Many of us struggle with chronic disease or something worse, an undiagnosed low-grade malaise we must learn to live with. If you walk outside and look at two people on the street, chances are awfully good that one of them has a health problem that impacts their daily life. It’s easy to forget that over 50% of US adults have one or more chronic diseases while nearly half the population reports suffering caused by minor problems like undersleeping, unexplained fatigue or mental illness.
There are many medications offered for our ailments, but most drugs are designed to treat serious problems and don’t always help as much as we would like. In fact, one drug company estimate indicates that 90% of drugs work in less than 50% of the targeted population. On average, medications for mental illness produce only a 10% improvement compared to placebo and are typically evaluated only in those with the most severe illness. These small gains, and all this uncertainty, come with a hefty price tag: unpleasant side effects and adverse drug interactions. For example, adverse drug interactions result in 1.5M annual hospitalizations including an estimated 100,000 deaths, more than auto accidents and AIDS combined.
Most of the research that leads to devices, drugs and guidance for our physicians is funded by for-profit entities. The real money is made on ‘blockbuster’ drugs or devices that large numbers of people have to use on a long-term basis. This limits the interventions and conditions that the commercial research industry can reasonably investigate. It also means that the healthcare system tends towards putting us on life support, but knows much less about how to help us live healthy, drug-free lives.
For serious genetic or infectious illnesses, drugs are often the only option for treatment. However, people in growing numbers are turning to the Internet for advice because the health system is poorly equipped to help them with the prosaic problems that, nevertheless, negatively impact daily life. Others are unwilling to accept the cost and risk that come with drug-based treatment. As a consequence, nearly 40% of us participate in a multi-billion dollar alternative medicine and supplementation industry, one that is largely unregulated and largely lacking in evidence.
In recent years, the NIH has started investing in research on alternative and complementary medicines, but the government funding process is conservative in nature and the complex protocols of some alternative therapies are not always easily evaluated using the current tools of clinical research.
In the end, we simply don’t know what works, and are left to our own devices, trying one change after another without much support. And yet, if you wade through posts on patient forums, there appears to be widespread belief that many treatments work in some, and while a great deal of this may be explained through the placebo effects or confirmation bias, it is likely that hidden in these experiences lie profoundly valuable knowledge that might improve the health of all of us.
As an example, a psoriasis patient on one forum discovered that a mixture of Glycerin and Witch Hazel (costing a few dollars each at your local drugstore) stops itching and flaking in most people. For some, it also appears to cause psoriasis to recede entirely. Unfortunately, there’s no evidence of this beyond the discussion thread (I searched PubMed and only found some early studies of Glycerin).
How to know when something works?
What is missing in this patient-to-patient exchange is a means to document this individual experience. What is valuable to a community of us is not that one person tried a treatment and feels that it works, but that they tried something in a specific way that others can review and use with a documented, measureable, repeatable benefit. In other words: an experiment.
An experiment is conceptually straightforward. We try out a treatment a specific period of time while measuring what it is we want to improve. We then compare data about ourselves with and without the treatment. In psychology this is called a “single-subject” experiment, a tool long used to assess the effect of interventions. In personalized medicine it is also known as an n-of-1 experiment, and typically used to compare two medications to see which one works best.
The Personal Experiments platform
I have been working with collaborators at the MIT Media Lab, MIT Computer Science Laboratory, Lybba and members of the C3N Project to develop a model of personal experimentation, data sharing and aggregation that helps us evaluate treatments for ourselves.
Our prototype platform, Personal Experiments (http://personalexperiments.org), is available today. It helps you document a treatment you think might be relevant and then combine it with concrete measurements to define an experiment that you and others can run and share the results of.
The platform helps with the hard parts: figuring out how much data you need, calculating the number of treatment cycles you should do, and performing analysis of the results. It uses SMS prompts or various consumer devices to measure your experience and presents the resulting data back to you using simple charts, circling changes that are meaningful, thus indicating whether an experiment was successful. For example, you can see the user-identified Glycerin and Witch Hazel treatment documented by our platform and an outcome chart showing a patient’s success with the treatment.
Out of the dozens of treatments users discuss online, how can each of us can identify the one most likely to work for us? Trying simple experiments for all recommended treatments could take months or years; for a complex disease like psoriasis, it could take a lifetime. What we really want to know is which one to try first that is most likely to give us a benefit.
A new approach to discovery in health
So what if all these treatment ideas were easily discoverable? What if we could gain confidence whether an alternative treatment really worked for us? What if we could share this knowledge freely with others? What if that sharing made it much easier for each of us to prioritize and evaluate treatments? What if patients, acting on their own, could engage in a legitimate scientific exploration of alternative therapies, supplements and lifestyle changes?
With Personal Experiments we are starting to address all these questions. The emerging world of sensors and the ``Quantified Self’’ is making it easier and easier for us to document the results of trying out a new therapy or working with an alternative practitioner. As Personal Experiments observes user’s experience with specific measurements and treatments, it reduces the time required for future experiments, improving the efficiency of personal experiments for everyone.
The platform also identifies those treatments that work reliably vs. those treatments that work only rarely. Because different people with the same disease respond differently to different treatments, over the long run, we plan to personalize this notion of reliability so that we can customize recommendations for each person. Our understanding of how to combine the data in useful ways improves as we work with more and more users.
We invite you to join us at Personal Experiments.org. It’s a work in progress, but we’re available via e-mail and live chat to support your own efforts and to help you influence future development. We’re adding new features and capabilities each month and engaging with partners to help scale the platform. The more that you engage and share, the more we all learn about how best to improve our health.