ArticleBMC medical research methodology2021
Shifting research culture to address the mismatch between where trials recruit and where populations with the most disease live: a qualitative study.
Article in BMC medical research methodology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 2 of them syntheses 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- What are the Experiences of and Interventions for Adult Survivors of Childhood Sexual Abuse in South Asia? A Systematic Review and Narrative Synthesis.Trauma, violence & abuse · 2024Pooled it
- A systematic review examining socioeconomic factors in trials of interventions for men that report weight as an outcome.Obesity reviews : an official journal of the International Association for the Study of Obesity · 2022Pooled it
- Screening for atrial fibrillation with or without general practice involvement: a controlled study.BMC primary care · 2025Trial
- Trial
- Balancing solidarity, normality and trust: reasons for (non-)participation in an injectable HIV antiretroviral therapy study in the United Kingdom.International journal for equity in health · 2025Article
- Inequalities in geographic barriers and patient representation in lymphoma clinical trials across England.British journal of haematology · 2025Article
- Article
- Creating a health informatics data resource for hearing health research.BMC medical informatics and decision making · 2024Article
- Ensuring equitable access, engagement and ability of socially and ethnically diverse participants to benefit from health promotion programmes: a qualitative study with parent carers of disabled children.Frontiers in public health · 2024Article
- Representativeness in health research studies: an audit of Greater Manchester Clinical Research Network studies between 2016 and 2021.BMC medicine · 2023Article
- What would it take to meaningfully attend to ethnicity and race in health research? Learning from a trial intervention development study.Sociology of health & illness · 2022Article
- Infrastructure challenges to doing health research "where populations with the most disease live" in Covid times-a response to Rai et al. (2021).BMC medical research methodology · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundResearch participation is beneficial to patients, clinicians and healthcare services. There is currently poor alignment between UK clinical research activity and local prevalence of disease. The National Institute of Health Research is keen to encourage chief investigators (CIs) to base their research activity in areas of high patient need, to support equity, efficiency and capacity building. We explored how CIs choose sites for their trials and suggest ways to encourage them to recruit from areas with the heaviest burden of disease.
methodsQualitative, semi-structured telephone interviews with a purposive sample of 30 CIs of ongoing or recently completed multi-centre trials, all of which were funded by the UK National Institute of Health Research.
resultsCIs want to deliver world-class trials to time and budget. Approaching newer, less research-active sites appears risky, potentially compromising trial success. CIs fear that funders may close the trial if recruitment (or retention) is low, with potential damage to their research reputation. We consider what might support a shift in CI behaviour. The availability of 'heat maps' showing the disparity between disease prevalence and current research activity will help to inform site selection. Embedded qualitative research during trial set up and early, appropriate patient and public involvement and engagement can provide useful insights for a more nuanced and inclusive approach to recruitment. Public sector funders could request more granularity in recruitment reports and incentivise research activity in areas of greater patient need. Accounts from the few CIs who had 'broken the mould' suggest that nurturing new sites can be very successful in terms of efficient recruitment and retention.
conclusionWhile improvements in equity and capacity building certainly matter to CIs, most are primarily motivated by their commitment to delivering successful trials. Highlighting the benefits to trial delivery is therefore likely to be the best way to encourage CIs to focus their research activity in areas of greatest need.
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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.