OP0251-PARE Patient and Public Involvement in Design, Analysis and Reporting of A Public Priority Setting Exercise for Research in Osteoporosis

2016 ◽  
Vol 75 (Suppl 2) ◽  
pp. 153.2-153 ◽  
Author(s):  
C. Jinks ◽  
W. Mahmood ◽  
P. Jayakumar ◽  
S. Gwilym ◽  
S. Blackburn ◽  
...  
Keyword(s):  
Priority Setting ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Design Analysis ◽  
Priority Setting Exercise ◽  
Public Priority

scholarly journals Participatory Research: A Priority Setting Partnership for Chronic Musculoskeletal Pain in Denmark

2021 ◽  
Author(s):  
Kristian Damgaard Lyng ◽  
Jesper Bie Larsen ◽  
Kathryn Birnie ◽  
Jennifer Stinson ◽  
Morten Sebastian Hoegh ◽  
...  
Keyword(s):  
Musculoskeletal Pain ◽  
Priority Setting ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Chronic Musculoskeletal Pain ◽  
Pain Patient ◽  
Specific Research ◽  
Research Questions ◽  
Priority Setting Partnership

Background Patient and stakeholder engagements in research have increasingly gained attention in healthcare and healthcare-related research. A common and rigorous approach to establish research priorities based on input from people and stakeholders is the James Lind Alliance Priority Setting Partnership (JLA-PSP). The aim of this study was to establish research priorities for chronic musculoskeletal (MSK) pain by engaging with humans living with chronic MSK pain, relatives to humans living with chronic MSK pain, healthcare professionals (HCP), and researchers working with chronic MSK pain. Methods This JLA-PSP included a nation-wide survey in Denmark, an interim prioritisation, and an online consensus building workshop. The information gained from this was the basis for developing the final list of specific research priorities within chronic MSK pain. Results In the initial survey, 1010 respondents (91% people living with chronic MSK pain/relatives, 9% HCPs/researchers) submitted 3121 potential questions. These were summarised into 19 main themes and 36 sub-themes. In the interim prioritisation exercise, 51% people living with pain/relatives and 49% HCPs/researchers reduced the list to 33 research questions prior to the final priority setting workshop. 23 participants attended the online workshop (12 people/relatives, 10 HCPs, and 1 researcher) who reached consensus for the most important research priorities after two rounds of discussion of each question. Conclusion This study identified several specific research questions generated by people living with chronic MSK pain, relatives, HCPs, and researchers. The stakeholders proposed prioritization of the healthcare system's ability to support patients, focus on developing coherent pathways between sectors and education for both patients and HCP. These research questions can form the basis for future studies, funders, and be used to align research with end-users priorities Keywords Chronic musculoskeletal pain, patient and public involvement, research priorities

scholarly journals Patient and public involvement in numerical aspects of trials (PoINT): exploring patient and public partners experiences and identifying stakeholder priorities

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Beatriz Goulao ◽  
Hanne Bruhn ◽  
Marion Campbell ◽  
Craig Ramsay ◽  
Katie Gillies
Keyword(s):  
Focus Groups ◽  
Priority Setting ◽  
Quantitative Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
The Public ◽  
James Lind Alliance ◽  
Communication Needs ◽  
Level Of Understanding

