December 21, 2009
I have been participating in the QS Show & Tell meetings since they started. What those of us in the QS are working on today, and the interest we take in tracking and analyzing all aspects of our lives, is not quite mainstream yet. But many of us feel that like those pioneers in the Homebrew Computer Club what we’re doing will eventually have a huge impact on everyone’s lives. I have written a paper “A Billion Little Experiments
” on the potential to dramatically improve healthcare and medicine by harnessing petabytes of data from individuals taking care of their own health, and on the necessary shifts in mindset required.
In summary, the paper argues that we can and must:
- Enable self-care success with great personal health management tools.
- Empower self-experimentation through education, encouragement, and assistance.
- Exploit the data from these experiments to advance health care and science.
The gist of the story is …
Optimal health practices will vary, at least somewhat, across individuals and circumstances. Today’s health science is too limited to be able to say exactly what is the best health practice for a particular person in his specific circumstance. Optimal health practices will also vary over time Therefore health requires continuous optimization, and constant experimentation to identify changes and seek optimal practices.
People are in fact constantly experimenting, trying new foods, activities, medications, etc. We could theoretically benefit tremendously from this experimentation. Health science would benefit if good data was collected from thousands, even millions, of people and properly analyzed. Today we don’t do this, especially because few people are collecting and/or providing good health data. This is an opportunity wasted.
How can we collect this data? How can we get people to track their health, when we know from long experience that adherence is poor? I propose it demands a fundamental re-examination of the problem of non-adherence, and a focus on supporting people’s desires rather than telling them what to do.
Poor adherence is labeled as a problem of poor motivation and discipline. This is wrong. Adherence is poor because it is nearly impossible, in the context of daily living where health is just one of many competing priorities. People need help, need much better tools, to improve adherence. Such tools are possible, but most of the tools offered to-date are simply inadequate and inappropriate. Far better personal health management tools need to be developed. This is an issue that must be addressed — good experimentation is impossible without the ability to carry out the experiments properly.
Just as important is recognizing that people’s priorities, appropriately, are on living rather than on health. No matter how valuable their health data could be to the advancement of health science, people cannot be expected to take on the chore of tracking. We, who want the data, must focus on addressing their need — to live better today to make life easier today— and do it in a way that will provide the data we want. That’s our design challenge, a burden we must bear, not one to impose on people.
We can do this. We can develop personal health management tools that make people’s day-to-day lives easier, that provide them with help they want, and provide the data that will help us advance health science. We must do this. Without rich data from a broad swath of people, advancement in health science will continue to be hampered by a dearth of data. We must change our mindsets and provide the product & services to inspire and harness a billion little experiments.