Practical Guidance for Involving Stakeholders in Health Research.
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ABSTRACT:
SUBMITTER: Concannon TW
PROVIDER: S-EPMC6420667 | biostudies-literature | 2019 Mar
REPOSITORIES: biostudies-literature
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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.
| S-EPMC8555197 | biostudies-literature
Project description:Increased global sharing of public health research data has potential to advance scientific progress but may present challenges to the interests of research stakeholders, particularly in low-to-middle income countries. Policies for data sharing should be responsive to public views, but there is little evidence of the systematic study of these from low-income countries. This qualitative study explored views on fair data-sharing processes among 60 stakeholders in Kenya with varying research experience, using a deliberative approach. Stakeholders' attitudes were informed by perceptions of benefit and concerns for research data sharing, including risks of stigmatization, loss of privacy, and undermining scientific careers and validity, reported in detail elsewhere. In this article, we discuss institutional trust-building processes seen as central to perceptions of fairness in sharing research data in this setting, including forms of community involvement, individual prior awareness and agreement to data sharing, independence and accountability of governance mechanisms, and operating under a national framework.
| S-EPMC4548475 | biostudies-literature
Project description:Science Cafés, informal venues to promote bidirectional dialog, inquiry and learning about science between community members, scientists, healthcare and service providers, hold promise as an innovative tool for healthcare researchers and community members to improve health outcomes, especially among populations with health disparities. However, the process of optimizing science cafés is under-studied. We describe the pilot evaluation of a series of Science Cafés, called Garden Cafés (n = 9), conducted from September 2015 through April 2016 in Olmsted County, MN and Duval County, FL to connect Mayo Clinic researchers and local service providers with the community. Selection of discussion topics was guided by a county health needs assessment, which identified community priorities. Before leaving the events, community participants completed a brief anonymous survey assessing sociodemographics and their knowledge of research benefits, readiness to participate as a partner in health research, and health and science literacy confidence. Of the 112 attendees who responded, 51% were female and 51% were Black. Respondents reported that participating in the event significantly improved (all at p<0.001) their understanding on all three measures. Preliminary findings suggest that Garden Cafés are an effective forum to increase community understanding and disposition to collaborate in health research, especially in members from diverse backgrounds.
| S-EPMC6086403 | biostudies-literature
Project description:AIM This paper focuses on stakeholders' active involvement at key stages of the research as members of a Stakeholder Action Group (SAG), particularly in the context of lay stakeholder involvement. Some challenges that can arise and wider issues (e.g. empowerment, the impact of user involvement) are identified and explored within the literature on service user involvement in health care research, reflecting on the implications for researchers. BACKGROUND In the DEPICTED study, lay and professional stakeholders were actively involved in developing a complex research intervention. Lay stakeholders comprised teenage and adult patients with diabetes, parents and patient organization representatives. Professional stakeholders were from a range of disciplines. METHODS Three 1-day research meetings were attended by 13-17 lay stakeholders and 10-11 professional stakeholders (plus researchers). The SAG was responsible for reviewing evidence, advising on developing ideas for the research intervention and guiding plans for evaluation of the intervention in a subsequent trial. Formal evaluations were completed by stakeholders following each SAG meeting. RESULTS Throughout the first (developmental) stage of this two-stage study, lay and professional stakeholders participated or were actively involved in activities that provided data to inform the research intervention. Lay stakeholders identified the need for and contributed to the design of a patient-held tool, strongly influenced the detailed design and content of the research intervention and outcome questionnaire, thus making a major contribution to the trial design. CONCLUSION Stakeholders, including teenagers, can be actively involved in designing a research intervention and impact significantly on study outcomes.
