scholarly journals Reaching consensus on reporting patient and public involvement (PPI) in research: methods and lessons learned from the development of reporting guidelines

BMJ Open ◽  
2017 ◽  
Vol 7 (10) ◽  
pp. e016948 ◽  
Author(s):  
Jo Brett ◽  
Sophie Staniszewska ◽  
Iveta Simera ◽  
Kate Seers ◽  
Carole Mockford ◽  
...  
Keyword(s):  
Public Involvement ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Lessons Learned ◽  
Reporting Guidelines ◽  
Consensus Development ◽  
Face To Face ◽  
Three Phase ◽  
Health And Social Care ◽  
The Impact

IntroductionPatient and public involvement (PPI) is inconsistently reported in health and social care research. Improving the quality of how PPI is reported is critical in developing a higher quality evidence base to gain a better insight into the methods and impact of PPI. This paper describes the methods used to develop and gain consensus on guidelines for reporting PPI in research studies (updated version of the Guidance for Reporting Patient and Public Involvement (GRIPP2)).MethodsThere were three key stages in the development of GRIPP2: identification of key items for the guideline from systematic review evidence of the impact of PPI on health research and health services, a three-phase online Delphi survey with a diverse sample of experts in PPI to gain consensus on included items and a face-to-face consensus meeting to finalise and reach definitive agreement on GRIPP2. Challenges and lessons learnt during the development of the reporting guidelines are reported.DiscussionThe process of reaching consensus is vital within the development of guidelines and policy directions, although debate around how best to reach consensus is still needed. This paper discusses the critical stages of consensus development as applied to the development of consensus for GRIPP2 and discusses the benefits and challenges of consensus development.

scholarly journals Person-centred medicines optimisation policy in England: an agenda for research on polypharmacy

2016 ◽  
Vol 18 (01) ◽  
pp. 24-34 ◽  
Author(s):  
Janet Heaton ◽  
Nicky Britten ◽  
Janet Krska ◽  
Joanne Reeve
Keyword(s):  
Public Involvement ◽  
Guideline Development ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Patient Experiences ◽  
Patient Perspectives ◽  
Critical Examination ◽  
Medicines Management ◽  
Health And Social Care ◽  
Medicines Optimisation

AimTo examine how patient perspectives and person-centred care values have been represented in documents on medicines optimisation policy in England.BackgroundThere has been growing support in England for a policy of medicines optimisation as a response to the rise of problematic polypharmacy. Conceptually, medicines optimisation differs from the medicines management model of prescribing in being based around the patient rather than processes and systems. This critical examination of current official and independent policy documents questions how central the patient is in them and whether relevant evidence has been utilised in their development.MethodsA documentary analysis of reports on medicines optimisation published by the Royal Pharmaceutical Society (RPS), The King’s Fund and National Institute for Health and Social Care Excellence since 2013. The analysis draws on a non-systematic review of research on patient experiences of using medicines.FindingsThe reports varied in their inclusion of patient perspectives and person-centred care values, and in the extent to which they drew on evidence from research on patients’ experiences of polypharmacy and medicines use. In the RPS report, medicines optimisation is represented as being a ‘step change’ from medicines management, in contrast to the other documents which suggest that it is facilitated by the systems and processes that comprise the latter model. Only The King’s Fund report considered evidence from qualitative studies of people’s use of medicines. However, these studies are not without their limitations.We suggest five ways in which researchers could improve this evidence base and so inform the development of future policy: by facilitating reviews of existing research; conducting studies of patient experiences of polypharmacy and multimorbidity; evaluating medicines optimisation interventions; making better use of relevant theories, concepts and tools; and improving patient and public involvement in research and in guideline development.

scholarly journals Mapping the impact of patient and public involvement on health and social care research: a systematic review

2012 ◽  
Vol 17 (5) ◽  
pp. 637-650 ◽  
Author(s):  
Jo Brett ◽  
Sophie Staniszewska ◽  
Carole Mockford ◽  
Sandra Herron-Marx ◽  
John Hughes ◽  
...  
Keyword(s):  
Systematic Review ◽  
Public Involvement ◽  
Social Care ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care ◽  
The Impact

