Patients’ early engagement in research proposal development (PEER-PD): patients guiding the proposal writing
Abstract
Patient engagement often starts after research funding is secured with little or no involvement of patients in the proposal development phase. This paper compares three levels of patient engagement and describes patients’ early engagement in research proposal development process and its contemporary relevance to clinical and translational research. Authentic patient engagement is illustrated using an example of an ongoing pragmatic clinical trial. The paper also addresses key patient considerations and questions that have an impact on the proposal development. The final section presents strategies to overcome challenges to the patients’ early engagement in research proposal development approach from the perspectives of both patients and researchers. Although the examples are from comparative effectiveness research, strategies discussed can be applied to all clinical and translational research.
Supplementary Material
File (suppl_file.docx)
- Download
- 24.10 KB
References
Papers of special note have been highlighted as: • of interest; •• of considerable interest
1.
Corbie-Smith G, Stephen BT, St George DM. Distrust, race, and research. Arch. Intern. Med. 162(21), 2458–2463 (2002).
2.
George S, Duran N, Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. Am. J. Public Health 104(2), e16–e31 (2014).
3.
Lee SB, Zak A, Iversen MD, Polletta VL, Shadick NA, Solomon DH. Participation in clinical research registries: a focus group study examining views from patients with arthritis and other chronic illnesses. Arthritis Care Res. 68(7), 974–980 (2016).
4.
Mullins CD, Abdulhalim AM, Lavallee DC. Continuous patient engagement in comparative effectiveness research. JAMA 307(15), 1587–1588 (2012).
•• Presents a ten-step process for comparative effectiveness research (CER) projects and describes how patient engagement can guide CER toward patient-centered outcomes research and offers suggestions for the process and purpose of patient engagement across the ten steps.
5.
Domecq JP, Prutsky G, Elraiyah T et al. Patient engagement in research: a systematic review. BMC Health Serv. Res. 14(1), 89 (2014).
•• Discusses best ways to identify patient representatives and to engage them in designing and conducting research with overview of observed benefits and barriers
6.
Nilsen ES, Myrhaugh HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice and patient information material. Cochrane Database Syst. Rev. 3, CD004563 (2006).
7.
Hewlett S, Wit MD, Richards P et al. Patients and professionals as research partners: challenges, practicalities, and benefits. Arthritis Care Res. 55(4), 676–80 (2006).
8.
Chernew ME, Rosen B, Fendrick AM. Value-based insurance design. Health Affairs 26(2), w195–w203 (2007).
9.
Bae JM. Value-based medicine: concepts and application. Epidemiol. Health. 37, e2015014 (2015).
10.
Concannon TW, Fuster M, Saunders T et al. A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. J. Gen. Intern. Med. 29(12), 1692–1670 (2014).
11.
Brett J, Staniszewska S, Mockford C et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 17(5), 637–650 (2012).
12.
PCORI (Patient-Centered Outcomes Research Institute). The value of engagement (2018). www.pcori.org/about-us/our-programs/engagement/value-engagement.
• Reiterates the value of patient engagement and the future of science engagement
13.
Ellis LE, Kass NE. Patient engagement in patient-centered outcomes research: challenges, facilitators, and actions to strengthen the field. J. Comp. Eff. Res. 6(4), 363–373 (2017).
14.
Lavallee DC, Gore JL, Lawrence SO et al. Initiative to Support Patient Involvement in Research (INSPIRE): findings from Phase I interviews. (2016). www.becertain.org/sites/default/files/INSPIRE%20Phase%20I%20Report%20Final%202016.09.30.pdf.
15.
PCORI (Patient-Centered Outcomes Research Institute). Engagement rubric for applicants. (2016). www.pcori.org/sites/default/files/Engagement-Rubric.pdf.
• Provides guidance to Patient-Centered Outcomes Research Institute (PCORI) awardees and those planning or conducting research, merit reviewers, engagement/program officers, and interested patients, caregivers, patient/caregiver organizations and other stakeholders, regarding engagement in the conduct of research
16.
PCORI (Patient-Centered Outcomes Research Institute). Financial compensation of patients, caregivers, and patient/caregiver organizations engaged in PCORI-funded research as engaged research partners (2015). www.pcori.org/sites/default/files/PCORI-Compensation-Framework-for-Engaged-Research-Partners.pdf.
17.
NIH – National Center for Advancing Translational Sciences. Clinical and Translational Science Award Program (2018). https://ncats.nih.gov/ctsa.
18.
De Las Nueces D, Hacker K, DiGirolamo A, Hicks LS. A systematic review of community-based participatory research to enhance clinical trials in racial and ethnic minority groups. Health Serv. Res. 47(3pt2), 1363–1386 (2012).
19.
Sofolahan-Oladeinde Y, Mullins CD, Baquet CR. Using community-based participatory research in patient-centered outcomes research to address health disparities in under-represented communities. J. Comp. Eff. Res. 4(5), 515–523 (2015).
20.
Jones L, Wells K. Strategies for academic and clinician engagement in community-participatory partnered research. JAMA 297(4), 407–410 (2007).
21.
PCORI (Patient-Centered Outcomes Research Institute). What we mean by engagement. (2018). www.pcori.org/engagement/what-we-mean-engagement.
22.
CIHR (Canadian Institutes of Health Research). Strategy for patient-oriented research (SPOR) SUPPORT unit training and capacity development opportunities (2018). www.cihr-irsc.gc.ca/e/50896.html.
