Dataset Information

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

ABSTRACT:

Objective

To learn how minority and underserved communities would set priorities for patient-centered outcomes research (PCOR).

Data sources

Sixteen groups (n = 183) from minority and underserved communities in two states deliberated about PCOR priorities using the simulation exercise CHoosing All Together (CHAT). Most participants were minority, one-third reported income <$10,000, and one-fourth reported fair/poor health.

Design

Academic-community partnerships adapted CHAT for PCOR priority setting using existing research agendas and interviews with community leaders, clinicians, and key informants.

Data collection

Tablet-based CHAT collected demographic information, individual priorities before and after group deliberation, and groups' priorities.

Principal findings

Individuals and groups prioritized research on Quality of Life, Patient-Doctor, Access, Special Needs, and (by total resources spent) Compare Approaches. Those with less than a high school education were less likely to prioritize New Approaches, Patient-Doctor, Quality of Life, and Families/Caregivers. Blacks were less likely to prioritize research on Causes of Disease, New Approaches, and Compare Approaches than whites. Compare Approaches, Special Needs, Access, and Families/Caregivers were significantly more likely to be selected by individuals after compared to before deliberation.

Conclusions

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

SUBMITTER: Goold SD

PROVIDER: S-EPMC5346487 | biostudies-literature | 2017 Apr

REPOSITORIES: biostudies-literature

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Publications

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

Goold Susan Dorr SD Myers C Daniel CD Szymecko Lisa L Cunningham Collins Carla C Martinez Sal S Ledón Charo C Campbell Terrance R TR Danis Marion M Cargill Stephanie Solomon SS Kim Hyungjin Myra HM Rowe Zachary Z

Health services research 20160520 2

<h4>Objective</h4>To learn how minority and underserved communities would set priorities for patient-centered outcomes research (PCOR).<h4>Data sources</h4>Sixteen groups (n = 183) from minority and underserved communities in two states deliberated about PCOR priorities using the simulation exercise CHoosing All Together (CHAT). Most participants were minority, one-third reported income <$10,000, and one-fourth reported fair/poor health.<h4>Design</h4>Academic-community partnerships adapted CHAT ...[more]

PMID: 27206519

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Project description:Policy Points Engaging and involving underrepresented communities when setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. Groups and individuals from minority and underserved communities strongly prioritized child health and mental health research, often choosing to invest at the highest possible level. Groups consisting of predominantly Native American or Arab American participants invested in culture and beliefs research at the highest level, while many groups did not select it at all. The priority given to culture and beliefs research by these groups illustrates the importance of paying special attention to unique preferences, and not just commonly held views, when getting public input on spending priorities for research.ContextA major contributor to health disparities is the relative lack of resources-including resources for science-allocated to address the health problems of those with disproportionately greater needs. Engaging and involving underrepresented communities in setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. We engaged minority and underserved communities in informed deliberations and report here their priorities for health research.MethodsAcademic-community partnerships adapted the simulation exercise CHAT for setting health research priorities. We had participants from minority and medically underserved communities (47 groups, n = 519) throughout Michigan deliberate about health research priorities, and we used surveys and CHAT software to collect the demographic characteristics and priorities selected by individuals and groups.FindingsThe participants ranged in age (18 to 88), included more women than men, and were overrepresented by minority groups. Nearly all the deliberating groups selected child health and mental health research (93.6% and 95.7%), and most invested at the highest level. Aging, access, promote health, healthy environment, and what causes disease were also prioritized by groups. Research on mental health and child health were high priorities for individuals both before and after group deliberations. Access was the only category more likely to be selected by individuals after group deliberation (77.0 vs 84.0%, OR = 1.63, p = .005), while improve research, health policy, and culture and beliefs were less likely to be selected after group deliberations (all, p < .001). However, the level of investment in many categories changed after the group deliberations. Participants identifying as Black/African American were less likely to prioritize mental health research, and those of Other race were more likely to prioritize culture and beliefs research.ConclusionsMinority and medically underserved communities overwhelmingly prioritized mental health and child health research in informed deliberations about spending priorities.

Project description:Introduction/objectivesThe engagement of patients and other stakeholders is a critical element in the design of patient-centered outcomes research studies. However, methodology for scalable engagement in research management particularly activities such as operationalization of principles and setting of priorities is not well-developed. The objective of this study is to describe a novel approach for scalable stakeholder engagement in research aligned with the Patient-Centered Outcomes Research Institute (PCORI) engagement principles, which was evaluated in a national clinical data research network.Materials and methodsPatient, patient advocate, clinician, and researcher stakeholders were recruited from clinical sites, as well as social media sites related to the 3 conditions of focus, heart failure, obesity, and Kawasaki disease. The engagement strategy was designed, implemented, and mapped to the PCORI engagement principles. Evaluation included internal assessment and quantitative measures of online engagement.ResultsWe operationalized the PCORI principles with 12 stakeholder engagement strategies and convened stakeholder advisory boards and online research prioritization panels to determine research priorities in a rigorous, deliberative process. A total of 46 advisors (20 patients) and 339 panelists (159 patients) actively participated. There were not significant differences between patients and clinicians in level of online engagement. Nonetheless, while patients reported a slightly greater challenge with following online discussion, they overall had a more favorable opinion about use of the online format.Discussion/conclusionAn efficient way to engage large numbers of representative stakeholders in research is a necessary first step to assure the public of trustworthy use of data networks for health research. This paper describes a comprehensive approach to engagement in patient-centered outcomes research management that informs ongoing development of rigorous methodologies in this area.

Project description:BackgroundUnderstanding the perceived importance of Patient-Centered Care (PCC) among Palestinian doctors and how the provider and other clinical characteristics may impact their views on PCC is essential to determine the extent to which PCC can be implemented. This study investigates the provision of PCC among hospital doctors in a developing and unstable country, namely, Palestine.MethodsThis descriptive, cross-sectional research employed self-report survey among 369 Palestinian doctors working in hospitals in 2016. Respondents completed the Provider-Patient Relationship Questionnaire (PPRQ) and were asked to rate the importance of 16 PCC subjects in a context-free manner. Then they scored the existence of eight contextual attributes in their workplace.ResultsAlthough 71.4% of the participants got training in communication, only 45% of the participants knew about PCC. 48.8% of doctors considered the "exchange of information" with patients most important PCC component. Clustering identified three groups of doctors: 32.4% of doctors reported good perceptions of PCC, 47.5% moderate; and 20.1% poor. Older, married, and specialist doctors and those familiar with PCC are more likely classified in the "good" cluster. Results revealed a significant difference between doctors' views based on their gender, experience, marital status, previous knowledge about PCC, and type of hospital in favor of males, experienced, married, familiar with PCC, and doctors in private hospital respectively. The level of job interest, nurses' cooperation, the tendency of patients to hide information, and doctor's friendly style were positively related with more perceived importance of PCC.ConclusionWe identified benchmark doctors who perceive the high relative importance of PCC. Our results highlighted knowledge gaps and training weaknesses among doctors in public and private hospitals in respect to their views on PCC. Decision makers may invest in the determined contextual predictors to enhance attitudes towards PCC. This work doesn't address patients' views on PCC.

Dataset Information

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

Objective

Data sources

Design

Data collection

Principal findings

Conclusions

Publications

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

Similar Datasets

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