Patient-guided research

Patient-guided research prioritizes patient input during each step of the study. This approach builds mutual trust, expands research, and advances health equity, particularly for insufficiently catered to communities.

Advice from authors on searching for information:

When searching for information on research that engages patients and aligns with their priorities, start by exploring resources from organizations such as the Patient-Centered Outcomes Research Institute (PCORI) for guidelines and frameworks. Review literature and case studies on Community-Based Participatory Research (CBPR) to understand best practices for patient involvement. Look for publications and reports from support groups like Cancer Research Advocates in Clinical Trials to gain insights into effective patient-researcher collaboration. Finally, search for patient engagement toolkits and resources provided by healthcare institutions and professional societies.

Organizations, repositories, websites, and other sources where you can find more information:

• The Center for Community Health and Development (University of Kansas): Tools and guidance on participatory approaches and community-based research. Provides resources and tools to support participatory research and community development efforts.
• Cancer Research Advocates Committee (ECOG-ACRIN). Supports the inclusion of patient and community advocates in cancer research to enhance study relevance and patient-centered outcomes.
• Community Advisors on Research Design & Strategies (CARDS). Engages community members in advising and shaping research design and strategies to ensure inclusiveness and relevance.
• National Cancer Institute. Guidelines for Partnering with Research Advocates: Best Practices and Recommendations. Advocates have the potential to advance cancer research by contributing the unique perspective of patient communities. They often have a personal connection to cancer as a caregiver, patient, or survivor, and can represent the perspectives and priorities of a broader patient community. Research advocates are also vital bridges between the research community and the public, helping to preserve community interest, highlight investments, and share progress in cancer research.
• The Patient-Centered Outcomes Research Institute (PCORI) funds research to provide patients, caregivers, and health care providers with evidence-based information needed to make better-informed health care decisions. PCORI focuses on comparative clinical effectiveness research and emphasizes patient-centered approaches to improve outcomes. The Explore Our Portfolio webpage is a searchable database of PCORI-funded research projects focusing on patient-centered comparative effectiveness across various health care topics. The Research Fundamentals webpage provides resource and training materials designed to prepare patients and stakeholders to effectively contribute to the research process. The Engagement Tool and Resource Repository webpage offers a collection of tools, guidelines, and best practices to support meaningful patient and stakeholder engagement in health research.
• National Institutes of Health (NIH): All of Us Research Program. A large-scale initiative aimed at engaging diverse participants to improve health outcomes and personalize medicine.
• Learning for Involvement: NIHR. Pioneers public involvement in health research, offering resources on co-production, impact, and best practices.
• James Lind Alliance: Facilitates Priority Setting Partnerships (PSPs) (UK). Works with patients, caregivers, and clinicians to identify and prioritize the most important research questions.
• Canadian Institutes of Health Research (CIHR): Strategy for Patient-Oriented Research (SPOR) (CA). A Canadian national initiative aimed at integrating patients into every step of the research process.
• European Patients’ Academy on Therapeutic Innovation (EUPATI): Educational resources on patient engagement (EU). Provides comprehensive educational resources for patients involved in the development and research of medicines.
• COMET Initiative: Core Outcome Measures in Effectiveness Trials. Engages patients in defining important outcomes in clinical trials, standardizing measures that matter most to patients.
• Health Expectations Journal: Peer-reviewed articles on public and patient involvement. Publishes research and articles focused on public and patient involvement in health and social care research.
• Research Involvement and Engagement (Open Access Journal): Co-produced research publications. Features research co-produced with patients and public contributors, highlighting collaborative research efforts.
• PaCER (CA): Trains patients to become researchers and lead studies. Engages and trains patients to conduct and lead research, promoting patient-driven study initiatives.

Challenges you may encounter while searching for information:

Limited access to full texts, variability in terminology, and the overwhelming volume of broad search results.

Articles, books, and other publications in translational science using the benefit:

• Ahmed OM, Applebaum SS, Ahmad M, Ahmed DM, Juthani P, Nwanyanwu K. Needs assessment and patient-guided development of a video-based diabetic retinopathy patient education tool. Health Education Journal. 2024;83(6):587-597. https://doi.org/10.1177/00178969241258818 (Original work published 2024).
• Tiemens DK, Nugteren J, Leenders E, et al. Patient engagement in the design of clinical research in Noonan syndrome spectrum disorders: a scoping review. Orphanet J Rare Dis. 2021; 16, 449. doi: 10.1186/s13023-021-02083-x.
• Elliott MJ, McCarron TL, Schick‐Makaroff K, Getchell L, Manns B, Fernandez N. The dynamic nature of patient engagement within a Canadian patient‐oriented kidney health research network: Perspectives of researchers and patient partners. Health Expectations. 2023;26(2):905-918. doi: 10.1111/hex.13716.
• Santana MJ, Duquette D, Fairie P, et al. Patient-identified priorities for successful partnerships in patient-oriented research. Res Involv Engagem . 2022;8(49). doi: 10.1186/s40900-022-00384-4.
• Jamieson K, Ogedengbe O, Naik AD, Kiefer L, Tak C, Atkins C, Woodall T. Implementation of patient priorities-aligned care in a home-based primary care program. Journal of the American Pharmacists Association. 2024; 64(1): 96-103. doi: 10.1016/j.japh.2023.10.027.