Patient and public engagement in priority setting: A systematic rapid review of the literature.
ABSTRACT: Current research suggests that while patients are becoming more engaged across the health delivery spectrum, this involvement occurs most often at the pre-preparation stage to identify 'high-level' priorities in health ecosystem priority setting, and at the preparation phase for health research.The purpose of this systematic rapid review of the literature is to describe the evidence that does exist in relation to patient and public engagement priority setting in both health ecosystem and health research.HealthStar (via OVID); CINAHL; Proquest Databases; and Scholar's Portal.i) published in English; ii) published within the timeframe of 2007-Current (10 years) unless the report/article was formative in synthesizing key considerations of patient engagement in health ecosystem and health research priority setting; iii) conducted in Canada, the US, Europe, UK, Australia/New Zealand, or Scandinavian countries.i) Is the research valid, sound, and applicable?; ii) what outcomes can we potentially expect if we implement the findings from this research?; iii) will the target population (i.e., health researchers and practitioners) be able to use this research?. A summary of findings from each of the respective processes was synthesized to highlight key information that would support decision-making for researchers when determining the best priority setting process to apply for their specific patient-oriented research.Seventy articles from the UK, US, Canada, Netherlands and Australia were selected for review. Results were organized into two tiers of public and patient engagement in prioritization: Tier 1-Deliberative and Tier 2-Consultative. Highly structured patient and public engagement planning activities include the James Lind Alliance Priority Setting Partnerships (UK), Dialogue Method (Netherlands), Global Evidence Mapping (Australia), and the Deep Inclusion Method/CHoosing All Together (US).The critical study limitations include challenges in comprehensively identifying the patient engagement literature for review, bias in article selection due to the identified scope, missed information due to a more limited use of exhaustive search strategies (e.g., in-depth hand searching), and the heterogeneity of reported study findings.The four public and patient engagement priority setting processes identified were successful in setting priorities that are inclusive and objectively based, specific to the priorities of stakeholders engaged in the process. The processes were robust, strategic and aimed to promote equity in patient voices. Key limitations identified a lack of evaluation data on the success and extent in which patients were engaged. Issues pertaining to feasibility of stakeholder engagement, coordination, communication and limited resources were also considered.
Project description:BACKGROUND:Priority-driven funding streams for population and public health are an important part of the health research landscape and contribute to orienting future scholarship in the field. While research priorities are often made public through targeted calls for research, less is known about how research funding organisations arrive at said priorities. Our objective was to explore how public health research funding organisations develop priorities for strategic extramural research funding programmes. METHODS:Content analysis of published academic and grey literature and key informant interviews for five public and private funders of public health research in the United Kingdom, Australia, the United States and France were performed. RESULTS:We found important distinctions in how funding organisations processed potential research priorities through four non-sequential phases, namely idea generation, idea analysis, idea socialisation and idea selection. Funders generally involved the public health research community and public health decision-makers in idea generation and socialisation, but other groups of stakeholders (e.g. the public, advocacy organisations) were not as frequently included. CONCLUSIONS:Priority-setting for strategic funding programmes in public health research involves consultation mainly with researchers in the early phase of the process. There is an opportunity for greater breadth of participation and more transparency in priority-setting mechanisms for strategic funding programmes in population and public health research.
Project description:BACKGROUND:Patients and stakeholders are increasingly engaging in health research to help address evidence-practice gaps and improve health-care delivery. We previously engaged patients, caregivers, health-care providers (HCPs) and policymakers in identifying priorities for chronic kidney disease (CKD) research. OBJECTIVE:We aimed to explore participants' views on the research priorities and prioritization process 2 years after the exercise took place. DESIGN:In this qualitative descriptive study, individual interviews were conducted and analysed using an inductive, thematic analysis approach. SETTING/PARTICIPANTS:Participants resided across Canada. We purposively sampled across stakeholder groups (CKD patients, caregivers, HCPs and policymakers) and types of engagement (wiki, workshop and/or steering committee) from the previous CKD priority-setting project. RESULTS:Across 23 interviews, participants discussed their research priorities over time, views on the prioritization process and perceived applicability of the priorities. Even though their individual priorities may have changed, participants remained in agreement overall with the previously identified priorities, and some perceived a distinction between patient and HCP priorities. They tended to balance individual priorities with their broader potential impact and viewed the prioritization process as systematic, collaborative and legitimate. However, participants acknowledged challenges to applying the priorities and emphasized the importance of communicating the project's outcomes upon its completion. CONCLUSION:Two years after engaging in CKD research prioritization, stakeholder participants remained in agreement with the previously identified priorities, which they felt reflected group deliberation and consensus. Rapport and communication were highlighted as key elements supporting effective engagement in research prioritization.
