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, high-quality clinical research, so patient’s anecdotal experiences provide the only evidence. No method exists to help patients use this evidence to make decisions about their own care. My research aims to bridge the massive gap between clinical research and anecdotal evidence by putting the tools of science into the hands of patients.
Specifically, I am enabling patient communities to convert anecdotes into structured self-experiments that apply to their daily lives. The self-experiment, a type of single-subject (N-of-1) trial, can quantify the effectiveness of a lifestyle intervention for one patient. The patient’s challenge is deciding which of many possible experiments to try given the information available. A recommender system will aggregate experimental outcomes and background information from many patients to recommend experiments for each individual. Unusual interventions that succeed over many trials become evidence to motivate future clinical research.
I’m sharing the current status of my proposal to invite feedback and discussion.
I just returned from spending a day with the team working on the Collaborative Chronic Care Network (C3N) who are part of the amazing ImproveCareNow (ICN) network of clinics as well as some very creative visionaries building the Anderson Center of the Cincinnati Children’s hospital.
ICN/C3N is focused on helping the families of children with Crohn’s disease or other IBS/IBD diseases like Ulcerative Colitis. In recent years the team has focused on improving care delivery by showing how a network of centers can systematically improve care delivery by being disciplined in measuring and sharing outcome data. They actively seek to translate learnings from over and under performing centers or sub-populations to change care delivery across the network and effect a shift in the mean outcome curve for chronic disease.
More to the point, they are actually implementing the data collection, cross-institutional transparency and systems processes we all talk about. Continue reading “The Collaborative Chronic Care Network (C3N)”
What is Self Tracking??????????
Self-tracking is a process through which we attempt to uncover patterns in our daily lives or environment. Tracking can be used for a variety of purposes, including exploratory (what correlations do I see), explanatory (why does this happen) or experimental (If I change X, Y should happen). Regardless of the specific purpose, our ultimate goal is almost always to develop some model of cause and effect that we can use to inform our future decisions. The discovery of cause-effect relationships and the consequences of interventions is the essential aim of the scientific method. It takes years of education and practical training to understand how to apply methodology to gain valid insights into fundamental questions about cause and effect in some natural or artificial system. Methodology is crucial to avoid developing incorrect conclusions.
However, we must also acknowledge that tracking, modeling and intervening in system is a fundamental human exercise. Continue reading “Self Tracking and Methodology”
I had a great time giving an unusual talk at the Quantified Self meetup in SF last week. Several people asked me to post slides online. There were also a few questions we didn’t have time to address to which this is a partial answer.
Self-Experimentation without a Written Record
Tracking my lifestyle changes and related symptoms on an ongoing basis has proved to be challenging. The severity of my symptoms have never been such that I’ve made detailed note-taking a priority. Instead, I slowly evolved a mental methodology for keeping track of my experiences by focusing on one hypothesis at a time and slowly accumulating what I consider to be informative observations and conclusions.
In practice, I mentally maintain two mental ‘records’:
Continue reading “Self Tracking without a Written Record”
A video link of my talk at the Mayo Clinic Transform Event.