| S-EPMC3638343 | biostudies-literature
Project description:BackgroundCurrently the health research system in Lao PDR is fragmented and largely donor led. Capacity among national public health institutes is limited to select priority research questions for funding.ObjectiveThe objective of this capacity building and practice-oriented study is to describe the process and outcome of the first National Health Research Agenda for Lao PDR and how the agenda contributes to institutional capacity of the Ministry of Health, in order to contribute to evidence-informed public health policy making.MethodThis activity used a mixed-methods approach. The overall design is based on principles of the interactive Learning and Action approach and consists out of 6 phases: (1) identification of needs, (2) shared analysis and integration, (3) nation-wide prioritization of research domains, (4) exploring specific research questions, (5) prioritization of research avenues, (6) dialogue and planning for action. The process involved interviews with experts in health policy and research (n = 42), telephone-based survey with district, provincial and national health staff (n = 135), a two-round Delphi consultation with experts in health policy and research (n = 33), and a workshop with policymakers, researchers, international organisations and civil society (n = 45) were held to gather data and conduct shared analysis.Results11 research domains were identified and prioritised: Health-seeking behaviour; Health system research; Health service provision; Mother and child health (MCH); Sexual & reproductive health; Health education; Non-communicable diseases (NCDs); Irrational drug use; Communicable diseases (CDs); Road traffic accidents; Mental health. Within these domains over 200 unique research questions were identified.ConclusionOur approach led to a comprehensive, inclusive, public health agenda for Lao PDR to realise better informed health policies. Questions on the agenda are action-oriented, originating in a desire to understand the problem so that immediate improvements can be made. The agenda is used within the MoH as a tool to fund and approve research.
| S-EPMC7480602 | biostudies-literature
Project description:Dermatomyositis is a heterogeneous idiopathic inflammatory myopathy associated with various cutaneous manifestations and variable presence of myositis, interstitial lung disease, and other visceral organ involvement. An accurate diagnosis of dermatomyositis requires correlating clinical examination findings with serological and histological findings. Familiarity with pathognomonic and common cutaneous manifestations of dermatomyositis, which are highlighted here, can be especially helpful in making an accurate diagnosis. Additionally, evaluating patients for presence of myositis-specific autoantibodies can further support or refute a dermatomyositis diagnosis. When present, myositis-specific autoantibodies can also help guide workups for various dermatomyositis-associated manifestations, as each is associated with relatively distinct clinical characteristics. Evaluating patients for various systemic manifestations often relies on expert opinion recommendations; however, societal guideline statements concerning the evaluation of some manifestations have recently been described. Although malignancy-associated dermatomyositis is a well-accepted subtype, there is limited evidence to support extensive malignancy screening has a favorable benefit-risk ratio in most dermatomyositis patients. However, recent research has uncovered novel associations between dermatomyositis and malignancy, suggesting the possibility of identifying high-risk subsets of dermatomyositis patients in whom malignancy screening may have a high value. Treatment for dermatomyositis has remained largely unchanged over the past several decades. Although many dermatomyositis patients can be effectively treated with current options, either as monotherapy or with combination regimens, there is a need for more targeted and effective DM therapies, in general, and for MDA5(+) dermatomyositis-associated rapidly progressive interstitial lung disease. Fortunately, significant current and emerging research activities evaluating various novel medications for dermatomyositis provide hope for exciting future advances in patients with this intriguing immune-mediated disease.
| S-EPMC10924937 | biostudies-literature
Project description:INTRODUCTION:We present practical metrics for estimating the expected health benefits of specific research proposals. These can be used by research funders, researchers and healthcare decision-makers within low-income and middle-income countries to support evidence-based research prioritisation. METHODS:The methods require three key assessments: (1) the current level of uncertainty around the endpoints the proposed study will measure; (2) how uncertainty impacts on the health benefits and costs of healthcare programmes and (3) the health opportunity costs imposed by programme costs. Research is valuable because it can improve health by informing the choice of which programmes should be implemented. We provide a Microsoft Excel tool to allow readers to generate estimates of the health benefits of research studies based on these three assessments. The tool can be populated using existing studies, existing cost-effectiveness models and expert opinion. Where such evidence is not available, the tool can quantify the value of research under different assumptions. Estimates of the health benefits of research can be considered alongside research costs, and the consequences of delaying implementation until research reports, to determine whether research is worthwhile. We illustrate the method using a case study of research on HIV self-testing programmes in Malawi. This analysis combines data from the literature with outputs from the HIV synthesis model. RESULTS:For this case study, we found a costing study that could be completed and inform decision making within 1 year offered the highest health benefits (67 000 disability-adjusted life years (DALYs) averted). Research on outcomes improved population health to a lesser extent (12 000 DALYs averted) and only if carried out alongside programme implementation. CONCLUSION:Our work provides a method for estimating the health benefits of research in a practical and timely fashion. This can be used to support accountable use of research funds.
