Noncommercial US Funders’ Policies on Trial Registration, Access to Summary Results, and Individual Patient Data Availability

Whitlock, Evelyn P; Dunham, Kelly M.; DiGioia, Kimberly; Lazowick, Emily; Gleason, Theresa; Atkins, David C.

doi:10.1001/jamanetworkopen.2018.7498

“…Two studies using similar methods evaluated trial transparency policies (i.e., those related to trial registration, access to summary results, individual data availability) for non-commercial health research funders globally (n=18) 34 and in the USA (n=9) 36 . After accounting for three common funders across studies, 21 of 24 (87.5%) funders (16 of which are represented in our study) either required or supported publication or registration of trial results (neither study or their available data distinguished between publication or registration).…”

Section: Discussionmentioning

confidence: 99%

“…While there are some inequities in its coverage (e.g. public funders were selected from only G20 countries; paucity of funders from low income countries), the list is likely the most comprehensive source of global health research funder expenditure information in existence (personal communication, Dr. Beverley Holmes, CEO, Michael Smith Foundation for Health Research) and has been used to construct samples in at least two other studies 34 , 36 . This study excludes commercial funders since their expenditure data are not publicly or readily available.…”

Section: Methodsmentioning

confidence: 99%

Top health research funders’ guidance on selecting journals for funded research

Shamseer

¹

,

Cobey

²

,

Page

³

et al. 2021

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Background: Funded health research is being published in journals that many regard as “predatory”, deceptive, and non-credible. We do not currently know whether funders provide guidance on how to select a journal in which to publish funded health research. Methods: We identified the largest 46 philanthropic, public, development assistance, public-private partnership, and multilateral funders of health research by expenditure, globally as well as four public funders from lower-middle income countries, from the list at https://healthresearchfunders.org. One of us identified guidance on disseminating funded research from each funders’ website (August/September 2017), then extracted information about selecting journals, which was verified by another assessor. Discrepancies were resolved by discussion. Results were summarized descriptively. This research used publicly available information; we did not seek verification with funding bodies. Results: The majority (44/50) of sampled funders indicated funding health research. 38 (of 44, 86%) had publicly available information about disseminating funded research, typically called “policies” (29, 76%). Of these 38, 36 (95%) mentioned journal publication for dissemination of which 13 (36.11%) offer variable guidance on selecting a journal, all of which relate to the funder’s open access mandate. Six funders (17%) outlined publisher requirements or features by which to select a journal. One funder linked to a document providing features of journals to look for (e.g. listed in the Directory of Open Access Journals) and to be wary of (e.g., no journal scope statement, uses direct and unsolicited marketing). Conclusions: Few funders provided guidance on how to select a journal in which to publish funded research. Funders have a duty to ensure that the research they fund is discoverable by others. This research is a benchmark for funder guidance on journal selection prior to the January 2021 implementation of Plan S (a global, funder-led initiative to ensure immediate, open access to funded, published research).

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“…Two studies using similar methods evaluated trial transparency policies (i.e., those related to trial registration, access to summary results, individual data availability) for non-commercial health research funders globally (n=18) 32 and in the USA (n=9) 34 . After accounting for three common funders across studies, 21 of 24 (87.5%) funders (16 of which are represented in our study) either required or supported publication or registration of trial results (neither study or their available data distinguished between publication or registration).…”

Section: Discussionmentioning

confidence: 99%

“…While there are some inequities in its coverage (e.g. public funders were selected from only G20 countries; paucity of funders from low income countries), the list is likely the most comprehensive source of global health research funder expenditure information in existence (personal communication, Dr. Beverley Holmes, Michael Smith Foundation for Health Research) and has been used to construct samples in at least two other studies 32,34 . This study excludes commercial funders since their expenditure data are not publicly or readily available.…”

