Patient and public involvement in the design of a clinical trial to investigate the role of posterior shoulder tightness in patients with shoulder impingement

2016 ◽  
Vol 25 ◽  
pp. e156
Author(s):  
K. Hall ◽  
D. Barron ◽  
C. Ridehalgh ◽  
A. Moore
Keyword(s):  
Clinical Trial ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Shoulder Impingement ◽  
Posterior Shoulder ◽  
Posterior Shoulder Tightness

scholarly journals ‘Give Us The Tools!’: development of knowledge transfer tools to support the involvement of patient partners in the development of clinical trial protocols with patient-reported outcomes (PROs), in accordance with SPIRIT-PRO Extension

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e046450
Author(s):  
Samantha Cruz Rivera ◽  
Richard Stephens ◽  
Rebecca Mercieca-Bebber ◽  
Ameeta Retzer ◽  
Claudia Rutherford ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Patient Reported Outcome ◽  
Flow Diagram ◽  
Additional Patient ◽  
The Public ◽  
Patient Reported ◽  
Trial Protocols ◽  
User Friendly

Objectives(a) To adapt the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT)-patient-reported outcome (PRO) Extension guidance to a user-friendly format for patient partners and (b) to codesign a web-based tool to support the dissemination and uptake of the SPIRIT-PRO Extension by patient partners.DesignA 1-day patient and public involvement session.ParticipantsSeven patient partners.MethodsA patient partner produced an initial lay summary of the SPIRIT-PRO guideline and a glossary. We held a 1-day PPI session in November 2019 at the University of Birmingham. Five patient partners discussed the draft lay summary, agreed on the final wording, codesigned and agreed the final content for both tools. Two additional patient partners were involved in writing the manuscript. The study compiled with INVOLVE guidelines and was reported according to the Guidance for Reporting Involvement of Patients and the Public 2 checklist.ResultsTwo user-friendly tools were developed to help patients and members of the public be involved in the codesign of clinical trials collecting PROs. The first tool presents a lay version of the SPIRIT-PRO Extension guidance. The second depicts the most relevant points, identified by the patient partners, of the guidance through an interactive flow diagram.ConclusionsThese tools have the potential to support the involvement of patient partners in making informed contributions to the development of PRO aspects of clinical trial protocols, in accordance with the SPIRIT-PRO Extension guidelines. The involvement of patient partners ensured the tools focused on issues most relevant to them.

scholarly journals Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis

BMJ ◽  
2018 ◽  
pp. k4738 ◽  
Author(s):  
Joanna C Crocker ◽  
Ignacio Ricci-Cabello ◽  
Adwoa Parker ◽  
Jennifer A Hirst ◽  
Alan Chant ◽  
...  
Keyword(s):  
Systematic Review ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Lived Experience ◽  
Odds Ratio ◽  
Public Involvement ◽  
Meta Analysis ◽  
Patient And Public Involvement ◽  
Retention Rates ◽  
The Impact

AbstractObjectiveTo investigate the impact of patient and public involvement (PPI) on rates of enrolment and retention in clinical trials and explore how this varies with the context and nature of PPI.DesignSystematic review and meta-analysis.Data sourcesTen electronic databases, including Medline, INVOLVE Evidence Library, and clinical trial registries.Eligibility criteriaExperimental and observational studies quantitatively evaluating the impact of a PPI intervention, compared with no intervention or non-PPI intervention(s), on participant enrolment and/or retention rates in a clinical trial or trials. PPI interventions could include additional non-PPI components inseparable from the PPI (for example, other stakeholder involvement).Data extraction and analysisTwo independent reviewers extracted data on enrolment and retention rates, as well as on the context and characteristics of PPI intervention, and assessed risk of bias. Random effects meta-analyses were used to determine the average effect of PPI interventions on enrolment and retention in clinical trials: main analysis including randomised studies only, secondary analysis adding non-randomised studies, and several exploratory subgroup and sensitivity analyses.Results26 studies were included in the review; 19 were eligible for enrolment meta-analysis and five for retention meta-analysis. Various PPI interventions were identified with different degrees of involvement, different numbers and types of people involved, and input at different stages of the trial process. On average, PPI interventions modestly but significantly increased the odds of participant enrolment in the main analysis (odds ratio 1.16, 95% confidence interval and prediction interval 1.01 to 1.34). Non-PPI components of interventions may have contributed to this effect. In exploratory subgroup analyses, the involvement of people with lived experience of the condition under study was significantly associated with improved enrolment (odds ratio 3.14v1.07; P=0.02). The findings for retention were inconclusive owing to the paucity of eligible studies (odds ratio 1.16, 95% confidence interval 0.33 to 4.14), for main analysis).ConclusionsThese findings add weight to the case for PPI in clinical trials by indicating that it is likely to improve enrolment of participants, especially if it includes people with lived experience of the health condition under study. Further research is needed to assess which types of PPI work best in particular contexts, the cost effectiveness of PPI, the impact of PPI at earlier stages of trial design, and the impact of PPI interventions specifically targeting retention.Systematic review registrationPROSPERO CRD42016043808.

scholarly journals The role of patient and public involvement in oral health and HIV/AIDS research, practice and policy

Oral Diseases ◽  
2020 ◽  
Vol 26 (S1) ◽  
pp. 117-122 ◽  
Author(s):  
Vaishali Sharma Mahendra ◽  
Amitha Ranauta ◽  
Anandi Yuvraj ◽  
Anthony J. Santella ◽  
Aditia Taslim ◽  
...  
Keyword(s):  
Oral Health ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Practice ◽  
Aids Research ◽  
Hiv Aids

scholarly journals Patient and public involvement in the early stages of clinical trial development: a systematic cohort investigation

