ArticleResearch involvement and engagement2020
Researchers, patients, and other stakeholders' perspectives on challenges to and strategies for engagement.
Article in Research involvement and engagement, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 67 papers, 1 of them a synthesis 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
67 citing papers in PubMed, 1 synthesis or guideline pooled it, 128 citations in OpenAlex.
- Patient and Patient Group Engagement in Cancer Clinical Trials: A Stakeholder Charter.Current oncology (Toronto, Ont.) · 2021Guideline
- Promising Patient-Engagement Practices Used by National Research Networks at the US Veterans Health Administration: Perspectives of Veterans, Staff, and Research Leaders.Learning health systems · 2026Article
- Patient Engagement Activities and Infrastructure Among US Veterans Affairs National Research Networks.Journal of general internal medicine · 2026Article
- Contributions of Community Advisory Board and Experience of Study Participants in TB/MDR-TB Clinical Trial Management in Addis Ababa, Ethiopia: A Qualitative Study.Developing world bioethics · 2026Article
- Patients as Co-Researchers in Oncology: A Qualitative Exploration of Participatory Governance.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Reducing Time Off Work Through an Integrated Care Pathway for Shoulder Injuries: Evidence from a Workers' Compensation Cohort Study.Journal of occupational rehabilitation · 2026Article
- The community representative council of the National Drug Abuse Treatment Clinical Trials Network: Co-design and early impact.Journal of substance use and addiction treatment · 2026Article
- Setting the rules of engagement: a qualitative study of challenges and enablers of engaged research in a South African emergency care system.Research involvement and engagement · 2026Article
- Development of a Diabetes Rural Stakeholder Research Team and Patient-Centered Research Agenda.OTJR : occupation, participation and health · 2026Article
- Advancing digital equity: a qualitative case study using the Implementation Research Logic Model.Implementation science communications · 2026Article
- PCORnet®: A National Resource for Patient-centered Health Research.Medical care · 2026Article
- Consumer Engagement in Chronic Conditions Research: An Integrated Framework Informed by Recognition Theory.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Strategies for engaging individuals with traumatic brain injury and cognitive impairment in virtual research settings.Research involvement and engagement · 2026Article
- Article
- Creating the conditions for meaningful and effective PPIE in community-based public health research: learning from a UK-wide lived experience panel.Research involvement and engagement · 2025Article
- Supporting consumer engagement in health research about chronic conditions: a scoping review of evidence-based resources.Research involvement and engagement · 2025Review
- Patient and public involvement in research: a survey on experience, opinions and training needs of gynecologic oncologists in two collaborative groups in Italy.Research involvement and engagement · 2025Article
- Engaging Essential Patient Support Personnel in Research as Patient Partners: A Survey Study.Risk management and healthcare policy · 2025Article
- Measuring and Demonstrating the Value of Patient Engagement Across the Medicines Lifecycle: A Patient Engagement Impact Measurement Framework.The patient · 2025Article
- Citizen science approaches in the development of post-stroke physical activity interventions: A scoping review.PloS one · 2025Article
7 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThere is growing interest in patient and stakeholder engagement in research, yet limited evidence about effective methods. Since 2012, the Patient-Centered Outcomes Research Institute (PCORI) has funded patient-centered comparative effectiveness research with a requirement for engaging patients and other stakeholders as research partners in study planning, conduct, and dissemination. This requirement, unique among large healthcare research funders in the US, provides an opportunity to learn about challenges encountered and specific strategies used by PCORI-funded study teams. The primary objective of this study is to describe -- from the perspective of PCORI investigators and research partners-the most common engagement challenges encountered in the first two years of the projects and promising strategies to prevent and overcome these challenges.
methodsDescriptive information about investigators, partners, and their engagement was collected from investigators via annual (
resultsInvestigators and partners most often described engagement challenges in three domains: (1) infrastructure to support engagement, (2) building relationships, and (3) maintaining relationships. Infrastructure challenges related to financial and human resources, including funding support and dedicated staff, identifying diverse groups of partners, and partners' logistical needs. Challenges for both building and maintaining relationships encompass a variety of aspects of authentic, positive interactions that facilitate mutual understanding, full participation, and genuine influence on the projects. Strategies to prevent or mitigate engagement challenges also corresponded overall to the same three domains. Both groups typically described strategies more generally, with applicability to a range of challenges rather than specific actions to address only particular challenges.
conclusionMeaningful engagement of patients and other stakeholders comes with challenges, as does any innovation in the research process. The challenges and promising practices identified by these investigators and partners, related to engagement infrastructure and the building and maintenance of relationships, reveal actionable areas to improve engagement, including organizational policies and resources, training, new engagement models, and supporting engagement by viewing it as an investment in research uptake and impact.
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Identifiers
What OpenQuestion holds
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.