» Articles » PMID: 36262007

Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event

Overview
Journal J Particip Med
Publisher JMIR Publications
Specialty Medical Education
Date 2022 Oct 20
PMID 36262007
Authors
Affiliations
Soon will be listed here.
Abstract

Patient engagement occurs when patients actively collaborate in health research in ways that are meaningful to them. Resources to facilitate patient engagement have been developed, but their approach is mainly toward building competencies in the early stages of forming new practices of patient engagement. This paper describes a patient-led collaboration in rheumatology, in the context of an established patient-researcher partnership. Using a case study approach, we report on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board (APAB), which is a group of volunteer advocates living with arthritis based at Arthritis Research Canada. We provide an overview of APAB's decade-long history, describe the planning and the event itself, and report on the challenges encountered, reflections and solutions pertinent for sustaining patient-researcher collaborative practices.

Citing Articles

Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners.

Aouad K, de Wit M, Elhai M, Benavent D, Bertheussen H, Zabalan C Ann Rheum Dis. 2024; 83(10):1268-1277.

PMID: 38724076 PMC: 11503057. DOI: 10.1136/ard-2024-225567.


Patient Engagement in Health Research: Perspectives from Patient Participants.

Easley J, Wassersug R, Matthias S, Tompson M, Schneider N, OBrien M Curr Oncol. 2023; 30(3):2770-2780.

PMID: 36975423 PMC: 10047022. DOI: 10.3390/curroncol30030210.


The Challenges Toward Real-world Implementation of Digital Health Design Approaches: Narrative Review.

Duffy A, Christie G, Moreno S JMIR Hum Factors. 2022; 9(3):e35693.

PMID: 36083628 PMC: 9508664. DOI: 10.2196/35693.


Engaging Youth in the Bipolar Youth Action Project: Community-Based Participatory Research.

Lapadat L, Balram A, Cheek J, Canas E, Paquette A, Michalak E J Particip Med. 2020; 12(3):e19475.

PMID: 33044943 PMC: 7543980. DOI: 10.2196/19475.


Exploring strategies to support medication adherence in patients with inflammatory arthritis: a patient-oriented qualitative study using an interactive focus group activity.

Rai S, Howren A, Wilcox E, Townsend A, Marra C, Avina-Zubieta J Patient Prefer Adherence. 2018; 12:2015-2025.

PMID: 30323571 PMC: 6179243. DOI: 10.2147/PPA.S174672.


References
1.
Domecq J, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N . Patient engagement in research: a systematic review. BMC Health Serv Res. 2014; 14:89. PMC: 3938901. DOI: 10.1186/1472-6963-14-89. View

2.
Guadagnoli E, Ward P . Patient participation in decision-making. Soc Sci Med. 1998; 47(3):329-39. DOI: 10.1016/s0277-9536(98)00059-8. View

3.
Straus S, Tetroe J, Graham I . Knowledge translation is the use of knowledge in health care decision making. J Clin Epidemiol. 2009; 64(1):6-10. DOI: 10.1016/j.jclinepi.2009.08.016. View

4.
van der Eijk M, Nijhuis F, Faber M, Bloem B . Moving from physician-centered care towards patient-centered care for Parkinson's disease patients. Parkinsonism Relat Disord. 2013; 19(11):923-7. DOI: 10.1016/j.parkreldis.2013.04.022. View

5.
Hewlett S, de Wit M, Richards P, Quest E, Hughes R, Heiberg T . Patients and professionals as research partners: challenges, practicalities, and benefits. Arthritis Rheum. 2006; 55(4):676-80. DOI: 10.1002/art.22091. View