Learning in lockdown: exploring the impact of COVID-19 on interprofessional education

2021 ◽  
Vol 29 (11) ◽  
pp. 648-652
Author(s):  
Alison Power ◽  
Michael Palapal Sy ◽  
Maggie Hutchings ◽  
Tracy Coleman ◽  
Alla El-Awaisi ◽  
...  
Keyword(s):  
Interprofessional Education ◽  
Social Care ◽  
Lessons Learned ◽  
Global Perspective ◽  
Face To Face ◽  
Perceptions And Attitudes ◽  
Health And Social Care ◽  
Rich Data ◽  
The Uk ◽  
The Impact

The COVID-19 pandemic has had a significant impact on the learning experiences of students undertaking health and social care programmes across the globe. In the UK, the Nursing and Midwifery Council introduced emergency standards for undergraduate programmes in 2020, making significant short-term changes to programme delivery. However, the mandate for all students to undertake interprofessional education remained. Interprofessional education is key to preparing students on health and social care programmes, as it enables students to work as effective members of multi-agency/multi-professional teams on qualification. It is an important element of training, as it has a direct impact on quality of care and service user experience. This series of articles will explore the experiences of ‘lockdown learning’ from the perspective of academics, students and service users from a global perspective in relation to the delivery of interprofessional education during the pandemic, which necessitated a wholesale move from face-to-face, blended and online learning to include emergency remote teaching. The series was written by members of the Centre for the Advancement of Interprofessional Education Research Subgroup (Interprofessional Education Experiences) and aims to identify barriers and facilitators to successful shared learning and provide suggestions for how lessons learned can be taken forward to further enhance this important element of pre-registration education. The perceptions and attitudes of academics and students on such comprehensive changes are a unique and rich data source to explore and inform future provision.

scholarly journals Patient and public involvement (PPI) in prisons: the involvement of people living in prison in the research process – a systematic scoping review

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Samantha Treacy ◽  
Steven Martin ◽  
Nelum Samarutilake ◽  
Tine Van Bortel
Keyword(s):  
Systematic Review ◽  
Scoping Review ◽  
Public Involvement ◽  
Social Care ◽  
Positive Impact ◽  
Research Process ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care

Abstract Background Patient and Public Involvement (PPI) in health and social care research is increasingly prevalent and is promoted in policy as a means of improving the validity of research. This also applies to people living in prison and using social care services. Whilst evidence for the effectiveness of PPI was limited and reviews of its application in prisons were not found, the infancy of the evidence base and moral and ethical reasons for involvement mean that PPI continues to be advocated in the community and in prisons. Objectives To conduct a review of the literature regarding the involvement of people or persons living in prison (PLiP) in health and social care research focused on: (i) aims; (ii) types of involvement; (iii) evaluations and findings; (iv) barriers and solutions; and (v) feasibility of undertaking a systematic review. Methods A systematic scoping review was undertaken following Arksey and O’Malley’s (International Journal of Social Research Methodology 8: 19-32, 2005) five-stage framework. A comprehensive search was conducted involving ten electronic databases up until December 2020 using patient involvement and context related search terms. A review-specific spreadsheet was created following the PICO formula, and a narrative synthesis approach was taken to answer the research questions. PRISMA guidelines were followed in reporting. Results 39 papers were selected for inclusion in the review. The majority of these took a ‘participatory’ approach to prisoner involvement, which occurred at most stages during the research process except for more ‘higher’ level research operations (funding applications and project management), and only one study was led by PLiPs. Few studies involved an evaluation of the involvement of PLiP, and this was mostly PLiP or researcher reflections without formal or independent analysis, and largely reported a positive impact. Barriers to the involvement of PLiP coalesced around power differences and prison bureaucracy. Conclusion Given the very high risk of bias arising from the available ‘evaluations’, it was not possible to derive firm conclusions about the effectiveness of PLiP involvement in the research process. In addition, given the state of the evidence base, it was felt that a systematic review would not be feasible until more evaluations were undertaken using a range of methodologies to develop the field further.

