Dataset Information

Evaluating community deliberations about health research priorities.

ABSTRACT:

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.

SUBMITTER: Goold SD

PROVIDER: S-EPMC6737773 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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Publications

Evaluating community deliberations about health research priorities.

Goold Susan Dorr SD Danis Marion M Abelson Julia J Gornick Michelle M Szymecko Lisa L Myers C Daniel CD Rowe Zachary Z Kim Hyungjin Myra HM Salman Cengiz C

Health expectations : an international journal of public participation in health care and health policy 20190628 4

<h4>Context</h4>Engaging underrepresented communities in health research priority setting could make the scientific agenda more equitable and more responsive to their needs.<h4>Objective</h4>Evaluate democratic deliberations engaging minority and underserved communities in setting health research priorities.<h4>Methods</h4>Participants from underrepresented communities throughout Michigan (47 groups, n = 519) engaged in structured deliberations about health research priorities in professionally ...[more]

PMID: 31251446

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Project description:ObjectiveThe aims of this study were to assess participatory methods for obtaining community views on child health research.BackgroundCommunity participation in research is recognised as an important part of the research process; however, there has been inconsistency in its implementation and application in Australia. The Western Australian Telethon Kids Institute Participation Program employs a range of methods for fostering active involvement of community members in its research. These include public discussion forums, called Community Conversations. While participation levels are good, the attendees represent only a sub-section of the Western Australian population. Therefore, we conducted a telephone survey of randomly selected households to evaluate its effectiveness in eliciting views from a broader cross-section of the community about our research agenda and community participation in research, and whether the participants would be representative of the general population. We also conducted two Conversations, comparing the survey as a recruitment tool and normal methods using the Participation Program.ResultsWhile the telephone survey was a good method for eliciting community views about research, there were marked differences in the profile of study participants compared to the general population (e.g. 78% vs 50% females). With a 26% response rate, the telephone survey was also more expensive than a Community Conversation. The cold calling approach proved an unsuccessful recruitment method, with only two out of a possible 816 telephone respondents attending a Conversation.ConclusionWhile the results showed that both of the methods produced useful input for our research program, we could not conclude that either method gained input that was representative of the entire community. The Conversations were relatively low-cost and provided more in-depth information about one subject, whereas the telephone survey provided information across a greater range of subjects, and allowed more quantitative analysis.

Project description:ObjectivesTo identify a broad range of research priorities to inform the studies seeking to improve population health outcomes based on the engagement of diverse stakeholders.MethodsA 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.ResultsDiverse 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.ConclusionsThis 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:To systematically identify global research gaps and resource priorities for integrated community case management (iCCM).An iCCM Child Health and Nutrition Research Initiative (CHNRI) Advisory Group, in collaboration with the Community Case Management Operational Research Group (CCM ORG) identified experts to participate in a CHNRI research priority setting exercise. These experts generated and systematically ranked research questions for iCCM. Research questions were ranked using a "Research Priority Score" (RPS) and the "Average Expert Agreement" (AEA) was calculated for every question. Our groups of experts were comprised of both individuals working in Ministries of Health or Non Governmental Organizations (NGOs) in low- and middle-income countries (LMICs) and individuals working in high-income countries (HICs) in academia or NGO headquarters. A Spearman's Rho was calculated to determine the correlation between the two groups' research questions' ranks.The overall RPS ranged from 64.58 to 89.31, with a median score of 81.43. AEA scores ranged from 0.54 to 0.86. Research questions involving increasing the uptake of iCCM services, research questions concerning the motivation, retention, training and supervision of Community Health Workers (CHWs) and concerning adding additional responsibilities including counselling for infant and young child feeding (IYCF) and treatment of severe acute malnutrition (SAM) ranked highly. There was weak to moderate, statistically significant, correlation between scores by representatives of high-income countries and those working in-country or regionally (Spearman's ??=?0.35034, P?<?0.01).Operational research to determine optimal training, supervision and modes of motivation and retention for the CHW is vital for improving iCCM, globally, as is research to motivate caregivers to take advantage of iCCM services. Experts working in-country or regionally in LMICs prioritized different research questions than those working in organization headquarters in HICs. Further exploration is needed to determine the nature of this divergence.

