1,721,229 research outputs found
Recruiting and supporting consumers in prioritising research topics
No full textThis paper reports efforts to integrate consumer perspectives into the Health Technology Assessment (HTA) programme by recruiting and supporting consumer
The relationship between prioritising gaps in knowledge about the effects of treatment and identifying core outcome sets
No full textBackground: This study addresses the challenges of service users, clinicians and researchers working together to achieve two different goals:1) identifying the most important gaps in knowledge about the effects of treatments (treatment uncertainties),2) identifying a core set of outcomes to be used by triallists and systematic reviewers.Service users and clinicians have similar roles for both challenges: deciding which ‘treatment uncertainties’ and ‘core outcomes’ are important to them. Researchers have had a greater role in identifying core outcome sets than they have had in identifying important treatment uncertainties. This study uses the example of preterm birth to explore how the roles of these groups differ for achieving the two different goals, and how methods of working together differ. Preterm birth is the most important single determinant of adverse infant outcome in terms of: survival; quality of life; psychosocial and emotional impact on the family; and costs for health services. The combination of highly technical research and highly emotive issues presents particular challenges to partnership working. Methods: A James Lind Alliance Priority Setting Partnership will be established to identify treatment uncertainties shared by service users and clinicians. Simultaneous discussions between service users, clinicians and researchers will consider how best to draw on the priority setting work to inform the development of a core set of outcomes. Diaries, observations and interviews will investigate the roles of the different players as each stream of work progresses.Results: This poster will present an evolving study design for identifying both ‘treatment uncertainties’ and core outcome sets. It will consider the new challenges are they appear, and suggest possible solutions.Conclusion: Efforts to identify treatment uncertainties and core outcome sets share principles of being research based and collaborative, but they draw on research in different ways and shape collaborations differently. <br/
Patient and public perspectives shaping scientific and medical research: panels for data, discussions and decisions
No full textThis paper explores the role of patient panels for shaping research for health, scientific research about health and illness, and applied medical research. After examining the history and purposes of involving patients in discussions and decision making for research, it outlines the expertise and skills required if panels are to be successful. The paper also analyses existing guidance for panels that include patients. Panels benefit from the experiential knowledge of panel members, craft knowledge of panel facilitators, and organizational knowledge gained through previous experience of hosting panels. Guidance is available that addresses structures and resources (for panel funders) and interpersonal communication and group dynamics (for panel members and facilitators). This guidance is most comprehensive when it has itself been developed by all these types of stakeholders
The process and outcomes of setting research priorities about preterm birth – a collaborative partnership
No full textTraditionally researchers, funders or policy makers have decided the future research agenda, rather than the service users or clinicians who deal with the consequences of the health condition every day. This article presents the process and outcomes of a collaborative partnership between patients, parents, families and healthcare professionals to prioritise the uncertainties about preterm birth. The Top 15 preterm birth research priorities are described.</p
Improving transparency and accountability of priority setting exercises: time for a reporting guideline?
No full textObjectives:1. To explore the need for a reporting guideline for research priority setting exercises.2. To discuss checklist items for a reporting guideline for research priority setting exercises.Background: concerns about approximately 85% of biomedical research being wasted has led to a flood of priority-setting exercises, not only to prevent conduct of redundant research, but also to ensure optimum usage of resources. The reporting quality of priority-setting exercises, as with other publication types, might vary, hampering the ability to see how priorities were set to ensure transparency and accountability for the process.Description: the workshop will start with a presentation on a suggested structure for reporting a research priority-setting exercise giving examples from the literature. Following this, participants will have a hands-on exercise to evaluate reporting of certain articles on this topic. We finish the session with a facilitated discussion to develop a draft for reporting items for research priority setting.<br/
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