In our March 2014 report, Personal Data for the Public Good, we reported on an exploratory survey that examined individual attitudes toward sharing personal health data (PHD). This convenience sample survey, in combination with in-depth interviews, provides a good baseline for understanding the concerns that arise around PHD. At the same time, we feel it is important to both analyze these data further and extend the dataset with additional surveys and interviews to better understand the contours of the PHD landscape.
There are strong indications, both in our own data and in the research literature, that we can expect that different communities will have different practices and attitudes around sharing their PHD.
- Some people may be less likely to collect data using digital technology, or may employ formats that cannot be easily shared (e.g. using a paper food diary instead of a food-tracking app).
- Some people may perceive greater risks associated with sharing PHD, especially those with chronic or stigmatized conditions, or whose employment, financial, or family situations are more precarious.
- Some people may perceive greater benefits associated with sharing PHD, especially when sharing is tied to access to information, treatments, or community support.
- Some people may have higher intrinsic motivation to share or contribute to the public good.
- Cultural norms about personal information disclosure may differ across communities.
Understanding these attitudes is important, as they may affect the likelihood that certain classes of individuals are represented in these datasets. Hidden systematic biases that influence participation in these forms of research could be harmful from both methodological and social justice standpoints:
The goal of this HDE core research project is to develop a theoretical framework for understanding the factors that may influence individual attitudes and decisions about whether to share PHD for research.
We are conducting surveys and interviews with members of specific communities where we would expect to find attitudes about sharing PHD that differ in key respects from what we found in our baseline survey. By comparing across different groups, we hope to identify and characterize key concerns that must be addressed in the development of PHD data sources and research methods.