Project description:Plain English summary:The Alberta Depression Research Priority Setting Project aimed to meaningfully involve patients, families and clinicians in determining a research agenda aligned to the needs of Albertans who have experienced depression. The project was modeled after a process developed in the UK by the James Lind Alliance and adapted to fit the Alberta, Canada context. This study describes the processes used to ensure the voices of people with lived experience of depression were integrated throughout the project stages. The year long project culminated with a facilitated session to identify the top essential areas of depression research focus. People with lived experience were engaged as part of the project's Steering Committee, as survey participants and as workshop participants. It is hoped this process will guide future priority setting opportunities and advance depression research in Alberta. Abstract:Background The Depression Research Priority Setting (DRPS) project has the clear aim of describing the patient engagement process used to identify depression research priorities and to reflect on the successes of this engagement approach, positive impacts and opportunities for improvement. To help support patient-oriented depression research priority setting in Alberta, the Patient Engagement (PE) Platform of the Alberta Strategy for Patient Oriented Research Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit designed, along with the support of their partners in addictions and mental health, an explit process to engage patients in the design and execution of the DRPS. Methods The UK's James Lind Alliance (JLA) Priority Setting Partnership (PSP) method was adapted into a six step process to ensure voices of "people with lived experience" (PWLE) with depression were included throughout the project stages. This study uses an explicit and parallel patient engagement process throughout each estage of the PSP designed by the PE Platform. Patient engagement was divided into a five step process: i) Awareness and relationship building; ii) Co-designing and co-developing a shared decision making process; iii) Collaborative communication; iv) Collective sensemaking; and v) Acknowledgement, celebration and recognition. A formative evaluation of the six PE processes was undertaken to explore the success of the parallel patient engagement process. Results This project was successful in engaging people with lived depression experience as partners in research priority setting, incorporating their voices into the discussions and decisions that led to the top 25 depression research questions. Conclusions The DRPS project has positively contributed to depression research in Canada by identifying the priorities of Albertans who have experienced depression for depression research. Dissemination activities to promote further knowledge exchange of prioritized research questions, with emphasis on the importance of process in engaging the voices of PWLE of depression are planned.
Project description:BACKGROUND:To support patient-oriented setting of priorities for depression research in Alberta, the Patient Engagement Platform of the Alberta Strategy for Patient Oriented Research's Support for People and Patient-Oriented Research and Trials Unit and Alberta Health Services' Addiction and Mental Health Strategic Clinical Network, along with partners in addictions and mental health, designed the Alberta Depression Research Priority Setting Project. The aim of the project was to survey patients, caregivers and clinicians/researchers in Alberta about what they considered to be the most important unanswered questions about depression. METHODS:The project adapted the James Lind Alliance Priority Setting Partnership method into a 6-step process to gather and prioritize questions about depression posed by people with lived depression experience, which included patients, caregivers, clinicians and health care practitioners. RESULTS:Implementation of the project, from initial data collection to final priority setting, took 10 months (August 2016 to June 2017). A total of 445 Albertans with lived experience of depression participated, ultimately identifying 11 priority depression research questions spanning the health continuum, life stages, and treatment and prevention opportunities. INTERPRETATION:This project is a fundamental step that has the potential to positively influence depression research. Including the voices of Albertans with lived experience will create advantages for depression research for Albertans, researchers and research funders, and for patient engagement in the research enterprise overall.
