Evidence map›Paper›PMID 41840453›Full record

ReviewResearch involvement and engagement2026

A meta-review of patient engagement, shared decision-making, and factors influencing equity-deserving populations' participation in clinical trials.

Tamara L Morgan, Kelly Carroll, Anosha Waqar, Natasha Hudek, Meena Mosa, Dawn P Richards, Kim Meeking, Marisa Granieri, Maureen Smith, Murray Walz and 5 more

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Research involvement and engagement, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–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

1 citing paper in PubMed.

  1. 'A No-Brainer, but Not a Simple Decision': A Qualitative Study of Patient Experiences of Tissue Donation for Research in Rare Craniospinal Tumour Pathways.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
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

15 authors.

Tamara L MorganMethodological and Implementation Research program, Ottawa Hospital Research Institute, General Campus, Ottawa, ON, Canada. tamorgan@ohri.ca.
Kelly CarrollMethodological and Implementation Research program, Ottawa Hospital Research Institute, General Campus, Ottawa, ON, Canada.
Anosha WaqarMethodological and Implementation Research program, Ottawa Hospital Research Institute, General Campus, Ottawa, ON, Canada.
Natasha HudekMethodological and Implementation Research program, Ottawa Hospital Research Institute, General Campus, Ottawa, ON, Canada.
Meena MosaMethodological and Implementation Research program, Ottawa Hospital Research Institute, General Campus, Ottawa, ON, Canada.
Dawn P RichardsClinical Trials Ontario, Toronto, ON, Canada.
Kim MeekingQueering Cancer, Centreville, NS, Canada.
Marisa GranieriCollege of Lived Experience Member, Clinical Trials Ontario, Toronto, ON, Canada.
Maureen SmithCollege of Lived Experience Member, Clinical Trials Ontario, Toronto, ON, Canada.
Murray WalzCollege of Lived Experience Member, Clinical Trials Ontario, Toronto, ON, Canada.
Cole EtheringtonMethodological and Implementation Research program, Ottawa Hospital Research Institute, General Campus, Ottawa, ON, Canada.
Susan MarlinClinical Trials Ontario, Toronto, ON, Canada.
Katie GilliesAberdeen Centre for Evaluation (ACE), School of Medicine, Medical Sciences and Nutrition, University of Aberdeen, Aberdeen, UK.
Justin PresseauMethodological and Implementation Research program, Ottawa Hospital Research Institute, General Campus, Ottawa, ON, Canada.
Jamie C BrehautMethodological and Implementation Research program, Ottawa Hospital Research Institute, General Campus, Ottawa, ON, Canada. jbrehaut@ohri.ca.

Funding

CIHR PJT-169055
6 · The paper itself

Abstract

backgroundMany equity-deserving populations, including those facing structural health inequities, lack support to participate in clinical trials while facing barriers to participation. Two approaches—patient engagement (PE) and shared decision-making (SDM)—can help trialists better understand and address such barriers. PE can improve the relevance of trials to silenced communities while SDM can align participation decisions among socially disadvantaged groups with their values, needs, and preferences, which may help overcome health inequities. Further, Indigenous community engagement is vital to address the effects of colonialism and promote Indigenous self-determination and health equity. The extent to which existing reviews have identified common barriers, enablers, and strategies across equity-deserving groups and discussed PE and SDM concepts is unclear. PURPOSE: (1) To describe which equity-deserving populations have been the focus of reviews on clinical trial participation and which barriers, enablers, and strategies are relevant to them (2) to explore the extent to which PE and SDM are discussed in these reviews.

methodsWe searched for English-language reviews (including any study design) summarizing trial participation barriers, enablers, and/or strategies among equity-deserving populations in five peer-reviewed databases. We coded data on the (1) equity-deserving population(s) of focus, (2) barriers, enablers, or interventions/strategies mentioned, (3) PE reported, (4) Indigenous community engagement reported, and (5) SDM outcomes discussed.

resultsFindings from 100 reviews showed that some equity-deserving populations have been represented more than others (e.g., 76% on racially, ethnically, culturally, or linguistically diverse populations; 29% on sex and gender populations; 2% on educationally disadvantaged populations). More reviews described barriers (84%) than enablers (31%) or strategies to improve participation (69%). Forty-five reviews (45%) reported PE while 11 (11%) reported Indigenous community engagement. Many reviews (74%) mentioned SDM outcomes (i.e., 9/11 [81.8%] outcomes from Gillies et al.’s internationally agreed core outcome set); however, few reviews (29%) discussed SDM outcomes in detail.

conclusionsOur findings suggest that PE and SDM could be more broadly applied among multiple equity-deserving groups to better serve disadvantaged communities. We advocate for an expanded focus on less-researched equity-deserving groups, improved PE reporting, prioritization of patient outcomes, and engagement with patients and Indigenous communities.

Indexed as

BarriersCommunity engagementDiversityEnablersEquityEquity-deserving populationInclusionIndigenous engagementPatient and public involvementShared decision-makingStrategiesUnderserved population

Identifiers

PMID41840453
PMCPMC13104246

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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.