Here is a new paper from PLOS Medicine. Citation, summary, extracts and comment from me below.
CITATION: Open science must include effective results dissemination to study participants [uncorrected proof]
Ka Hin Tai et al. Published: October 15, 2025
https://doi.org/10.1371/journal.pmed.1004780
SUMMARY
Open science often centers around publications and data transparency. We highlight how and why disseminating results to study participants is essential for maximizing the values and benefits of open science.
EXTRACTS
A recent PLOS Medicine study [3] reviewed 96 studies on global practices, expectations, barriers, and impacts of sharing research results with study participants. The results showed that most participants expect results regardless of outcome, seeing this as recognition of their contribution and a foundation for trust. Researchers described dissemination as a moral obligation, but practices remain inconsistent: although two-thirds of surveyed U.S. researchers thought results should always be shared, only 8% had concrete plans to do so. Common methods included mailed lay summaries or letters, while group presentations and workshops were more often reported in lower-income or community-based settings such as Uganda and Brazil...
To keep up with the evolving expectations, open science practices should also be systematically reviewed and explicitly encouraged by IRBs, including open access publications, responsible data sharing, and dissemination of findings to participants and the public.
COMMENT (NPW): It's curious that the paper does not specifically advocate that research should be published open access. In addition to 'lay summaries or letters... group presentations and workshops', there is a strong case that the research paper itself should be open access so that any interested participants can review the findings in detail. Another question is: 'When they agree to participate, do study participants expect the findings to be made available to everyone through open access publication?' I suspect that most study participants would prefer this, and some might be concerned to think the findings would be locked behind a paywall. What do you think?
HIFA profile: Neil Pakenham-Walsh is coordinator of HIFA (Healthcare Information For All), a global health community that brings all stakeholders together around the shared goal of universal access to reliable healthcare information. HIFA has 20,000 members in 180 countries, interacting in four languages and representing all parts of the global evidence ecosystem. HIFA is administered by Global Healthcare Information Network, a UK-based nonprofit in official relations with the World Health Organization. Email: neil@hifa.org