Health self-tracking is in vogue. But is it more of a boon or a burden?
Kelly D Myers's insight:
If data are tracked and no one analyzes the information, does it make a sound???
In the last few weeks I have read numerous comments and articles that raise fair questions about the value of self-tracking or the quantified self “movement”. It reminds me a little of the early days of Microsoft and Apple arguing over which was more important, hardware or software. Self-tracking without analysis and learning from the effort is a little like buying an early PC and not buying software to run on it.
The April 1 article by Thomas Goetz in the Atlantic, “The Diabetic’s Paradox”, describes the challenges patient’s with diabetes face self-tracking their disease. He compassionately articulated the difficulties that self-monitoring causes for individuals with diabetes and quotes one study where many “regard self-monitoring as an enemy” and as a result compliance with self-tracking is low. Mr. Goetz then compares diabetes self-tracking with the new wave of self-monitoring being “recommended as a panacea” for other diseases. He asks if there are lessons to be learned from the group that has the longest track record with self-tracking. He closes with three lessons for self-tracking design by saying it should be effortless, consumer oriented, and address the emotional needs of the patient.
I agree with Mr. Goetz’s recommendations and I offer two more. Data collection without integration and analysis is futile. I echo the comments from the Strangely Diabetic Blog where Mr. Strange states, “Data by itself, with no analysis, is totally meaningless.” First, we have to find ways to make it easy for the individual to integrate information from several different sources. Then most importantly, we must give them a tool to aid in their analysis and insights. To date, little has been done to help individuals integrate and gain wisdom from their own EHR, activity, dietary, and medical self-tracked information. We have to give them meaningful and actionable insights for going through the physical and emotional hassle of collecting data.
New data and ways of capturing them are readily available. The challenge is that all of the data are in silos and cannot be easily integrated for analysis. We have to focus our efforts on ways to identify, integrate and mine disparate data sets to help individuals improve their own health. In biology there is a term called "hybrid vigor" or "heterosis" which refers to an offspring's superior qualities or vigor that result from crossbreeding genetically diverse parents. Could it be that there might be an "Information Hybrid Vigor" or "Information Heterosis" realized by bringing together individual centric medical history, activity, and nutrition data to find successful patterns of behavior? Can we build an interpretative analysis engine that would recommend small behavior changes that would yield leveraged health benefits?
The time is now. We need to give the individual the tools to better understand where they are in their disease and deliver daily insights about small incremental changes that can be made to improve their diabetes outcomes.
In 2009, Wisconsin clinicians sequenced all the protein-coding DNA of a very ill 4-year-old boy named Nicholas Volker. They used the results to pinpoint a gene mutation at the root of his life-threatening gut inflammation, as well as to identify a risky but ultimately effective treatment. Nicholas's story was hailed as one of the first successes in the long-promised goal of using sequencing to steer clinical decisions. But as the approach proliferates in the treatment of rare genetic diseases, cancers and other areas of medicine, researchers say it's time to change both the name and the framework of a field that for more than a decade has been termed 'personalized medicine'.
NEW YORK, Dec. 8 /PRNewswire/ -- The market for personalized medicine in the United States is already $232... (الطب الشخصي ينمو بمعدل ١١٪ سنويا. مستقبل الممارسة الطبية سيركز على مايفيد المريض كشخص بدل كونه حالة مرضية.
Members of the Penn State Board of Trustees heard today (March 15) about Penn State Hershey’s investment in personalized medicine research, a rapidly evolving approach to medicine that allows doctors to tailor treatments to each individual rather...
Medical product companies that figure out how to embrace and most effectively apply emerging analytic and digital health technologies, and think creatively about new risk-sharing business models, will be best positioned to deliver impactful...
Kelly D Myers's insight:
Good article on Frobes.com by David Shaywitz, MD. PhD (Harvard, MIT) on the challenges BioPharma companies are facing. Of note, the "Three Alternative Approaches" does a great job summarizing the leading edge of new ways to address current challenges.
Dr. Shaywitz’s "Analytics" and "Phenotype" alternatives that are described highlight the potential value of the integration of disparate data sets and Patient Centric Analyses. The alternatives may be particularly well suited for disease categories where the ideal patient population is small. Today’s niche disease categories have created a need to identify small subsets of patients. These are individual patients who are difficult to target within a larger disease with traditional data sets. There are new patient centric analytic strategies and data sets available to meet this need.
2012 Panel on Clinical Effectiveness Research. Great quotes by Reed Tuckson, United Health Group.
"The only place that you can go anymore to get another dime (for healthcare) is on the consumer. .... The consumer is the only place you can cost shift to."
.... "Dissemination (of information) is not the problem. There are huge amounts of information with a plethora of ways to get it out. The rate limiting step is how do we educate people to make choices in an era of uncertainty. Especially in a genomics where the answers are not clear cut, but probabilistic."
Technology is making it easier than ever to track everything from your sleep cycles to the food you eat — and even your amino acid levels. ("The Quantified Self made a strong showing at South by Southwest.
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