Abstract Background and aims Patient and public involvement is increasingly common in trials, but its quality remains variable in a lot of settings. Many key decisions in trials involve numbers, but patients are rarely involved in those discussions. We aimed to understand patient and public partners’ experiences and opinions regarding their involvement in numerical aspects of research and discuss and identify priorities, according to multiple stakeholders, around the most important numerical aspects in trials to involve patients and the public in. Methods The study had two stages: (1) online focus groups with patient and public partners recruited via online platforms and analysed using inductive thematic analysis and (2) online priority setting meeting with UK- and Ireland-based stakeholders and following James Lind Alliance methodology. Pre-selected numerical aspects were introduced prior to the meeting and discussed and prioritised based on a voting system. Results In stage 1, we held two focus groups with patient and public partners (n = 9). We identified four themes in the analysis: “Determinants of PPI in numerical aspects”, “Identity and roles”, “Impact of involving patients and the public in numerical aspects”. Patient and public partners believed being involved in numerical aspects of research is important and should be facilitated, but communication about these aspects needs to be clearer. An environment and relationship with researchers that facilitates that will include time for discussion, support to improve knowledge and confidence, clear language and definitions and trust. Patient and public partners perceive their role as bringing an outsider perspective and were mainly interested in involvement in assumptions and dissemination of quantitative research. They believed this can lead to more transparency and improve their experience by making involvement more meaningful. In stage 2, we identified twelve numerical aspects of trials to be prioritised. We held a priority setting meeting with 14 stakeholders, which led to the selection of three priority numerical aspects in patient and public involvement: target differences, interpretation of results and cost-effectiveness. Participants felt all aspects should be considered for involvement and their communication needs to ensure a shared level of understanding to avoid power imbalances. Conclusions Our work shows the importance of involving patient and public partners in numerical aspects of trials by assessing their experiences and motivations for the first time and discussing and prioritising which numerical aspects of trials are the most important for patients and the public to contribute to. Our research provides a platform for future efforts to improve patient and public involvement in trials and a prioritised set of future research foci.

What are Important Ways of Sharing Power in Health Research Priority Setting? Perspectives From People With Lived Experience and Members of the Public

2021 ◽  
pp. 155626462110132
Author(s):  
Bridget Pratt
Keyword(s):  
Lived Experience ◽  
Thematic Analysis ◽  
Priority Setting ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
The Public ◽  
The United Kingdom ◽  
Research Priority ◽  
Health Research Priority Setting

Community engagement (patient and public involvement) is gaining prominence in health research worldwide. But there remains limited ethical guidance on how to share power with communities in health research priority setting, particularly that which has been informed by the perspectives of those being engaged. This article provides initial evidence about what they think are important ways to share power when setting health research projects’ topics and questions. Twenty-two people with lived experience, engagement practitioners, and members of the public who have been engaged in health research in the United Kingdom and Australia were interviewed. Thematic analysis identified 15 key ways to share power, many of which are relational. This study further demonstrates that tensions exist between certain ways of sharing power in health research priority setting. More research is needed to determine how to navigate those tensions.

scholarly journals Future Research in Graves' Orbitopathy: From Priority Setting to Trial Design Through Patient and Public Involvement

Thyroid ◽  
2015 ◽  
Vol 25 (11) ◽  
pp. 1181-1184 ◽  
Author(s):  
Petros Perros ◽  
Colin M. Dayan ◽  
A. Jane Dickinson ◽  
Daniel G. Ezra ◽  
Janis L. Hickey ◽  
...  
Keyword(s):  
Priority Setting ◽  
Trial Design ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Graves Orbitopathy

Health technology assessment and priority setting for health policy in Sweden

2004 ◽  
Vol 20 (1) ◽  
pp. 44-54 ◽  
Author(s):  
Per Carlsson
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Health Technology Assessment ◽  
Priority Setting ◽  
Technology Assessment ◽  
Health Care Services ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Care Services

This article describes the development of health technology assessment (HTA) in Sweden, its influence on decision making, and its link with priority setting. Sweden has a well established governmental HTA body, the Swedish Council on Technology Assessment in Health Care (SBU), and an increasing number of regional/local HTA organizations. HTA has had an impact on clinical practice and is used to some extent in policy decisions. Several initiatives have now been taken to develop processes for open priority setting of health-care services. With the establishment of a new agency to undertake reimbursement decisions on pharmaceuticals, and greater patient and public involvement in decision making, it seems inevitable that HTA will play a more important role in priority setting in the near future.

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