Evidence map›Paper›PMID 30081919›Full record

ArticleHealth research policy and systems2018

Public involvement in health research systems: a governance framework.

Fiona Alice Miller, Sarah J Patton, Mark Dobrow, Whitney Berta

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Health research policy and systems, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
13citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

13 citing papers in PubMed, 1 synthesis or guideline pooled it.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors.

Fiona Alice MillerInstitute of Health Policy, Management and Evaluation, University of Toronto, 155 College Street, 4th Floor, Toronto, ON, M5T 3M6, Canada. fiona.miller@utoronto.ca.ORCID http://orcid.org/0000-0003-4953-6255
Sarah J PattonInstitute of Health Policy, Management and Evaluation, University of Toronto, 155 College Street, 4th Floor, Toronto, ON, M5T 3M6, Canada.
Mark DobrowInstitute of Health Policy, Management and Evaluation, University of Toronto, 155 College Street, 4th Floor, Toronto, ON, M5T 3M6, Canada.
Whitney BertaInstitute of Health Policy, Management and Evaluation, University of Toronto, 155 College Street, 4th Floor, Toronto, ON, M5T 3M6, Canada.

Funding

Ontario SPOR (Strategy for Patient Oriented Research) Support Unit N/A
6 · The paper itself

Abstract

backgroundGrowing interest in public involvement in health research has led to organisational and policy change. Additionally, an emerging body of policy-oriented scholarship has begun to identify the organisational and network arrangements that shape public involvement activity. Such developments suggest the need to clearly conceptualise and characterise public involvement in health research in terms of governance.

methodsWe drew on an established health research system framework to analyse governance functions related to public involvement, adapting scoping review methods to identify evidence from a corpus of journal papers and policy reports. We drew on the logics of aggregation and top down configuration, using a qualitative interpretive approach to combine and link findings from different studies into framework categories.

resultsWe identified a total of 32 scholarly papers and 13 policy reports (n = 45 included papers) with relevance to governance for public involvement. Included papers were broadly consonant in identifying the need for activity to specify and support public involvement across all four governance functions of stewardship, financing, creating and sustaining resources, and research production and use. However, different visions for public involvement, and the activity required to implement it and achieve impact, were particularly evident with respect to the stewardship function, which seeks to set overall directions for research while addressing the potentially competing demands of a system's many constituents.

conclusionsA governance perspective has considerable value for public involvement in health research systems, supporting efforts to coordinate and institutionalise the burgeoning public involvement enterprise. Furthermore, it highlights challenges for what is, ultimately, a highly political intervention, suggesting that diverse publics must be both involved within health research systems and enrolled as governors of them.

Indexed as

Community ParticipationGovernmentHealth PolicyHealth PrioritiesPolicy MakingResearchStakeholder ParticipationBiomedical ResearchGovernment ProgramsHumansCommunity-based researchHealth research systemsPublic involvementResearch governanceResearch policy

Identifiers

PMID30081919
PMCPMC6080531

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.