Table 3.

Suggestions to Improve Project Definition of a Medical Information Commons Expand possible uses

Expand possible uses “When you talk about health data and information, some of the information you might collect around lifestyle or broadly cultural environment I don’t think about medical in that sense. I think about health. I think it’s great that you include health in that, but as you continue to define it, I think making sure that it’s not just medical if your goal really is to think broadly about health. That probably gets then into what my ideal would be.”(P24) Broaden range of data types “Maybe a health information commons would be more relevant with a very broad definition of health that would include socioeconomic status. Do you have home and what is the condition of your home? What is your income? What is your education level? Because all of these things tie into your health status.” (P35) Describe stewardship of the data “We do also need to offer certain protections, security protections, privacy protections to the individuals and maybe it’s just making sure that participants who are giving their data are getting something in return or something. There’s something else there that’s about being good stewards of the data. Somebody has to have responsibility for ensuring that the data is secure. I think that’s part of what a commons is about in the knowledge context”(P16) Clarify “broadly available” “I guess the question of what broadly available means is always a tricky one and again I’m thinking of this more from a legal standpoint because broadly available can mean different things in different contexts. Whether broadly available means that anyone who wants it can get it or anyone who reaches certain conditions can get it. Those are the sorts of questions that I would want to know in terms of further clarifying the definition.”(P2)