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 How to incorporate patient and public perspectives into the design and conduct of research

F1000Research ◽  
2018 ◽  
Vol 7 ◽  
pp. 752 ◽  
Author(s):  
Pat Hoddinott ◽  
Alex Pollock ◽  
Alicia O'Cathain ◽  
Isabel Boyer ◽  
Jane Taylor ◽  
...  
Keyword(s):  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Ethical Considerations ◽  
The Public ◽  
Partnership Research ◽  
Public Perspectives ◽  
Quality Of Research ◽  
Research Funder

International government guidance recommends patient and public involvement (PPI) to improve the relevance and quality of research.  PPI is defined as research being carried out ‘with’ or ‘by’ patients and members of the public rather than ‘to’, ‘about’ or ‘for’ them (http://www.invo.org.uk/). Patient involvement is different from collecting data from patients as participants.  Ethical considerations also differ.  PPI is about patients actively contributing through discussion to decisions about research design, acceptability, relevance, conduct and governance from study conception to dissemination.  Occasionally patients lead or do research.  The research methods of PPI range from informal discussions to partnership research approaches such as action research, co-production and co-learning. This article discusses how researchers can involve patients when they are applying for research funding and considers some opportunities and pitfalls.  It reviews research funder requirements, draws on the literature and our collective experiences as clinicians, patients, academics and members of UK funding panels.

scholarly journals Why Do People Undergo THR and What Do They Expect to Gain—A Comparison of the Views of Patients and Health Care Professionals

2020 ◽  
Vol 7 (6) ◽  
pp. 1778-1787
Author(s):  
Shayan Bahadori ◽  
Sarah Collard ◽  
Jonathan Mark Williams ◽  
Ian Swain
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Public Involvement ◽  
Well Being ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Activity Monitors ◽  
Dog Walking ◽  
Future Research Project

Little concerted effort has been made to understand why individuals undergo total hip replacement (THR) surgery and their rehabilitation goals. Similarly, insight of views and perspective of health care professionals’ (HCPs) regarding surgery and what objective measures help them with decision-making is lacking. This patient and public involvement report aimed to explore both patients’ and HCPs’ perspectives of THR surgery. Twenty patients, 10 pre-THR, 10 post-THR, 9 physiotherapists, and 6 surgeons took part. Results suggest a consensus among patients and HCPs on pain reduction being the main reason for undergoing THR. The inability to carry out simple daily activities such as dog walking and sleep deprivation had a significant effect on patients’ mental and physical well-being. This article is the first to explore the views of THR patients and HCPs on reasons behind THR surgery amalgamated into a single report. As walking is important, wearable activity monitors are suggested as a possible motivator to enhance patient compliance to self-care rehabilitation and increase quality of life. A future research project on the use of such wearable activity monitors in enhancing mobility post-THR is therefore planned.

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 Who should I involve in my research and why? Patients, carers or the public?

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Kristina Staley ◽  
Jim Elliott ◽  
Derek Stewart ◽  
Roger Wilson
Keyword(s):  
Lived Experience ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Experiential Knowledge ◽  
Research Quality ◽  
The Public ◽  
Raising Awareness ◽  
Opportunities For Learning ◽  
Dissemination Of Research

AbstractPatient and public involvement in research helps to make it more relevant and useful to the end-users. Involvement influences the design, delivery and dissemination of research, ultimately leading to better services, treatments and care. Researchers are therefore keen to involve patients, carers and public in their work, but are sometimes uncertain about who to involve. Some confusion may arise from the terms used. The UK’s catch-all term ‘patient and public involvement’ suggests this is a single activity, that perhaps both ‘patient’ and ‘public’ input are needed, or that either will do. The terms ‘patient’, ‘carer’ and ‘public’ have been defined, but are not used consistently. In fact there are many different contexts for involvement and many different kinds of decisions made, which then determine whose input will be most valuable.Clarity about the ‘why’ can help answer the ‘who’ question. However, not all researchers are clear about the purpose of involvement. While it is often understood to have a moral purpose, or to improve research quality, this doesn’t always identify who needs to be involved. When learning is understood to be the purpose of involvement, then the most appropriate people to involve are those with relevant experiential knowledge. In research projects, these are people with lived experience of the topic being investigated. This could be patients, carers, members of the public or health professionals.In this article we discuss how involving people who do not have the relevant experiential ‘lived’ knowledge may contribute to ineffective or tokenistic involvement. These people are as likely as researchers to make assumptions, risking missing key insights or resulting in outcomes that are off-putting or even harmful to research participants.We conclude that greater attention needs to be given to the question of who to involve. Raising awareness of the significance of experiential knowledge and the contextual factors that determine whose input will be most useful will help everyone to understand their roles and improve the quality of involvement. It will help to maximise the opportunities for learning, increasing the likelihood of impact, and helping to achieve the ultimate goal of improved health and services.

