Cultivating a Cycle of Trust With Diverse Communities in Practice-Based Research: A Report From PRIME Net

To the authors: I enjoyed reading your, finding it particularly interesting that trust emerged as such a strong feature of the framework you arrived at to describe research participation in diverse communities. It seems to me that the trust cycle you describe has much more in common with the concept of interpersonal trust than with trust in a social institution. In fact, as you point out, interpersonal trust is sometimes needed to overcome distrust in medical research as an institution. Interpersonal trust is often defined as the expectation that another person will act to help, or at least not harm, given the opportunity. As research participants, people are make themselves vulnerable in ways they cannot fully control; thus is makes perfect sense that trust is a key to understanding participation. The activities you identified as promoting trust in medical research - honesty, transparency, personal contact, confidentiality, continuity, sharing of information, mutual goals and benefits - are consistent with what has been found in social psychology, sociology, and in studies of patient trust in their doctor. I applaud your point that while the elements needed for trust may be common, establishing those elements often varies from community to community and person as person. I also agree that once established, trust in medical research can often be transferred to future investigators. By the same token loosing trust can have serious future repercussions as well. Just as we have professional ethics and standards that help foster patient trust, we need protections and support for research participants, particularly for those from communities that are usually under-represented in clinical research. We also need to find ways for those who we used call 'research subjects' to be research participants in more than just name. There is a movement to do this, most obviously evidenced by the Patient Centered Outcomes Research Institute. As your study shows, practice-based research networks should and can play a key role in this work by creating opportunities for participation to patients as well as providers in their research.

Competing interests: ?? None declared