Project description:BACKGROUND:Women with or at high risk of diabetes have unique health concerns across their life course. Effective methods are needed to engage women living with diabetes to develop and carry out a patient-centered research agenda. OBJECTIVE:This study aimed to (1) describe the creation of DiabetesSistersVoices, a virtual patient community for women living with and at risk for diabetes and (2) assess the feasibility and acceptability of DiabetesSistersVoices for engaging women in talking about their experiences, health care, and research priorities. METHODS:We partnered with a national advocacy organization to create DiabetesSistersVoices and to develop recruitment strategies, which included use of social media, Web-based newsletters, and weblinks through partnering organizations. Study inclusion criteria were as follows: Being a woman aged ≥18 years, residing in the United States, and self-reporting a diagnosis of diabetes or risk of diabetes. Eligible participants were given access to DiabetesSistersVoices and completed online surveys at enrollment and 6 months. We assessed trends in participants' activities, including posting questions, sharing experiences about living with diabetes, and searching for posted resources. RESULTS:We enrolled 332 women (white: 86.5%; type 1 diabetes: 76.2%; median age: 51 years [interquartile range: 31 to 59 years]) over 8 months. Most (41.6%, 138/332) were classified as being active users (ie, posting) of the virtual community, 36.1% (120/332) as observers (ie, logged in but no posts), and 22.3% (74/332) as never users (ie, completed baseline surveys but then never logged in). Online activities were constant during the study, although participants had the highest website usage during the first 10 weeks after their enrollment. CONCLUSIONS:We demonstrated the feasibility and acceptability of an online patient community for women living with diabetes by showing durability of recruitment and online usage over 6 months of testing. Next steps are to address barriers to joining a virtual patient community for women of color and women with type 2 diabetes to enhance inclusiveness and gain diverse perspectives to inform diabetes research.

Project description:Background:In 2015, it was estimated that the burden of disease in Iran comprised of 19 million disability-adjusted life years (DALYs), 74% of which were due to non-communicable diseases (NCDs). The observed leading causes of death were cardiovascular diseases (41.9%), neoplasms (14.9%), and road traffic injuries (7.4%). Even so, the health research investment in Iran continues to remain limited. This study aims to identify national health research priorities in Iran for the next five years to assist the efficient use of resources towards achieving the long-term health targets. Methods:Adapting the Child Health and Nutrition Research Initiative (CHNRI) method, this study engaged 48 prominent Iranian academic leaders in the areas related to Iran's long-term health targets, a group of research funders and policy makers, and 68 stakeholders from the wider society. 128 proposed research questions were scored independently using a set of five criteria: feasibility, impact on health, impact on economy, capacity building, and equity. Findings:The top-10 priorities were focused on the research questions relating to: health insurance system reforms to improve equity; integration of NCDs prevention strategy into primary health care; cost-effective population-level interventions for NCDs and road traffic injury prevention; tailoring medical qualifications; epidemiological assessment of NCDs by geographic areas; equality in the distribution of health resources and services; current and future common health problems in Iran's elderly and strategies to reduce their economic burden; the status of antibiotic resistance in Iran and strategies to promote rational use of antibiotics; the health impacts of water crisis; and research to replace the physician-centered health system with a team-based one. Conclusions:These findings highlight consensus amongst various prominent Iranian researchers and stakeholders over the research priorities that require investment to generate information and knowledge relevant to the national health targets and policies. The exercise should assist in addressing the knowledge gaps to support both the National General Health Policies by 2025 and the health targets of the United Nations' Sustainable Development Goals by 2030.

Project description:BACKGROUND:The perspectives of mental health consumers and carers are increasingly recognised as important to the development and conduct of research. However, research directions are still most commonly developed without consumer and carer input. This project aimed to establish priorities for mental health research driven by the views of consumers and carers in Australia. METHOD:The project was conducted in two studies. Firstly, a face-to-face discussion forum held in the Australian Capital Territory (Study 1; n?=?25), followed by a national online survey (Study 2; n?=?70). Participants in both studies were members of the community who identified as a mental health consumer, carer or both. In Study 1, participants developed topics for mental health research in small group discussions, then voted on which topics, developed across all groups and sorted into thematic areas, were a priority. An online survey was developed from these research topics. Study 2 participants were asked to rate topics on a 5-point priority scale and rank the relative importance of the highest-rated topics. RESULTS:At the forum, 79 topics were generated and grouped into 14 thematic areas. Votes on priorities were spread across a large number of topics, with the greatest overall support for research relating to integrating care that is sensitive to past experiences of trauma into mental health service delivery (trauma-informed care). Survey responses were similarly spread, with the majority of research topics rated as important by at least 50% of participants and no clear individual priorities for research identified. Amongst items rated as important by approximately 80% of participants, key research areas included the delivery of services, and consumer and carer involvement. CONCLUSIONS:Australian mental health consumers and carers demonstrate a strong understanding of the mental health system and its inadequacies. Although clear specific priorities are difficult to establish, consistent areas of focus are services and the role consumers and carers can play in their improvement. However, for consumer and carer views to be at the forefront of research, it is important to regularly update research agendas and work in partnership across the whole research process.

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.

Dataset Information

Evaluating community deliberations about health research priorities.

Context

Objective

Methods

Results

Conclusions

Publications

Evaluating community deliberations about health research priorities.

Similar Datasets

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