| S-EPMC7462234 | biostudies-literature
Project description:Discussion of public and patient involvement (PPI) in health economics (HE) research is growing. There is much literature on PPI principles and standards, but little specifically regarding involving patients in HE research. Here, we outline "PACTS", a set of principles, developed with a PPI group, for considering patient involvement in HE research. Planning: Involvement is best built in to research plans from the outset. This includes setting specific goals for involvement activities, and clearly communicating the background and purpose of involvement. Approach selection: We describe two main approaches to involvement-discussion-based and task-based. Discussion-based approaches are useful for generating broad insights and revealing "unknown unknowns". Task-based approaches offer a more focused means of shedding light on "known unknowns". Continuous involvement: Involving patients throughout the research process and across a range of projects helps build expertise for patients and insight for HE researchers. Team building: Meaningful involvement creates a shared sense of ownership of the research and, over time, helps to develop a team ethos, enhancing the positive impacts of involvement. Sensitivity: HE research can be perceived as technical and impersonal. Addressing this requires sensitivity, clarity, and an honest and open approach. There is increased recognition that patient contributors are experts at providing a "lived experience" perspective, in the way that clinicians are experts at providing an overview of conditions and HEs are experts in the methodology of their discipline. We hope these "PACTS Principles" complement existing PPI approaches and provide a useful foundation for health economists considering patient involvement.
| S-EPMC7548133 | biostudies-literature
Project description:Public sources fund the majority of UK infection research, but citizens currently have no formal role in resource allocation. To explore the feasibility and willingness of citizens to engage in strategic decision making, we developed and tested a practical tool to capture public priorities for research.A scenario including six infection themes for funding was developed to assess citizen priorities for research funding. This was tested over two days at a university public festival. Votes were cast anonymously along with rationale for selection. The scenario was then implemented during a three-hour focus group exploring views on engagement in strategic decisions and in-depth evaluation of the tool.188/491(38%) prioritized funding research into drug-resistant infections followed by emerging infections(18%). Results were similar between both days. Focus groups contained a total of 20 citizens with an equal gender split, range of ethnicities and ages ranging from 18 to >70 years. The tool was perceived as clear with participants able to make informed comparisons. Rationale for funding choices provided by voters and focus group participants are grouped into three major themes: (i) Information processing; (ii) Knowledge of the problem; (iii) Responsibility; and a unique theme within the focus groups (iv) The potential role of citizens in decision making. Divergent perceptions of relevance and confidence of "non-experts" as decision makers were expressed.Voting scenarios can be used to collect, en-masse, citizens' choices and rationale for research priorities. Ensuring adequate levels of citizen information and confidence is important to allow deployment in other formats.
| S-EPMC5750690 | biostudies-other
Project description:Brentuximab vedotin (BV), a potent antibody-drug conjugate, targets the CD30 antigen. Owing to the remarkable efficacy shown in CD30-positive lymphomas, such as Hodgkin's lymphoma and systemic anaplastic large-cell lymphoma, BV was granted accelerated approval in 2011 by the US Food and Drug Administration. Thereafter, many large-scale trials in various situations have been performed, which led to extensions of the original indication. The aim of this review was to describe the latest updates on clinical trials of BV and the in-practice guidance for the use of BV.
| S-EPMC5762734 | biostudies-literature