BMJ Open ◽  
2014 ◽  
Vol 4 (7) ◽  
pp. e005234-e005234 ◽  
Author(s):  
C. Gamble ◽  
L. Dudley ◽  
A. Allam ◽  
P. Bell ◽  
H. Goodare ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Early Stages

‘Patient Zero’

2013 ◽  
Vol 17 (1) ◽  
pp. 5-21
Author(s):  
Stephen J. Macdonald ◽  
David Taylor-Gooby
Keyword(s):  
General Practitioners ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
North East ◽  
The North ◽  
Advisory Groups ◽  
Healthcare It ◽  
Health Practitioners ◽  
Major Shift

Over the last three years, there has been a major shift in healthcare policy within England. This has radically altered the relationship between General Practitioners (GPs) and patients. This article examines the role of patient and public involvement within the National Health Service (NHS) from the perspective of volunteers and health practitioners. The aim of the study is to explore how different models of patient and public involvement (PPI) are characterised through ideological perspectives which construct the goals and motivations of service users and health practitioners. This article draws on data from a small qualitative study of 16 participants analysing different narratives and experiences of patient and public involvement within the North East of England. The study analyses data from health professionals, including General Practitioners and health managers, and patient volunteers who make up part of a range of different health advisory groups in the NHS. Whilst all respondents agree about the importance of public involvement to assist localised NHS healthcare, it should be noted that what is meant by patient and public involvement in this study is somewhat unclear for people involved in the process. The research concludes by illustrating how practitioners’ and volunteers’ interpretations of patient and public involvement diverge in terms of their expressed motivations, aims, goals and expectations.

scholarly journals P446 Patient and public involvement in a clinical trial for perianal Crohn’s fistula

2018 ◽  
Vol 12 (supplement_1) ◽  
pp. S330-S330
Author(s):  
K Sahnan ◽  
A Verjee ◽  
S Blackwell ◽  
R Sawyer ◽  
S Mannick ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Crohn’S Fistula

scholarly journals Understanding the role of patient and public involvement in renal dietetic research

2017 ◽  
Vol 4 (2) ◽  
pp. 23-32 ◽  
Author(s):  
Andrew Morris ◽  
Deborah Biggerstaff ◽  
Nithya Krishnan ◽  
Deborah Lycett
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement

scholarly journals Achieving effective patient and public involvement in international clinical trials in neurology

2019 ◽  
Vol 10 (3) ◽  
pp. 265-272 ◽  
Author(s):  
Emma C. Tallantyre ◽  
Nikos Evangelou ◽  
Clare Bale ◽  
Burhan Z. Chaudhry ◽  
Emma H. Gray ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Randomized Controlled Trials ◽  
Research Team ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Controlled Trials ◽  
Framework Analysis ◽  
Randomized Controlled ◽  
Structured Approach

There is a growing need for patient and public involvement (PPI) to inform the way that research is developed and performed. International randomized controlled trials are particularly likely to benefit from PPI, but guidance is lacking on how or when it should be incorporated. In this article, we describe the PPI process that occurred during the design and initiation of an international treatment clinical trial in MS. PPI was incorporated using a structured approach, aiming to minimize bias and achieve equivalence in study design, implementation, and interpretation. Methods included PPI representation within the study research team, and the use of focus groups, analyzed using thematic framework analysis. We report the outcomes of PPI and make recommendations on its use in other neurology clinical trials. By sharing our model for PPI, we aim to maximize effectiveness of future public involvement and to allow its effect to be better evaluated.

scholarly journals Individuals’ Decision to Disclose a Diagnosis of Dementia and the Development of an Online Empowerment Intervention

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 589-590
Author(s):  
Mauricio Molinari Ulate ◽  
Jem Bhatt ◽  
Jennifer Lynch ◽  
Katrina Scior ◽  
Georgina Charlesworth ◽  
...  
Keyword(s):  
Public Involvement ◽  
Adverse Reactions ◽  
Psychosocial Health ◽  
Patient And Public Involvement ◽  
Dementia Diagnosis ◽  
Factors Influencing ◽  
People With Dementia ◽  
Complex Process ◽  
Diagnosis Of Dementia

Abstract Learning to live with a diagnosis of dementia is a complex process. Many people affected by dementia choose not to disclose the diagnosis to others and avoid social activities due to fear of others’ adverse reactions. This in turn can limit their social participation and negatively affect their psychosocial health. A systematic review explored factors influencing the decision to disclose or conceal a dementia diagnosis to one’s social network, including individuals’ attitudes and experiences regarding this decision. The sixteen studies included reveal the complexity of this decision. Findings highlight the role of stigma and individuals’ wishes to remain ‘normal’, but also the need of explaining what has changed. Results were further discussed with people with dementia and informal caregivers as part of patient and public involvement. End users expressed their attitudes, needs, and wishes towards the design of an online empowerment intervention supporting disclosure decision-making in people affected by dementia.

The Role of Patient and Public Involvement in Evidence-Based Dermatology

2014 ◽  
pp. 12-16
Author(s):  
Carron Layfield ◽  
Amanda Roberts ◽  
Jason Simons ◽  
Colette O'Sullivan ◽  
Anjna Rani ◽  
...  
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement ◽  
Evidence Based
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