Priorities for Patient‐Centered Outcomes Research: The Views of Minority and Underserved Communities

Goold, Susan Dorr; Myers, C. Daniel; Szymecko, Lisa; Collins, Carla Cunningham; Martinez, Sal; Ledón, Charo; Campbell, Terrance R.; Danis, Marion; Cargill, Stephanie Solomon; Kim, Hyungjin Myra; Rowe, Zachary

doi:10.1111/1475-6773.12505

Cited by 11 publications

(26 citation statements)

References 10 publications

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“…A description of Tier 1 deliberative engagement activities in ‘health ecosystem priority setting’ were limited to Khodyakov’s [ 13 ] literature review, and were limited in description. The literature better emphasized highly-structured patient and public engagement planning processes and activities for research, including the James Lind Alliance Priority Setting Partnerships (UK) [ 10 , 16 , 24 – 35 ], the Dialogue Method (Netherlands) [ 25 , 36 – 39 ], Global Evidence Mapping (Australia) [ 5 ], and the Deep Inclusion Method/CHoosing All Together (US) [ 21 , 40 ]. While these research planning processes and activities differed, a common approach across Tier 1 public and patient engagement priority setting in research planning included gathering and analyzing identified research priorities by engaging patients and the public along with clinicians and researchers, followed by prioritization of topics through dialogue between all stakeholders.…”

Section: Resultsmentioning

confidence: 99%

Patient and public engagement in priority setting: A systematic rapid review of the literature

Manafò¹,

Petermann²,

et al. 2018

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BackgroundCurrent 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.ObjectiveThe 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.Data sourcesHealthStar (via OVID); CINAHL; Proquest Databases; and Scholar’s Portal.Study eligibility criteriai) 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.Study appraisal and synthesisi) 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.ResultsSeventy 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).LimitationsThe 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.ConclusionThe 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.

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Section: Resultsmentioning

confidence: 99%

Patient and public engagement in priority setting: A systematic rapid review of the literature

Manafò¹,

Petermann²,

et al. 2018

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“…To adapt CHAT to the unique needs and objectives of research priority setting with minority and underserved communities, we utilized a participatory process, led by a Steering Committee comprised of a † We describe the priorities for health research spending selected by participants using this exercise elsewhere. 35,47…”

Section: Me Thodsmentioning

confidence: 99%

Evaluating community deliberations about health research priorities

Goold¹,

Danis

Abelson

et al. 2019

Health Expectations

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Context Engaging underrepresented communities in health research priority setting could make the scientific agenda more equitable and more responsive to their needs. Objective Evaluate democratic deliberations engaging minority and underserved communities in setting health research priorities. Methods Participants from underrepresented communities throughout Michigan (47 groups, n = 519) engaged in structured deliberations about health research priorities in professionally facilitated groups. We evaluated some aspects of the structure, process, and outcomes of deliberations, including representation, equality of participation, participants’ views of deliberations, and the impact of group deliberations on individual participants’ knowledge, attitudes, and points of view. Follow‐up interviews elicited richer descriptions of these and also explored later effects on deliberators. Results Deliberators (age 18‐88 years) overrepresented minority groups. Participation in discussions was well distributed. Deliberators improved their knowledge about disparities, but not about health research. Participants, on average, supported using their group's decision to inform decision makers and would trust a process like this to inform funding decisions. Views of deliberations were the strongest predictor of these outcomes. Follow‐up interviews revealed deliberators were particularly struck by their experience hearing and understanding other points of view, sometimes surprised at the group's ability to reach agreement, and occasionally activated to volunteer or advocate. Conclusions Deliberations using a structured group exercise to engage minority and underserved community members in setting health research priorities met some important criteria for a fair, credible process that could inform policy. Deliberations appeared to change some opinions, improved some knowledge, and were judged by participants worth using to inform policymakers.

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“…Gaining consensus about which research efforts are most likely to advance science, inform best practices to improve the outcomes and experiences of patients and caregivers, and identify gaps in knowledge is central to this goal. Although research priorities have traditionally been set by researchers and clinicians (5), engaging patients and informal family and formal nonfamily caregivers has been found to establish research agendas that are "more just, more accountable, and more responsive to patients' needs and values" (6). The James Lind Alliance's guidelines on the methods of establishing priority setting partnerships (PSPs) have been important in engaging clinicians, policy makers, patients, and caregivers in setting research agendas that accelerate patient-centered research (7,8).…”

Section: Methods Phase 1 Selection and Approval Of Candidate Survey mentioning

confidence: 99%

Nursing Research Priorities in Critical Care, Pulmonary, and Sleep: International Delphi Survey of Nurses, Patients, and Caregivers

et al. 2020

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The objective of this workshop was to determine current nursing research priorities in critical care, adult pulmonary, and sleep conditions through input from consumer (patient, family, and formal and informal caregivers) and nursing experts around the world. Working groups composed of nurses and patients selected potential research priorities based on patient insight and a literature review of patient-reported outcomes, patient-reported experiences, and processes and clinical outcomes in the focal areas. A Delphi consensus approach, using a qualitative survey method to elicit expert opinion from nurses and consumers was conducted. Two rounds of online surveys available in English, Spanish, and Chinese were completed. A 75% or greater threshold for endorsement (combined responses from nursing and consumer participants) was determined a priori to retain survey items. A total of 837 participants (649 nurses and 188 patients, family, and/or caregivers) from 45 countries responded. Survey data were analyzed and nursing research priorities that comprise 23 critical care, 45 adult pulmonary, and 16 sleep items were identified. This project was successful in engaging a wide variety of nursing and consumer experts, applying a patient-reported outcome/patientreported experience framework for organizing and understanding research priorities. The project outcome was a research agenda to inform, guide, and aid nurse scientists, educators, and providers, and to advise agencies that provide research and program funding in these fields.

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Priorities for Patient‐Centered Outcomes Research: The Views of Minority and Underserved Communities

Abstract: Members of underserved communities, in informed deliberations, prioritized research on Quality of Life, Patient-Doctor, Special Needs, Access, and Compare Approaches.

Cited by 11 publications

References 10 publications

Patient and public engagement in priority setting: A systematic rapid review of the literature

Patient and public engagement in priority setting: A systematic rapid review of the literature

Evaluating community deliberations about health research priorities

Nursing Research Priorities in Critical Care, Pulmonary, and Sleep: International Delphi Survey of Nurses, Patients, and Caregivers

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