scholarly journals Description and Evaluation of the First National Patient and Public Involvement Day for Thyroid Eye Disease in the United Kingdom

Thyroid ◽  
2014 ◽  
Vol 24 (9) ◽  
pp. 1400-1406 ◽  
Author(s):  
Henry B. Smith ◽  
Carol Porteous ◽  
Catey Bunce ◽  
Karen Bonstein ◽  
Janis Hickey ◽  
...  
Keyword(s):  
United Kingdom ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Thyroid Eye Disease ◽  
Eye Disease ◽  
The United Kingdom ◽  
National Patient

scholarly journals Management of thyroid eye disease in the United Kingdom: A multi-centre thyroid eye disease audit

Orbit ◽  
2017 ◽  
Vol 36 (3) ◽  
pp. 159-169 ◽  
Author(s):  
F. E. Mellington ◽  
C. M. Dayan ◽  
A. J. Dickinson ◽  
J. L. Hickey ◽  
C. J. MacEwen ◽  
...  
Keyword(s):  
United Kingdom ◽  
Thyroid Eye Disease ◽  
Eye Disease ◽  
The United Kingdom

scholarly journals PATIENT AND PUBLIC INVOLVEMENT IN EARLY AWARENESS AND ALERT ACTIVITIES: AN EXAMPLE FROM THE UNITED KINGDOM

2018 ◽  
Vol 34 (1) ◽  
pp. 10-17 ◽  
Author(s):  
Sue Simpson ◽  
Alison Cook ◽  
Kathryn Miles
Keyword(s):  
United Kingdom ◽  
Web Site ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Early Assessment ◽  
The Public ◽  
Health Technologies ◽  
The United Kingdom ◽  
Horizon Scanning ◽  
System Input

Objectives: The aim of this study is to report on the experiences, benefits, and challenges of patient and public involvement and engagement (PPIE) from a publicly funded early awareness and alert (EAA) system in the United Kingdom.Methods: Using email, telephone, a Web site portal, Twitter and focus groups, patients and the public were involved and engaged in the recognized stages of an EAA system: identification, filtration, prioritization, early assessment, and dissemination.Results: Approaches for PPIE were successfully integrated into all aspects of the National Institute for Health Research Horizon Scanning Research and Intelligence Centre's EAA system. Input into identification activities was not as beneficial as involvement in prioritization and early assessment. Patients gave useful insight into the Centre's Web site and engaging patients using Twitter has enabled the Centre to disseminate outputs to a wider audience.Conclusions: EAA systems should consider involving and engaging with patients and the public in identification, prioritization, and assessment of emerging health technologies where practicable. Further research is required to examine the value and impact of PPIE in EAA activities and in the early development of health technologies.

scholarly journals ‘I’m sure we made it a better study…’: Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study

2017 ◽  
Vol 23 (1) ◽  
pp. 78-96 ◽  
Author(s):  
Carole Beighton ◽  
Christina Victor ◽  
Iain M Carey ◽  
Fay Hosking ◽  
Steve DeWilde ◽  
...  
Keyword(s):  
Intellectual Disabilities ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Self Confidence ◽  
The United Kingdom ◽  
Working Together ◽  
Adults With Intellectual Disabilities ◽  
Group Interviews

Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups’ unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice.

scholarly journals Using the United Kingdom standards for public involvement to evaluate the impact of public involvement in a multinational clinical study

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Kathy Seddon ◽  
Jim Elliott ◽  
Miriam Johnson ◽  
Clare White ◽  
Max Watson ◽  
...  
Keyword(s):  
United Kingdom ◽  
Clinical Study ◽  
Clinical Research ◽  
Public Involvement ◽  
Lead Author ◽  
National Study ◽  
The United Kingdom ◽  
Lay Members ◽  
The Uk ◽  
The Impact

Abstract Background The publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and expertise that lay people may offer to the development, conduct and dissemination of clinical research. The UK Standards provide a benchmark which researchers should aim to achieve, yet its implementation continues to be a step wise iterative process of change management. A recent evaluation by a regional research group has suggested that our understanding of PI is enhanced through reflection on the UK Standards. We report on the utility of PI in the design, conduct and dissemination of the HIDDen study, a national, multicentre clinical study based across three UK centres. Methods A retrospective review of PI within the HIDDen study was conducted using field notes taken by the lead author from interactions throughout their involvement as a lay representative on the study. Key members of the HIDDen study were interviewed and data analysed to explore adherence to the UK Standards. Results There was universal support for PI across the study management group with genuine inclusivity of lay members of the committee. All six of the UK Standards were met to varying degrees. The greatest opportunities lay in ‘working together’ and ‘support and learning’. There were challenges meeting ‘governance’ with evidence of participation in decision making but less evidence of opportunities in management, regulation, leadership. Conclusion This study concurs with previous research supporting the utility of the Standards in the conduct and evaluation of PI in clinical research. To our knowledge this is the first multi-national study to be evaluated against the UK Standards.

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