On behalf of APA, Executive Lead Psychologist for Science Adrienne Stith encouraged the National Institutes of Health (NIH) to finalize its proposed policy to make sharing summary-level study results a routine part of NIH-supported clinical research. Her comments on NIH's proposed study results policy (PDF, 349KB)opens in new window were submitted in response to NIH's recent request for information on sharing summary-level study resultsopens in new window.
In the comments, APA emphasized that participants should receive timely, accurate, accessible, and understandable information about the studies to which they contributed. Sharing results demonstrates respect for participants and can strengthen trust and transparency, improve recruitment and retention, and support informed decision-making.
Specifically, APA recommended NIH:
- preserve flexibility across research settings
- require plain-language, accessible, and culturally responsive communications
- clarify the policy’s scope
- distinguish aggregate findings from individual results
- establish realistic timelines
- provide funding for implementation
- protect privacy
- phase in proportionate oversight
APA also called on NIH to evaluate whether the shared results are useful, understandable, accessible, and equitably available across institutions and participant populations. Sharing research findings should be treated as an essential component of respectful, participant-centered research, not as an optional activity at the end of a study, APA emphasized.
“Research participants deserve timely, understandable results that honor their contributions. With practical guidance, adequate resources, and strong privacy safeguards, NIH can make results sharing a routine part of respectful, trustworthy research,” said Stith.
APA will continue working with NIH to support effective implementation through adequate resources, flexibility, and guidance.
For more information, email Angela L. Sharpe.