ArticleHealth research policy and systems2019
Health researchers' experiences, perceptions and barriers related to sharing study results with participants.
Article in Health research policy and systems, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07180147 (Arlington Longitudinal Optimal Healthy Aging Study), which is not on this map. Cited by 44 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Arlington Longitudinal Optimal Healthy Aging Study (ALOHA)
Who cites it
44 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Current global practice and implications for future research on disseminating health research results to study participants: A systematic review.PLoS medicine · 2025Pooled it
- "I know how important it is": A qualitative analysis of participants' experiences in a vaccine safety study.Human vaccines & immunotherapeutics · 2026Article
- Closing the Feedback Loop: Improving Communication of Findings With Aboriginal Research Participants Through Participatory Action Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Preferences of research participants with experience receiving individual results for future return of results.Journal of clinical and translational science · 2026Article
- Return of results is important to heterogeneous research participants: A single-site survey.Journal of clinical and translational science · 2026Article
- Bridging the gap: Community insights on effectively sharing research findings with the public.Journal of clinical and translational science · 2026Article
- Disseminating Research Results to Raise Awareness About Child Farmworker Health Through Youth-Driven Participatory Infographics.Journal of participatory research methods · 2026Article
- Article
- Article
- Article
- Returning Individualized Wearable Sensor Results to Older Adult Research Participants: A Pilot Study.The journals of gerontology. Series A, Biological sciences and medical sciences · 2025Article
- Ethical considerations for sharing aggregate results from pragmatic clinical trials.Clinical trials (London, England) · 2025Article
- Digital Information Exchange Between the Public and Researchers in Health Studies: Scoping Review.Journal of medical Internet research · 2025Article
- Returning individual wearable sensor results to participants: perspectives on challenges and lessons learned.Frontiers in digital health · 2025Article
- How do study participants want to be informed about study results: Findings from a malaria trial in Cambodia, Ethiopia, Pakistan, and Indonesia.Journal of clinical and translational science · 2025Article
- Dissemination innovation: Using found poetry to return study results to patients and partners facing cancer.PEC innovation · 2024Article
- Nephrologists' Views on a Workflow for Returning Genetic Results to Research Participants.Kidney international reports · 2024Article
- Leveraging artificial intelligence to summarize abstracts in lay language for increasing research accessibility and transparency.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- A qualitative exploration of disseminating research findings among public health researchers in China.BMC public health · 2024Article
- Returning individual research results to participants: Values, preferences, and expectations.Journal of clinical and translational science · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
Abstract
backgroundAlthough research participants are generally interested in receiving results from studies in which they participate, health researchers rarely communicate study findings to participants. The present study was designed to provide opportunity for a broad group of health researchers to describe their experiences and concerns related to sharing results (i.e. aggregate study findings) with research participants.
methodsWe used a mixed-methods concurrent triangulation design, relying on an online survey to capture health researchers' experiences, perceptions and barriers related to sharing study results with participants. Respondents were health researchers who conduct research that includes the consent of human subjects and hold a current appointment at an accredited academic medical institution within the United States. For quantitative data, the analytic strategy focused on item-level descriptive analyses. For the qualitative data, analyses focused on a priori themes and emergent subthemes.
resultsRespondents were 414 researchers from 44 academic medical institutions; 64.5% reported that results should always be shared with participants, yet 60.8% of respondents could identify studies in which they had a leadership role where results were not shared. Emergent subthemes from researchers' reasons why results should be shared included participant ownership of findings and benefits of results sharing to science. Reasons for not sharing included concerns related to participants' health literacy and participants' lack of desire for results. Across all respondents who described barriers to results sharing, the majority described logistical barriers.
conclusionsStudy findings contribute to the literature by documenting researchers' perspectives and experiences about sharing results with research participants, which can inform efforts to improve results sharing. Most respondents indicated that health research results should always be shared with participants, although the extent to which many respondents described barriers to results sharing as well as reported reasons not to share results suggests difficulties with a one-size-fits-all approach to improving results sharing.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.