Developing the evidence base of patient and public involvement in health and social care research: the case for measuring impact

2011 ◽  
Vol 35 (6) ◽  
pp. 628-632 ◽  
Author(s):  
Sophie Staniszewska ◽  
Ade Adebajo ◽  
Rosemary Barber ◽  
Peter Beresford ◽  
Louca-Mai Brady ◽  
...  
Keyword(s):  
Public Involvement ◽  
Social Care ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care

scholarly journals Barriers and Enablers in Implementing Electronic Consultations in Primary Care: Scoping Review (Preprint)

2020 ◽  
Author(s):  
Rebecca Baines ◽  
John Tredinnick-Rowe ◽  
Ray Jones ◽  
Arunangsu Chatterjee
Keyword(s):  
Primary Care ◽  
Scoping Review ◽  
Public Involvement ◽  
Grey Literature ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Reference List ◽  
Multiple Perspectives ◽  
Health And Social Care ◽  
The Impact

BACKGROUND Often promoted as a way to address increasing demands, improve patient accessibility, and improve overall efficiency, electronic consultations are becoming increasingly common in primary care, particularly in light of the current COVID-19 pandemic. However, despite their increasing use, a theoretically informed understanding of the factors that support and inhibit their effective implementation is severely limited. OBJECTIVE With this scoping review, we sought to identify the factors that support and inhibit the implementation of electronic consultations in primary care. METHODS In total, 5 electronic databases (PubMed, Medline, Embase, CINAHL, and PsycINFO) were systematically searched for studies published in 2009-2019 that explored the impact and/or implementation of electronic consultations in primary care. Database searches were supplemented by reference list and grey literature searches. Data were analyzed using inductive thematic analysis and synthesized using Normalization Process Theory (NPT). RESULTS In total, 227 articles were initially identified and 13 were included in this review. The main factors found to hinder implementation included awareness and expectations; low levels of engagement; perceived suitability for all patient groups, conditions, and demographics; cost; and other contextual factors. Reports of information technology reliability and clinical workload duplication (as opposed to reduction) also appeared detrimental. Conversely, the development of protocols and guidance; patient and staff education; strategic marketing; and patient and public involvement were all identified as beneficial in facilitating electronic consultation implementation. CONCLUSIONS This review highlights the need for proactive engagement with patients and staff to facilitate understanding and awareness, process optimization, and delivery of coherent training and education that maximizes impact and success. Although the necessity to use online methods during the COVID-19 pandemic may have accelerated awareness, concerns over workload duplication and inequality of access may remain. Future research should explore health inequalities in electronic consultations and their economic impacts from multiple perspectives (eg, patient, professional, and commissioner) to determine their potential value. Further work to identify the role of meaningful patient involvement in digital innovation, implementation, and evaluation is also required following the rapid digitization of health and social care.

scholarly journals Barriers and Enablers in Implementing Electronic Consultations in Primary Care: Scoping Review

10.2196/19375 ◽  
2020 ◽  
Vol 22 (11) ◽  
pp. e19375
Author(s):  
Rebecca Baines ◽  
John Tredinnick-Rowe ◽  
Ray Jones ◽  
Arunangsu Chatterjee
Keyword(s):  
Primary Care ◽  
Scoping Review ◽  
Public Involvement ◽  
Grey Literature ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Reference List ◽  
Multiple Perspectives ◽  
Health And Social Care ◽  
The Impact

Background Often promoted as a way to address increasing demands, improve patient accessibility, and improve overall efficiency, electronic consultations are becoming increasingly common in primary care, particularly in light of the current COVID-19 pandemic. However, despite their increasing use, a theoretically informed understanding of the factors that support and inhibit their effective implementation is severely limited. Objective With this scoping review, we sought to identify the factors that support and inhibit the implementation of electronic consultations in primary care. Methods In total, 5 electronic databases (PubMed, Medline, Embase, CINAHL, and PsycINFO) were systematically searched for studies published in 2009-2019 that explored the impact and/or implementation of electronic consultations in primary care. Database searches were supplemented by reference list and grey literature searches. Data were analyzed using inductive thematic analysis and synthesized using Normalization Process Theory (NPT). Results In total, 227 articles were initially identified and 13 were included in this review. The main factors found to hinder implementation included awareness and expectations; low levels of engagement; perceived suitability for all patient groups, conditions, and demographics; cost; and other contextual factors. Reports of information technology reliability and clinical workload duplication (as opposed to reduction) also appeared detrimental. Conversely, the development of protocols and guidance; patient and staff education; strategic marketing; and patient and public involvement were all identified as beneficial in facilitating electronic consultation implementation. Conclusions This review highlights the need for proactive engagement with patients and staff to facilitate understanding and awareness, process optimization, and delivery of coherent training and education that maximizes impact and success. Although the necessity to use online methods during the COVID-19 pandemic may have accelerated awareness, concerns over workload duplication and inequality of access may remain. Future research should explore health inequalities in electronic consultations and their economic impacts from multiple perspectives (eg, patient, professional, and commissioner) to determine their potential value. Further work to identify the role of meaningful patient involvement in digital innovation, implementation, and evaluation is also required following the rapid digitization of health and social care.

