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.

How to improve diversity in patient and public involvement

2021 ◽  
pp. 1-8
Author(s):  
Rebecca Golenya ◽  
George D Chloros ◽  
Michalis Panteli ◽  
Peter V Giannoudis ◽  
Anthony Howard
Keyword(s):  
Lived Experiences ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Barriers To Participation ◽  
The Public ◽  
Common Barriers ◽  
Quality Of Research

Patient and public involvement involves ascertaining the opinions of and collaborating with patients and members of the public to holistically improve the quality of research. Patient and public involvement provides patients with a platform to use and share their lived experiences. This allows healthcare professionals to gain a deeper appreciation of the patient's perspective, which enables future research to be more patient centred and tailored to patients' requirements. Patient and public involvement aims to broadly encapsulate the opinions of the public, so ensuring diversity is recommended. This article provides a practical framework to increase diversity and engage hard-to-reach demographics in patient and public involvement. It highlights some common barriers to participation and methods for overcoming this, describes sampling frameworks and provides examples of how these have been adopted in practice.

scholarly journals Key stakeholders’ views, experiences and expectations of patient and public involvement in healthcare professions’ education: a qualitative study

2021 ◽  
Author(s):  
Megan Cullen ◽  
Cathal Cadogan ◽  
Susmi George ◽  
Siobhan Murphy ◽  
Siobhan Freeney ◽  
...  
Keyword(s):  
Focus Groups ◽  
Public Involvement ◽  
Health Professions ◽  
Patient And Public Involvement ◽  
Health Professions Education ◽  
Multiple Perspectives ◽  
Group Setting ◽  
The Public ◽  
Training Requirements ◽  
Key Stakeholders

Abstract Background Patients and the public have an integral role in educating healthcare professionals. Authentic partnerships between higher education institutions and patients and the public are essential. This study examined key stakeholders’ views, experiences and expectations of patient and public involvement (PPI) including the nature of the involvement and requirements for partnership. Methods Purposive and snowball sampling was used to recruit key stakeholders, including patients and members of the public involved in health professions education, and academics interested in PPI. Focus groups were held with patient and public participants, providing the opportunity to gain multiple perspectives in an interactive group setting. Academics with an interest in PPI were interviewed using a semi-structured approach. Topic guides were derived from the literature and piloted prior to data collection. Focus groups and interviews were conducted until data saturation was achieved. All data was audio-recorded, transcribed, anonymised and thematically analysed. Results Four focus groups were conducted involving 23 patient and public participants (median number of participants per focus group of 6). Nine interviews were conducted with academics (face-to-face [n=8] or by telephone [n=1]). Five themes were developed: previous experiences of PPI, training requirements, challenges/barriers to PPI, facilitators of PPI and future ideas for PPI. All participants held positive views of the value of PPI. Participants had mixed views in terms of training, which depended on the level of involvement, but similar views on the challenges and facilitators for PPI in education. There was agreement that PPI requires institutional vision and investment to build strong relationships and a culture of PPI best practice. Conclusion There is a need for more strategic and formal involvement of patients and the public to ensure that that PPI becomes sustainably embedded in health professions education.

scholarly journals Patient and public involvement in numerical aspects of trials: a mixed methods theory-informed survey of trialists’ current practices, barriers and facilitators

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e046977
Author(s):  
Beatriz Goulao ◽  
Camille Poisson ◽  
Katie Gillies
Keyword(s):  
Mixed Methods ◽  
Online Survey ◽  
Public Involvement ◽  
Theoretical Domains Framework ◽  
Patient And Public Involvement ◽  
Barriers And Facilitators ◽  
Future Research ◽  
Mixed Methods Approach ◽  
Scarce Resources ◽  
The Public

ObjectiveWe aimed to find out if trialists involve patients and the public in numerical aspects of trials, how and what are the barriers and facilitators to doing it.DesignWe developed a survey based on the Theoretical Domains Framework. We used a mixed methods approach to analyse the data and to identify important domains.SettingOnline survey targeting UK-based trial units.ParticipantsStakeholders working in UK-based clinical trials, 18 years old or over, understand English and agree to take part in the study.Outcome measuresTrialists’ behaviour of involving patients and the public in numerical aspects of trials and its determinants.ResultsWe included 187 respondents. Majority were female (70%), trial managers (67%) and involved public and patient partners in numerical aspects of trials (60%). We found lack of knowledge, trialists’ perception of public and patient partners’ skills, capabilities and motivations, scarce resources, lack of reinforcement, and lack of guidance were barriers to involving public and patient partners in numerical aspects of trials. Positive beliefs about consequences were an incentive to doing it.ConclusionsMore training, guidance and funding can help trialists involve patient and public partners in numerical aspects, although they were uncertain about public and patient partners’ motivation to be involved. Future research should focus on identifying public and patient partners’ motivations and develop strategies to improve the communication of numerical aspects.

