Patients as Partners in Responsive Research: Methodological Notions for Collaborations in Mixed Research Teams
- 1 March 2009
- journal article
- Published by SAGE Publications in Qualitative Health Research
- Vol. 19 (3), 401-415
- https://doi.org/10.1177/1049732309331869
Abstract
Patients are increasingly actively involved in research. We depart from an approach that understands patient participation as dialogue. This idea is grounded in hermeneutic philosophy and responsive research. Patients are engaged in research via dialogues with other stakeholders. New is the inclusion of patients as research partners. Several methodological notions underpin responsive research. In two health research agenda-setting processes (intellectual disability and kidney disease), these notions have been applied and refined for collaboration with research partners in mixed research teams. The findings demonstrate that equal partnerships include involvement in all research activities from beginning to end, a focus on experiential knowledge, mutual learning, openness, and respect. Mutual learning processes help to overcome stereotypes and handle tensions. Other experiences include the financial reimbursement of research partners, and the necessity of an acceptable workload and scheme. The collaboration might then have a surplus value for the research process and for those involved.This publication has 22 references indexed in Scilit:
- From Interdisciplinary to Transdisciplinary Research: A Case StudyQualitative Health Research, 2008
- Patients and professionals as research partners: Challenges, practicalities, and benefitsArthritis Care & Research, 2006
- Patient Participation in Health Research: Research With and for People With Spinal Cord InjuriesQualitative Health Research, 2005
- Sharing StoriesEvaluation & the Health Professions, 2005
- Community-Academic Research on Hard-to-Reach Populations: Benefits and ChallengesQualitative Health Research, 2005
- Stake's responsive evaluation: Core ideas and evolutionNew Directions for Evaluation, 2001
- Focus Group Design and Group Dynamics: Lessons from Deaf and Hard of Hearing ParticipantsAmerican Journal of Evaluation, 1999
- Storytelling as Inquiry in a Mental HospitalQualitative Health Research, 1998
- A Participatory Inquiry ParadigmQualitative Inquiry, 1997
- A Ladder Of Citizen ParticipationJournal of the American Institute of Planners, 1969