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Patient participation as dialogue: setting research agendas.

ABSTRACT: Collaboration with patients in healthcare and medical research is an emerging development. We aimed to develop a methodology for health research agenda setting processes grounded in the notion of participation as dialogue.We conducted seven case studies between 2003 and 2007 to develop and validate a Dialogue Model for patient participation in health research agenda setting. The case studies related to spinal cord injury, neuromuscular diseases, renal failure, asthma/chronic obstructive pulmonary disease, burns, diabetes and intellectual disabilities.The Dialogue Model is grounded in participatory and interactive approaches and has been adjusted on the basis of pilot work. It has six phases: exploration; consultation; prioritization; integration; programming; and implementation. These phases are discussed and illustrated with a case description of research agenda setting relating to burns.The dialogue model appeared relevant and feasible to structure the process of collaboration between stakeholders in several research agenda setting processes. The phase of consultation enables patients to develop their own voice and agenda, and prepares them for the broader collaboration with other stakeholder groups. Challenges include the stimulation of more permanent changes in research, and institutional transitions.

SUBMITTER: Abma TA

PROVIDER: S-EPMC5060528 | biostudies-literature | 2010 Jun

REPOSITORIES: biostudies-literature

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Patient participation as dialogue: setting research agendas.

Abma Tineke A TA Broerse Jacqueline E W JE

Health expectations : an international journal of public participation in health care and health policy 20100601 2

<h4>Background</h4>Collaboration with patients in healthcare and medical research is an emerging development. We aimed to develop a methodology for health research agenda setting processes grounded in the notion of participation as dialogue.<h4>Methods</h4>We conducted seven case studies between 2003 and 2007 to develop and validate a Dialogue Model for patient participation in health research agenda setting. The case studies related to spinal cord injury, neuromuscular diseases, renal failure, ...[more]

PMID: 20536537

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Project description:BackgroundDeliberative dialogues (DDs) are used in policy-making and healthcare research to enhance knowledge exchange and research implementation strategies. They allow organized dissemination and integration of relevant research, contextual considerations, and input from diverse stakeholder perspectives. Despite recent interest in involving patient and public perspectives in the design and development of healthcare services, DDs typically involve only professional stakeholders. A DD took place in May 2019 that aimed to improve the social environment (eg, safety, social inclusion) and decrease social isolation in a rent-geared-to-income housing complex in a large urban community. Tenants of the housing complex, public health, primary care, and social service providers participated. This study aimed to determine how including community tenants impacted the planning and execution of a DD, including adjustments made to the traditional DD model to improve accessibility.MethodsA Core Working Group (CWG) and Steering Committee coordinated with researchers to plan the DD, purposefully recruit participants, and determine appropriate accommodations for tenants. A single mixed-methods case study was used to evaluate the DD process. Meeting minutes, field notes, and researchers' observations were collected throughout all stages. Stakeholders' contributions to and perception of the DD were assessed using participant observation, survey responses, and focus groups (FGs).Results34 participants attended the DD and 28 (82%) completed the survey. All stakeholder groups rated the overall DD experience positively and valued tenants' involvement. The tenants heavily influenced the planning and DD process, including decisions about key DD features. Suggestions to improve the experience for tenants were identified.ConclusionThese findings demonstrate the viability of and provide recommendations for DDs involving public participants. Like previous DDs, participants found the use of engaged facilitators, issue briefs, and off-the-record deliberations useful. Similarly, professional stakeholders did not highly value consensus as an output, although it was highly valued among tenants, as was actionability.

Dataset Information

Patient participation as dialogue: setting research agendas.

Publications

Patient participation as dialogue: setting research agendas.

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