23.
Johnson DS, Bush MT, Brandzel S, Wernli KJ. The patient voice in research – evolution of a role. Res. Involv. Engagem. 2, 6 (2016).
24.
Bekelman J. Comparing two types of radiation treatments for patients with breast cancer – the RadComp study. Patient-Centered Outcomes Research Institute (PCOR) (2018). www.pcori.org/research-results/2015/comparing-two-types-radiation-treatment-patients-breast-cancer-radcomp-study.
25.
MacDonald SM. Proton therapy for breast cancer: getting to the heart of the matter. Int. J. Radiat. Oncol. Biol Phys. 95(1), 46–48 (2016).
26.
Ladeji O. Multi-stakeholder engagement in health services research. J. Comp. Eff. Res. 7(6), 517–521 (2018).
27.
Bonevski B, Randell M, Paul C et al. Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med. Res. Methodol. 14(1), 42 (2014).
Information & Authors
Information
Published In
Copyright
© 2019 Nabil Natafgi.
History
Received: 19 November 2018
Accepted: 12 January 2019
Published online: 5 April 2019
Keywords:
Topics
Authors
Metrics & Citations
Metrics
Article Usage
Article usage data only available from February 2023. Historical article usage data, showing the number of article downloads, is available upon request.
Citations
How to Cite
Patients’ early engagement in research proposal development (PEER-PD): patients guiding the proposal writing. (2019) Journal of Comparative Effectiveness Research. DOI: 10.2217/cer-2018-0129
Export citation
Select the citation format you wish to export for this article or chapter.
Citing Literature
- Caroline Meyering, Emily Hickmann, Advancing Patient-Centered Healthcare: A Systematic Review of Patient Engagement Strategies and Opportunities, People, Society, and Ethical Challenges of Information Systems, 10.1007/978-3-032-08486-6_27, (397-412), (2026).
- Tom Norris, Ella Tetrault, Muskaan Mehra, Karisma Suchak, Lindsey Ross, Jan Ballesteros, Brennan M.R. Spiegel, American Medical Extended Reality Association Expert Consensus: Best Practices for Patient and Public Involvement in Medical Extended Reality Research, Journal of Medical Extended Reality, 10.1177/29941520251377071, 2, 1, (2025).
- Angela Shierk, Nancy Clegg, Daralyn Fulton, Lindsay Miles, Vanessa Hunt, Mauricio R. Delgado, Janet Prvu Bettger, Heather Roberts, Occupation-Based Collaborator Engagement in Research: Developing a Cerebral Palsy Task Force, OTJR: Occupational Therapy Journal of Research, 10.1177/15394492251367249, (2025).
- Ahlam Zidan, Laurie Snider, Jaclyn Sions, Kristen Donlevie, Alexa Cirillo, Verity Pacey, Noémi Dahan-Oliel, Content validity of mobility measures in arthrogryposis multiplex congenita: engaging clinicians and people with lived experience, Frontiers in Rehabilitation Sciences, 10.3389/fresc.2025.1576267, 6, (2025).
- Sarah R. Prowse, Shaun Treweek, Miriam Brazzelli, Hanne Bruhn, Improving Trial Informativeness: A Rapid Review of Global Research on How to Ensure Trials Are Useful, Journal of Evaluation in Clinical Practice, 10.1111/jep.70147, 31, 4, (2025).
- Laura M Kernan, Monica Baczko Pearl, Adina Harri, Carol A Lambourne, Robert Schlegel, C. McCollister Evarts, Mary Beth Crummer, Conrad Persels, Nancy Mullen, Vincent D Pellegrini, The impact of a patient advisory board on a clinical comparative effectiveness trial: a comparison of patient and researcher perspectives, Journal of Comparative Effectiveness Research, 10.57264/cer-2024-0050, 14, 3, (2025).
- Maclean Thiessen, Kellie Jewitt, Raina Stromberg, Janelle Marie Lamontagne, Genevieve Richardson Tanguay, Annette Albo, Chantale Thurston, Diana E McMillan, Constructing TheKeep.Ca With Thrivers of Cancer in Manitoba, Canada, in Support of Enhancing Patient Engagement: Protocol for a Pragmatic Multimethods Study, JMIR Research Protocols, 10.2196/63597, 14, (e63597), (2025).
- Madison Healey, Julia Craig, Sarah Thomas, Jillian Tizzard, Kelsey Puddister, Erin L McGowan, Laurie K Twells, Katie P Wadden, Co-creation of a qualitative fertility research study to understand waiting time experiences through patient engagement, Research Involvement and Engagement, 10.1186/s40900-024-00665-0, 10, 1, (2024).
- Ann Blair Kennedy, Ariana Mitcham, Katherine Parris, Faith Albertson, Luis Sanchez Ferrer, Conor O'Boyle, Maushmi K. Patel, Tracey Gartner, Amy M. Broomer, Evan Katzman, Jeanette Coffin, Jennifer T. Grier, Nabil Natafgi, Wonderings to research questions: Engaging patients in long COVID research prioritization within a learning health system , Learning Health Systems, 10.1002/lrh2.10410, 8, S1, (2024).
- Furqan A. Butt, Mohammad Fawzy, Bassel H. Al Wattar, Aurora Bueno-Cavanillas, Khalid S. Khan, Yacoub Khalaf, The randomized clinical trial trustworthiness crisis, Middle East Fertility Society Journal, 10.1186/s43043-023-00161-7, 29, 1, (2024).