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 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.

Assessments of User Comments With “Alternative Views” as a Function of Media Trust

2020 ◽  
pp. 1-12
Author(s):  
Marlene Kunst
Keyword(s):  
Online Discussions ◽  
Future Research ◽  
Political Issues ◽  
Argument Quality ◽  
The Public ◽  
Mainstream Media ◽  
User Comments ◽  
Media Trust ◽  
Heuristic Information Processing

Abstract. Comments sections under news articles have become popular spaces for audience members to oppose the mainstream media’s perspective on political issues by expressing alternative views. This kind of challenge to mainstream discourses is a necessary element of proper deliberation. However, due to heuristic information processing and the public concern about disinformation online, readers of comments sections may be inherently skeptical about user comments that counter the views of mainstream media. Consequently, commenters with alternative views may participate in discussions from a position of disadvantage because their contributions are scrutinized particularly critically. Nevertheless, this effect has hitherto not been empirically established. To address this gap, a multifactorial, between-subjects experimental study ( N = 166) was conducted that investigated how participants assess the credibility and argument quality of media-dissonant user comments relative to media-congruent user comments. The findings revealed that media-dissonant user comments are, indeed, disadvantaged in online discussions, as they are assessed as less credible and more poorly argued than media-congruent user comments. Moreover, the findings showed that the higher the participants’ level of media trust, the worse the assessment of media-dissonant user comments relative to media-congruent user comments. Normative implications and avenues for future research are discussed.

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 Defining standards in colorectal optimisation: a Delphi study protocol to achieve international consensus on key standards for colorectal surgery prehabilitation

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e047235
Author(s):  
Iona Pearson ◽  
Sue Blackwell ◽  
Rebecca Fish ◽  
Sarah Daniels ◽  
Malcolm West ◽  
...  
Keyword(s):  
Systematic Review ◽  
Colorectal Surgery ◽  
Outcome Measures ◽  
Delphi Study ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Patient And Public Involvement ◽  
International Consensus ◽  
Elective Colorectal Surgery ◽  
Patient Related Outcome

IntroductionPrehabilitation in colorectal surgery is evolving and may minimise postoperative morbidity and mortality. With many different healthcare professionals contributing to the prehabilitation literature, there is significant variation in reported primary endpoints that restricts comparison. In addition, there has been limited work on patient-related outcome measures suggesting that patients with colorectal cancer needs and issues are being overlooked. The Defining Standards in Colorectal Optimisation Study aims to achieve international consensus from all stakeholders on key standards to provide a framework for reporting future prehabilitation research.Methods and analysisA systematic review will identify key standards reported in trials of prehabilitation in colorectal surgery. Standards that are important to patients will be identified by a patient and public involvement (PPI) event. The longlist of standards generated from the systematic review and PPI event will be used to develop a three-round online Delphi process. This will engage all stakeholders (healthcare professionals and patients) both nationally and internationally. The results of the Delphi will be followed by a face-to-face interactive consensus meeting that will define the final standards for prehabilitation for elective colorectal surgery.Ethics and disseminationThe University of Glasgow College of Medical, Veterinary and Life Sciences Ethics Committee has approved this protocol, which is registered as a study (200190120) with the Core Outcome Measures in Effectiveness Trials Initiative. Publication of the standards developed by all stakeholders will increase the potential for comparative research that advances understanding of the clinical application of prehabilitation.PROSPERO registration numberCRD42019120381.

A Systematic Review of Replicative Self-Determination Intervention Studies

2019 ◽  
Vol 54 (1) ◽  
pp. 29-39
Author(s):  
John L. Luckner ◽  
Rashida Banerjee ◽  
Sara Movahedazarhouligh ◽  
Kaitlyn Millen
Keyword(s):  
Systematic Review ◽  
Intervention Studies ◽  
Self Determination ◽  
Future Research ◽  
Replication Studies ◽  
Research Designs ◽  
Replication Research ◽  
Quality Of Research

Current federal legislation emphasizes the use of programs, interventions, strategies, and activities that have been demonstrated through research to be effective. One way to increase the quantity and quality of research that guides practice is to conduct replication research. The purpose of this study was to undertake a systematic review of the replication research focused on self-determination conducted between 2007 and 2017. Using methods used by Cook and colleagues, we identified 80 intervention studies on topics related to self-determination, of which 31 were coded as replications. Intervention study trends, rate of replication studies, percentage of agreements between findings of original and replication studies, amount of author overlap, and types of research designs used are reported along with recommendations for future research.

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