Patients as Partners in Responsive Research: Methodological Notions for Collaborations in Mixed Research Teams

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.

What Does It Mean to Be a Patient Research Partner? An Ethnodrama

“…This may scare people off. Social learning in context, as the first step in development, can later be accompanied by more individual learning from relevant literature that matches the experiences of the research partner (Abma, Nierse, & Widdershoven, 2009). Part of the learning process includes reflections on the cooperation between the patient researchers and professional researchers.…”

Atitudes e Habilidades Sociais para Trabalho em Equipe: Desenvolvimento de uma Escala

“…Diferentes autores indicam que os grupos proporcionam e incentivam a realização de novos trabalhos (Moura, Leader, Pelletier, & Abrams, 2008), potencializam as relações entre fatores contextuais e a aprendizagem do indivíduo por meio do trabalho em equipe (Williams, Scandura, & Gavin, 2009), além de permitir aplicações práticas dos resultados das pesquisas (Riquelme & Langer, 2010). Outros estudos abordam o modo de organização dos grupos e suas características (Du, 2009;Mauthner & Doucet, 2008;Millward, Banks, & Riga, 2010); fatores que afetam os grupos de pesquisa em relação a sua dinâmica de funcionamento e a sua produtividade (Barbosa, Sasso, & Berns, 2009;Erdmann & Lanzoni, 2008;Pepe et al, 2010); benefícios gerados pela participação (Abma, Nierse, & Widdershoven, 2009;Nierse, Schipper, Zadelhoff, Griendt, & Abma, 2011) e modelos de análise de grupos com a intenção de analisar desempenho (González-Alcaide, Aleixandre-Benavent, & Granda-Orive, 2010;Restrepo & Villegas, 2007;Rizo & Eduardo, 2010;Weijden, Gilder, Groenewegen, & Klasen, 2008).…”

Patients' participation in research projects as partners

“…Finally, patients' involvement may also enhance their sense of empowerment. [1][2][3] Mostly for these reasons, in the recent years some scientific organizations have started defining recommendations for patients' involvement from the beginning of projects and establishing a network of specifically trained research partners. 2,4 To our knowledge, at least seven European patients with lupus, including some of us, are currently involved as partners in international projects covering different research areas.…”

“…The role of the patient as a research partner is emerging. 1 Patient research partners are patients who join research teams on an equal basis with professional researchers, adding the benefit of their experiential knowledge to any phase of the project. 1,2 Recent literature shows that the rationale for actively involving patients in research as partners is mostly based on ethical arguments (i.e.…”

“…1 Patient research partners are patients who join research teams on an equal basis with professional researchers, adding the benefit of their experiential knowledge to any phase of the project. 1,2 Recent literature shows that the rationale for actively involving patients in research as partners is mostly based on ethical arguments (i.e. in a democracy patients have the right to speak for themselves), content (the experience-based knowledge makes research outcomes more relevant and fit better with the context of daily life), political/strategic (legitimacy and chances for implementation increase).…”