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Stakeholder Participation for Legitimate Priority Setting: A Checklist.

ABSTRACT: Accountable decision-makers are required to legitimize their priority setting decisions in health to members of society. In this perspective we stress the point that fair, legitimate processes should reflect efforts of authorities to treat all stakeholders as moral equals in terms of providing all people with well-justified, reasonable reasons to endorse the decisions. We argue there is a special moral concern for being accountable to those who are potentially adversely affected by decisions. Health authorities need to operationalize this requirement into real world action. In this perspective, we operationalize five key steps in doing so, in terms of (i) proactively identifying potentially adversely affected stakeholders; (ii) comprehensively including them in the decision-making process; (iii) ensuring meaningful participation; (iv) communication of recommendations or decisions; and (v) the organization of evaluation and appeal mechanisms. Health authorities are advised to use a checklist in the form of 29 reflective questions, aligned with these five key steps, to assist them in the practical organization of legitimate priority setting in healthcare.

SUBMITTER: Jansen MPM

PROVIDER: S-EPMC6326635 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

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Stakeholder Participation for Legitimate Priority Setting: A Checklist.

Jansen Maarten P M MPM Baltussen Rob R Bærøe Kristine K

International journal of health policy and management 20181101 11

Accountable decision-makers are required to legitimize their priority setting decisions in health to members of society. In this perspective we stress the point that fair, legitimate processes should reflect efforts of authorities to treat all stakeholders as moral equals in terms of providing all people with well-justified, reasonable reasons to endorse the decisions. We argue there is a special moral concern for being accountable to those who are potentially adversely affected by decisions. He ...[more]

PMID: 30624870

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Project description:Background:The Translating Research in Elder Care (TREC) program is a longitudinal partnered program of research in Western Canada that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in long-term care settings. This program of research includes researchers, citizens (persons living with dementia and caregivers of persons living in long-term care), and stakeholders (representatives from provincial and regional health authorities, owner-operators of long-term care homes). The aim of this paper is to describe how we used priority setting methods with citizens and stakeholders to identify ten priorities for research using the TREC data. Methods:We adapted the James Lind Alliance Priority Setting Partnership method to ensure our citizens and stakeholders could identify priorities within the existing TREC data. We administered an online survey to our citizen and stakeholder partners. An in-person priority setting workshop was held in March 2019 in Alberta, Canada to establish consensus on ten research priorities. The in-person workshop used a nominal group technique and involved two rounds of small group prioritization and one final full group ranking. Results:We received 72 online survey respondents and 19 persons (citizens, stakeholders) attended the in-person priority setting workshop. The workshop resulted in an unranked list of their ten research priorities for the TREC program. These priorities encompassed a range of non-clinical topics, including: influence of staffing (ratios, type of care provider) on residents and staff work life, influence of the work environment on resident outcomes, and the impact of quality improvement activities on residents and staff. Conclusions:This modified priority setting approach provided citizens and stakeholders with an opportunity to identify their own research priorities within the TREC program, without the external pressures of researchers. These priorities will inform the secondary analyses of the TREC data and the development of new projects. This modified priority setting may be a useful approach for research teams trying to engage their non-academic partners and to identify areas for future research.

Project description:BackgroundThis scoping review provides a thorough analysis of how stakeholders have so far been involved in research priority setting. The review describes, synthesizes, and evaluates research priority setting projects not only for the field of health-as previous reviews have done-but does so on a much broader scale for any research area.MethodsA comprehensive electronic literature search was conducted in the databases PubMed, Scopus, and Web of Science. Reflecting the importance of grey literature, Google Scholar and relevant websites were also screened for eligible publications. A computational approach was then used for the study selection. The final screening for inclusion was done manually.ResultsThe scoping review encompasses 731 research priority setting projects published until the end of 2020. Overall, the projects were conducted within the realm of 50 subject areas ranging from agriculture and environment over health to social work and technology. Key learnings include that nearly all priority setting projects aimed to identify research priorities for the field of health (93%), particularly for nursing and care, cancer, pediatrics, and mental, behavioral and neurodevelopmental disorders. Only 6% of the projects were not health-related and 1% identified research priorities at the interface between health and a non-health area. Over time, 30 different stakeholder groups took part in research priority setting. The stakeholders most frequently asked to identify research priorities were doctors, patients, academics/researchers, nurses, allied healthcare professionals, family members, friends, and carers. Nearly two thirds of all projects have been conducted in Europe and North America. Overall, only 9% of the projects emphasized the importance of stakeholders in their goals and rationales and actively involved them. In around a quarter of the projects, stakeholders deliberated on their research priorities throughout the entire process.ConclusionBy mapping out the complex landscape of stakeholder involvement in research priority setting, this review guides future efforts to involve stakeholders effectively, inclusively, and transparently, which in turn may increase the overall value of research for society. As a practical addition to this review, the first worldwide research priority setting database was created: https://ois.lbg.ac.at/en/project-database . The database contains all the projects analyzed for this review and is constantly updated with the latest published research priority setting projects.

Dataset Information

Stakeholder Participation for Legitimate Priority Setting: A Checklist.

Publications

Stakeholder Participation for Legitimate Priority Setting: A Checklist.

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