scholarly journals PARE0007 PATIENT AND PUBLIC INVOLVEMENT IN CLINICAL TRIAL DESIGN

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1289.1-1290
Author(s):  
S. De Souza ◽  
R. Williams ◽  
E. Johansson ◽  
C. Zabalan ◽  
T. Esterine ◽  
...  
Keyword(s):  
At Risk ◽  
Lived Experience ◽  
Public Involvement ◽  
Clinical Trial Design ◽  
Patient And Public Involvement ◽  
Face To Face ◽  
Before And After ◽  
Extensive Consultation ◽  
New Perspective ◽  
The Eu

Background:Patient and public involvement (PPI) is gaining increasing recognition as important in ensuring research is relevant and acceptable to participants. Rheuma Tolerance for Cure (RTCure) is a 5 year international collaboration between academia and industry; focusing on earlier detection and prevention of rheumatoid arthritis (RA) through the use of immune-tolerising treatments.Objectives:To bring lived experience and insight into scientific discussions; and to evolve collaboration between lay representatives and academia/industry.Methods:9 Patient Research Partners (PRPs) from 5 European countries were recruited via the EULAR PARE Network and institutions within the RTCure Consortium (8 PRPs with RA and 1 ‘at risk’). They were asked to enter into a legal agreement with the Consortium. PRPs participated in teleconferences (TCs) and were invited to attend face-to-face (F2F) meetings at least annually. Requests for input/feedback were sent from researchers to PRPs via the project’s Patient Engagement Expert [SK].Results:PRP involvement has given researchers and industry partners a new perspective on patient priorities, and focused thought on the ethics of recruitment for and participation in clinical trials of people ‘at risk’ of developing RA. PRPs have helped define the target populations, given their thoughts on what types of treatments are acceptable to people ‘at risk’ and have aided the development of a survey (sent to EULAR PARE members) regarding the use of animal models in biomedical research. Positive informal feedback has been received from researchers and industry regarding the contribution of PRPs to the ongoing project (formal evaluation of PPI in RTCure will be carried out in 2020 and at the project end in 2022).Challenges:Legal agreements- Many PRPs refused to sign the Consortium’s complex PRP Agreement; feeling it unnecessary, incomprehensible and inequitable. After extensive consultation with various parties (including EULAR and the Innovative Medicines Initiative) no similar contract was found. Views for its requirement even varied between legal experts. After 2 years of intense discussion, a simple non-disclosure agreement was agreed upon. Ideally any contract, if required, should be approved prior to project onset.Meeting logistics- Other improvements identified were to locate the meeting venue and accommodation on the same site to minimise travel, and to make it easier for PRPs to take breaks when required. This also facilitates informal discussions and patient inclusivity. We now have agreed a policy to fund PRPs extra nights before and after meetings, and to bring a carer if needed.Enabling understanding– Future annual meetings will start with a F2F meeting between PRPs and Work Package Leads. Researchers will be encouraged to start presentations with a summary slide in lay language. Additionally, an RTCure Glossary is in development.Enabling participation– SK will provide monthly project updates and PRP TCs will be held in the evening (as some PRPs remain employed). PRPs will be invited to all project TCs and F2F meetings. Recruitment is underway to increase the number of ‘at risk’ PRPs as their viewpoint is vital to this study.Conclusion:Currently PPI in RTCure is an ongoing mutual learning process. Universal guidance regarding what types of contracts are needed for PPI would be useful. Communication, trust and fruitful discussions have evolved through F2F meetings (both formal and informal) between PRPs, academia and industry. It is important that all parties can be open with each other in order to make PPI more meaningful.Acknowledgments:This work has received support from the EU/EFPIA Innovative Medicines Initiative 2 Joint Undertaking RTCure grant number 777357.Disclosure of Interests:Savia de Souza: None declared, Ruth Williams: None declared, Eva Johansson: None declared, Codruta Zabalan: None declared, Tom Esterine: None declared, Margôt Bakkers: None declared, Wolfgang Roth: None declared, Neil Mc Carthy: None declared, Meryll Blake: None declared, Susanne Karlfeldt: None declared, Martina Johannesson: None declared, Karim Raza Grant/research support from: KR has received research funding from AbbVie and Pfizer, Consultant of: KR has received honoraria and/or consultancy fees from AbbVie, Sanofi, Lilly, Bristol-Myers Squibb, UCB, Pfizer, Janssen and Roche Chugai, Speakers bureau: KR has received honoraria and/or consultancy fees from AbbVie, Sanofi, Lilly, Bristol-Myers Squibb, UCB, Pfizer, Janssen and Roche Chugai

