Understanding What Information Is Valued By Research Participants, And Why

Health Affairs
Vol. 38 , No. 3 March 2019
Patients As Consumers

Research Article   Patients & Consumers
Understanding What Information Is Valued By Research Participants, And Why
Consuelo H. Wilkins, Brandy M. Mapes, Rebecca N. Jerome, Victoria Villalta-Gil,
There is growing public demand that research participants receive all of their results, regardless of whether clinical action is indicated. Instead of the standard practice of returning only actionable results, we propose a reconceptualization called “return of value” to encompass the varied ways in which research participants value specific results and more general information they receive beyond actionable results. Our proposal is supported by a national survey of a diverse sample, which found that receiving research results would be valuable to most (78.5 percent) and would make them more likely to trust researchers (70.3 percent). Respondents highly valued results revealing genetic effects on medication response and predicting disease risk, as well as information about nearby clinical trials and updates on how their data were used. The information most valued varied by education, race/ethnicity, and age. Policies are needed to enable return of information in ways that recognize participants’ differing informational needs and values.