danger. There are many reasons for this, but the two most salient are confounding and the law of intendended consequences.
Over the past year, I have had the pleasure of advising the non-profit organization Lybba. Lybba’s vision is closely aligned with the work we’ve been doing at New Media Medicine. This month I accepted a one year Research Fellowship with Lybba; the objective is to complete and apply my PhD research in the context of Lybba’s ongoing projects. Chief among these projects is the Collaborative Clinical Care Network (C3N) which I wrote about a few weeks ago.
I’ve been extremely impressed with the scope of their ambition, the quality and breadth of their team and partners, and the concrete projects they’ve chosen to invest time in. Continue reading “Innovating with Lybba”→