scholarly journals Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Femke van Schelven ◽  
Eline van der Meulen ◽  
Noortje Kroeze ◽  
Marjolijn Ketelaar ◽  
Hennie Boeije
Keyword(s):  
Young People ◽  
Chronic Condition ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
English Summary ◽  
Lessons Learned ◽  
Project Teams ◽  
Data Sources ◽  
Future Prospects ◽  
Roles And Responsibilities

Plain English summary Background Young people with a chronic condition are increasingly involved in doing research and developing tools and interventions that concern them. Working together with patients is called Patient and Public Involvement (PPI). We know from the literature that PPI with young people with a chronic condition can be challenging. Therefore, it is important that everyone shares their lessons learned from doing PPI. Aim We want to share our lessons learned from a large program, called Care and Future Prospects. This program helps young people with a chronic condition to, for example, go to school or to find a job. It funded numerous projects that could contribute to this. In all projects, project teams collaborated with young people with a chronic condition. What did we do We asked young people with a chronic condition and project teams about their experiences with PPI. Project teams wrote reports, were interviewed, and filled out a tool called the Involvement Matrix. Young people filled out a questionnaire. Findings In the article, we present our lessons learned. Examples are: it is important to involve young people with a chronic condition from the start of a project and everyone involved in a project should continuously discuss their responsibilities. We provide practical tips on how young people with a chronic condition and project teams can do this. A tip for young people is, for example: ‘discuss with the project team what you can and want to do and what you need’. An example of a tip for project teams is: ‘Take time to listen attentively to the ideas of young people’. Abstract Background The Patient and Public Involvement (PPI) of young people with a chronic condition receives increasing attention in policy and practice. This is, however, not without its challenges. Consequently, calls have been made to share lessons learned during PPI practice. Methods We share our lessons learned from a large participatory program, called Care and Future Prospects. This program aims to improve the social position of young people aged 0–25 with a physical or mental chronic condition by funding participatory projects. We have drawn our lessons from 33 of these projects, using four data sources. One data source provided information from the perspective of young people with a chronic condition, i.e. questionnaires. Three data sources contained information from the perspectives of project teams, i.e. project reports, case studies of projects and Involvement Matrices. For most of the projects, we have information from multiple data sources. Results We have combined the findings derived from all four data sources. This resulted in multiple lessons learned about PPI with young people with a chronic condition. Those lessons are divided into six themes, including practicalities to take into account at the start, involvement from the start, roles and responsibilities, support, flexibility and an open mind, and evaluation of process and outcomes. Conclusions The lessons learned have taught us that meaningful PPI requires effort, time and resources from both young people and project teams, from the beginning to the end. It is important to continuously discuss roles and responsibilities, and whether these still meet everyone’s needs and wishes. Our study adds to previous research by providing practical examples of encountered challenges and how to deal with them. Moreover, the practical tips can be a valuable aid by showing young people and project teams what concrete actions can support a successful PPI process.

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