Project description:OBJECTIVE:Physical healthcare has dominated the patient safety field; research in mental healthcare is not as extensive but findings from physical healthcare cannot be applied to mental healthcare because it delivers specialised care that faces unique challenges. Therefore, a clearer focus and recognition of patient safety in mental health as a distinct research area is still needed. The study aim is to identify future research priorities in the field of patient safety in mental health. DESIGN:Semistructured interviews were conducted with the experts to ascertain their views on research priorities in patient safety in mental health. A three-round online Delphi study was used to ascertain consensus on 117 research priority statements. SETTING AND PARTICIPANTS:Academic and service user experts from the USA, UK, Switzerland, Netherlands, Ireland, Denmark, Finland, Germany, Sweden, Australia, New Zealand and Singapore were included. MAIN OUTCOME MEASURES:Agreement in research priorities on a five-point scale. RESULTS:Seventy-nine statements achieved consensus (>70%). Three out of the top six research priorities were patient driven; experts agreed that understanding the patient perspective on safety planning, on self-harm and on medication was important. CONCLUSIONS:This is the first international Delphi study to identify research priorities in safety in the mental field as determined by expert academic and service user perspectives. A reasonable consensus was obtained from international perspectives on future research priorities in patient safety in mental health; however, the patient perspective on their mental healthcare is a priority. The research agenda for patient safety in mental health identified here should be informed by patient safety science more broadly and used to further establish this area as a priority in its own right. The safety of mental health patients must have parity with that of physical health patients to achieve this.
Project description:OBJECTIVES:The overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients and clinician-researchers new to patient-oriented research (POR), to build a multidisciplinary POR team and form an advisory committee for the Libin Cardiovascular Institute of Alberta. DESIGN:This qualitative POR used a participatory health research paradigm to work with participants in eliciting their priorities. Therefore, participants were involved in priority setting, and analysis of findings. Participants also developed a plan for continued engagement to support POR in CV health research. SETTING:Libin Cardiovascular Institute of Alberta, Cumming School of Medicine, University of Calgary, Canada. PARTICIPANTS:A total of 23 participants, including patients and family caregivers (n=12) and clinician-researchers (n=11). RESULTS:Participants identified barriers and facilitators to POR in CV health (lack of awareness of POR and poor understanding on the role of patients) and 10 research priorities for improving CV health. The CV health research priorities include: (1) CV disease prediction and prevention, (2) access to CV care, (3) communication with providers, (4) use of eHealth technology, (5) patient experiences in healthcare, (6) patient engagement, (7) transitions and continuity of CV care, (8) integrated CV care, (9) development of structures for patient-to-patient support and (10) research on rare heart diseases. CONCLUSIONS:In this study, research priorities were identified by patients and clinician-researchers working together to improve CV health. Future research programme and projects will be developed to address these priorities. A key output of this study is the creation of the patient advisory council that will provide support and will work with clinician-researchers to improve CV health.
Project description:BACKGROUND: Priority setting is increasingly recognised as essential for directing finite resources to support research that maximizes public health benefits and drives health equity. Priority setting processes have been undertaken in a number of low- and middle-income country (LMIC) settings, using a variety of methods. We undertook a critical review of reports of these processes. METHODS AND FINDINGS: We searched electronic databases and online for peer reviewed and non-peer reviewed literature. We found 91 initiatives that met inclusion criteria. The majority took place at the global level (46%). For regional or national initiatives, most focused on Sub Saharan Africa (49%), followed by East Asia and Pacific (20%) and Latin America and the Caribbean (18%). A quarter of initiatives aimed to cover all areas of health research, with a further 20% covering communicable diseases. The most frequently used process was a conference or workshop to determine priorities (24%), followed by the Child Health and Nutrition Initiative (CHNRI) method (18%). The majority were initiated by an international organization or collaboration (46%). Researchers and government were the most frequently represented stakeholders. There was limited evidence of any implementation or follow-up strategies. Challenges in priority setting included engagement with stakeholders, data availability, and capacity constraints. CONCLUSIONS: Health research priority setting (HRPS) has been undertaken in a variety of LMIC settings. While not consistently used, the application of established methods provides a means of identifying health research priorities in a repeatable and transparent manner. In the absence of published information on implementation or evaluation, it is not possible to assess what the impact and effectiveness of health research priority setting may have been.