scholarly journals Patient and public involvement in a study of multimedia clinical trial information for children, young people and families

2020 ◽  
Vol 4 (1) ◽  
pp. 47-65
Author(s):  
Rebecca Sheridan ◽  
Jennifer Preston ◽  
Simon R Stones ◽  
Sammy Ainsworth ◽  
Danielle Horton Taylor ◽  
...  
Keyword(s):  
Young People ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Research Practice ◽  
The Public ◽  
Specific Input ◽  
The People ◽  
Clinical Trial Information

There is increasing recognition of the need to involve the public in health research, but accounts of how best to achieve this are scarce. This article describes public involvement in the TRials Engagement in Children and Adolescents (TRECA) study, which is developing and evaluating multimedia information resources to inform children, young people and their familes about clinical trials. A dedicated group of young people with long-term health conditions and their parents met regularly throughout the study; further involvement was sought when specific input was required. Review of formal impact records and informal discussions highlighted how public involvement can positively influence research practice and the people involved. By detailing the methods of involvement used, this work also provides guidance for successfully implementing public involvement in research, and highlights challenges that should be considered in future research projects.

scholarly journals Google search data as a novel adjunct to patient and public involvement in rheumatology research

2020 ◽  
Author(s):  
Mrinalini Dey ◽  
Sizheng Steven Zhao
Keyword(s):  
Focus Groups ◽  
Public Involvement ◽  
Cost Effective ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Face To Face ◽  
Search Data ◽  
Query Tool ◽  
Public Views ◽  
Google Search

Abstract Patient and public involvement is essential in the design and implementation of research studies to ensure research remains relevant and in line with public priorities. Public views on a given area of research may be sought via platforms such as focus groups or surveys. Here, we present the use of an openly available Google search data query tool, which may be used alongside traditional forms of patient and public involvement in research to highlight public perceptions and priorities. We used an online search query tool (“AnswerThePublic.com”) to explore public Google searches relating to “arthritis,” and an exemplar rheumatic disease, “rheumatoid arthritis.” The most common searches relating to these diseases included quality of life, treatment, prognosis, as well as impacts on life, including work. However, they also reveal concerns that may be more difficult to elicit in face-to-face focus groups, such as questions on alcohol consumption in arthritis, and impacts on mental health. Using public search engine data in research, alongside the important traditional methods of patient and public involvement, is a cost-effective and time-efficient method of gauging public views and concerns on a given topic. It may facilitate broad scoping searches of public priorities and help to guide future research questions.

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

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 Patient and public involvement and engagement: Practice case study with reflections and learnings from a small rural district general hospital

2021 ◽  
Vol 5 (2) ◽  
Author(s):  
Zoë A. Sheppard ◽  
Sarah Williams ◽  
Richard Lawson ◽  
Kim Appleby
Keyword(s):  
General Hospital ◽  
Public Involvement ◽  
District General Hospital ◽  
Patient And Public Involvement ◽  
Rural District ◽  
Relevant Research ◽  
The Public ◽  
Research Volunteers ◽  
Large Groups

The notion of patient and public involvement and engagement (PPIE) in research has been around for some time, and it is considered essential to ensure high-quality relevant research that is shared and that will make a difference. This case study of practice aims to share the PPIE practice from Dorset County Hospital NHS Foundation Trust, a small rural district general hospital. It describes the process of recruiting patients and members of the public as research volunteers, as well as the plethora of engagement and involvement activities with which they have been involved to date. This is followed by a reflection on the process and an overview of plans for the future, highlighting key challenges as well as learnings. A dedicated role to support/oversee PPIE activities is recommended to coordinate large groups of research volunteers, as well as to monitor the important impact of their input, which is considerable. Increasing diversity and access to under-served groups, and embedding the research volunteer role within the wider clinical research team, are also highlighted as fundamental challenges, as well as opportunities to make the most from this valuable resource. The case study of practice puts forward a recommendation to all research departments to embed PPIE in all of the work that they do.

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