The Issue:
More and more people are collecting formal health data about themselves or a loved one—data on weight, diet, exercise, blood pressure, blood sugar, headaches, sleep patterns, and more. They use pen and paper, as well as devices including phones, or keep track of it in their head. Much of this self-collected data may be useful to public health researchers.
Improving access to self-collected data was the topic of an April 2014 symposium attended by self-trackers, toolmakers, public health researchers, and science funders.
Presenters shared information on collaborative research projects collecting data on physical activity in public parks; cyclists’ routes for commuting and recreation; diet, fitness and wellness activities; sleep and heart rate changes; and asthma triggers.
With self-tracking tools made by private companies serving as the de facto stewards of self-collected data, universities and public health interests face numerous data-sharing challenges. Collaborations between researchers and toolmakers have issues with data validation, effectiveness, and aggregation, as well as granting individual participant permissions and allowing two-directional data sharing.
Conclusion:
The researchers who use self-collected data and the self-trackers who collaborate with them “are engaged in a new kind of skillful practice that blurs the line between scientists and participants. To us, improving access to self-collected data for personal and public benefit means broadly advancing this practice,” the authors write.