Project description:BACKGROUND:Despite continued investment, Maternal, Newborn and Child Health (MNCH) indicators in low and middle income countries have remained relatively poor. This could, in part, be explained by inadequate resources to adequately address these problems, inappropriate allocation of the available resources, or lack of implementation of the most effective interventions. Systematic priority setting and resource allocation could contribute to alleviating these limitations. There is a paucity of literature that follows through MNCH prioritization processes to implementation, making it difficult for policy makers to understand the impact of their decision-making on population health. The overall objective of this paper was to describe and evaluate priority setting for maternal, newborn and child health interventions in Uganda. METHODS:Fifty-four key informant interviews and a review of policies and media reports were used to describe priority setting for MNCH in Uganda. Kapiriri and Martin's conceptual framework was used to evaluate priority setting for MNCH. RESULTS:There were three main prioritization exercises for maternal, newborn and child health in Uganda. The processes were participatory and were guided by explicit tools, evidence, and criteria, however, the public and the districts were insufficiently involved in the priority setting process. While there were conducive contextual factors including strong political support, implementation was constrained by the presence of competing actors, with varying priorities, an unequal allocation of resources between child health and maternal health interventions, limited financial and human resources, a weak health system and limited institutional capacity. CONCLUSIONS:Stronger institutional capacity at the Ministry of Health and equitable engagement of key stakeholders in decision-making processes, especially the public, and implementers, would improve understanding, satisfaction and compliance with the priority setting process. Availability of financial and human resources that are appropriately allocated would facilitate the implementation of well-developed policies.
Project description:<h4>Objectives</h4>To identify a broad range of research priorities to inform the studies seeking to improve population health outcomes based on the engagement of diverse stakeholders.<h4>Methods</h4>A multi-step, participatory and mixed-methods approach was adopted to solicit and structure the investigative themes from diverse stakeholders. The priority setting exercise involved four key phases: (1) feedback from community leadership; (2) interim ranking survey and focus group discussions during the population health symposium; (3) individual in-depth interviews with stakeholders in the community; and (4) synthesis of the research priorities from the multistep process.<h4>Results</h4>Diverse stakeholders in Singapore, comprising community partnership leaders, health care and social service providers, users of population health services, patients and caregivers, participated in the research priority setting exercise. Initial 14 priorities were identified from six community leadership feedback, 42 survey responses, two focus groups (n = 16) and 95 in-depth interviews. The final integrated research agenda identified six priorities: empower residents and patients to take charge of their health; improve care transition and management through relationship building and communication; enhance health-social care interface; improve respite care services for long-term caregivers; develop primary care as a driving force for care integration; and capacity building for service providers. Selected research questions in each priority area were also generated to develop novel models of care, foster collaboration, implement optimal services and enhance understanding of the end users' care needs.<h4>Conclusions</h4>This study illuminates that greater community engagement in research priority setting for population health can facilitate the formulation of evidence-based research agendas that matter to the care providers and service users in the community. The outcomes derived from this exercise will help focus researchers' efforts through which meaningful gains can be made for population health.
Project description:Health research priority setting processes assist researchers and policymakers in effectively targeting research that has the greatest potential public health benefit. Many different approaches to health research prioritization exist, but there is no agreement on what might constitute best practice. Moreover, because of the many different contexts for which priorities can be set, attempting to produce one best practice is in fact not appropriate, as the optimal approach varies per exercise. Therefore, following a literature review and an analysis of health research priority setting exercises that were organized or coordinated by the World Health Organization since 2005, we propose a checklist for health research priority setting that allows for informed choices on different approaches and outlines nine common themes of good practice. It is intended to provide generic assistance for planning health research prioritization processes. The checklist explains what needs to be clarified in order to establish the context for which priorities are set; it reviews available approaches to health research priority setting; it offers discussions on stakeholder participation and information gathering; it sets out options for use of criteria and different methods for deciding upon priorities; and it emphasizes the importance of well-planned implementation, evaluation and transparency.