Section: Data Sourcementioning

confidence: 99%

Top health research funders’ guidance on selecting journals for funded research

Shamseer¹,

Cobey²,

Page³

et al. 2021

View full text Add to dashboard Cite

Background: Funded health research is being published in journals that many regard as “predatory”, deceptive, and non-credible. We do not currently know whether funders provide guidance on how to select a journal in which to publish funded health research. Methods: We identified the largest 46 philanthropic, public, development assistance, public-private partnership, and multilateral funders of health research by expenditure, globally as well as four public funders from lower-middle income countries, from the list at https://healthresearchfunders.org. One of us identified guidance on disseminating funded research from each funders’ website (August/September 2017), then extracted information about selecting journals, which was verified by another assessor. Discrepancies were resolved by discussion. Results were summarized descriptively. This research used publicly available information; we did not seek verification with funding bodies. Results: The majority (44/50) of sampled funders indicated funding health research. 38 (of 44, 86%) had publicly available information about disseminating funded research, typically called “policies” (29, 76%). Of these 38, 36 (95%) mentioned journal publication for dissemination of which 13 (36.11%) offer variable guidance on selecting a journal, all of which relate to the funder’s open access mandate. Six funders (17%) outlined publisher requirements or features by which to select a journal. One funder linked to a document providing features of journals to look for (e.g. listed in the Directory of Open Access Journals) and to be wary of (e.g., no journal scope statement, uses direct and unsolicited marketing). Conclusions: Few funders provided guidance on how to select a journal in which to publish funded research. Funders have a duty to ensure that the research they fund is discoverable by others. This research is a benchmark for funder guidance on journal selection prior to the January 2021 implementation of Plan S (a global, funder-led initiative to ensure immediate, open access to funded, published research).

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“…Prompted by these and related activities, the biomedical research community around the world has begun considering best practices to ensure value in publicly-funded research. As key contributors 7 , research funders are encouraged to audit and update their own policies and practice, even as external assessments of funders are also undertaken 8, 9 .…”

Section: Introductionmentioning

confidence: 99%

Examining the role of funders in ensuring value and reducing waste in research: An organizational case-study of the Patient-Centered Outcomes Research Institute

Whitlock

¹

,

Selby

²

,

Dunham

³

et al. 2019

F1000Res

Self Cite

2

0

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International experts have recommended actions that funders can take to improve the value of research investments. They state that self-assessment and public sharing are the basis for accountability and improvement. We examined our policies and practice to determine the extent to which the Patient-Centered Outcomes Research Institute’s (PCORI) policies and practices as a research funder align with international best practice recommendations. A self-audit of current policies and practice against 17 recommendations and 35 sub-recommendations representing five major stages of research production, based on adapted methods used for self-assessment by another funder, was performed. Fit of existing PCORI policies and practices with 35 sub-recommendations, qualitative assessment of adequacy (area of strength; area of partial strength; area of growth; not applicable) for 17 recommendations for five stages of research production was assessed. Of the 17 recommendations, 15 were applicable to PCORI’s research mission and focus. PCORI has policies and practices in place for all elements of six recommendations (“area of strength”) and policies that address each element but with some still in active development for three (“area of partial strength”). PCORI is partially addressing six of the 15 relevant recommendations (“area of growth”). Areas for growth include making study protocols publicly available, improving policies on data sharing, and enhancing collaboration with other funders to reduce redundant funding. A voluntary consortium of international funders is underway to encourage further progress, including additional self-assessment and public sharing for accountability. These findings indicate PCORI has undertaken efforts to align its funding practices with international recommendations to ensure the value of public dollars invested in research. Further efforts will likely require additional coordination and collaboration between funders and stakeholders.

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Noncommercial US Funders’ Policies on Trial Registration, Access to Summary Results, and Individual Patient Data Availability

Cited by 14 publications

References 14 publications

Top health research funders’ guidance on selecting journals for funded research

Top health research funders’ guidance on selecting journals for funded research

Top health research funders’ guidance on selecting journals for funded research

Examining the role of funders in ensuring value and reducing waste in research: An organizational case-study of the Patient-Centered Outcomes Research Institute

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