scholarly journals P074 Insights into creating a virtual patient and public involvement initiative

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Eleanor Hawkins ◽  
Tracy Hyndman ◽  
Raj Amarnani ◽  
James Kimpton ◽  
Su-Ann Yeoh ◽  
...  
Keyword(s):  
Biomedical Research ◽  
Health Research ◽  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Centre ◽  
Face To Face ◽  
London Hospital ◽  
University College ◽  
University College London

Abstract Background/Aims  Patient and public involvement (PPI) initiatives are important to ensure patient-centered research. However, traditional focus groups can present challenges including the recruitment and retention of patient partners. Additional challenges to patient involvement have also arisen due to the coronavirus pandemic (COVID-19). The University College London (UCL) Patient Partners in Rheumatology Research initiative has been developed to explore novel ways to boost patient involvement and foster an active collaboration between basic researchers and patient partners. Methods  Two online surveys were designed to obtain information with regards to the expectations and practicalities of this initiative. One survey was sent to patients who had registered an interest in being patient partners and the other survey to rheumatology researchers at UCL and University College London Hospital (UCLH). Results  We received responses from 25 researchers and 21 patients. The majority of patients who responded (71%) had not previously been involved in PPI. Most of the researchers (84%) had previously utilised PPI, however 20% of those had some difficulty accessing it. Most patients (86%) were interested in becoming a patient partner. Amongst those with reservations, one stated that “I don't think I have the qualifications to be involved with scientists and researchers”. Over half of patients (52%) were happy to participate in PPI more than five times a year and most researchers (84%) expressed that five times a year was acceptable. Patients favoured (52%) conducting PPI meetings after office hours (5-8pm) during the working week. Due to social restrictions because of COVID-19, we asked both patients and researchers their preferred mode of meeting. Both groups favoured a mixed (virtual and face to face) meeting arrangement (81% for patients and 68% for researchers). A third of patients (38%) expressed that they would need technical assistance accessing a virtual meeting. Almost all patients (95%) were happy to contribute to lay summary reviews remotely via email. Conclusion  Based on the insights gained from the survey results, our PPI initiative meetings will be hosted in a hybrid virtual/face to face format. These will be held at a time and frequency that is convenient for the patient partners to increase participation across wider demographics. This survey has highlighted that we have to be mindful of certain patient perceptions of PPI which creates a barrier to patient involvement and that some individuals may require further support in accessing virtual meetings. By designing a PPI initiative that creatively addressed the needs of both the researchers and patient partners we hope to create a platform for productive dialogue and collaboration to ensure patient-centred research, despite the changes brought about by the COVID-19 pandemic. Disclosure  E. Hawkins: Other; funded by National Institute of Health Research, Clinical Research Network. T. Hyndman: None. R. Amarnani: None. J. Kimpton: None. S. Yeoh: Other; University College London Hospital National Institute of Health Research Biomedical Research Centre, UCLH Charities, Royal College of Physicians and Rosetrees Trust. M. Castelino: Other; University College London Hospitals National Institute for Health Research Biomedical Research Centre.

scholarly journals Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e047995
Author(s):  
Rosamund Yu ◽  
Bec Hanley ◽  
Simon Denegri ◽  
Jaber Ahmed ◽  
Nicholas J McNally
Keyword(s):  
Biomedical Research ◽  
Public Involvement ◽  
Good Practice ◽  
Training Programme ◽  
Patient And Public Involvement ◽  
Research Centre ◽  
Major Research ◽  
The Public ◽  
The Uk ◽  
The Impact

ObjectivesTo design, deliver and evaluate a programme of training workshops for biomedical researchers aimed at building confidence and skills in actively involving patients and the public (PPI) in research.DesignA bespoke programme of training workshops in PPI aimed at researchers.SettingA large National Institute for Health Research Biomedical Research Centre in London and several partner organisations.Participants721 scientists, clinicians and research managers attending dedicated training in PPI at a major London NHS (National Health Service)–university partnership.InterventionsA programme of 72 training workshops, designed to build practical skills and confidence for researchers working with patients and the public in research, was delivered at a major research-active NHS:university partnership. An iterative approach was taken to the programme, with the content of the workshops continually reviewed and refreshed to respond to the needs of researchers. Surveys before, immediately following and 6 months after training investigated the impact on researchers’ confidence and skills in PPI work, and the kind of PPI they subsequently carried out.ResultsTraining brought about immediate marked increases in researchers’ self-reported confidence to carry out PPI activities within their research, and in their knowledge of good practice. The evaluation indicates that workshop attendees were more likely to involve patients in their research following training. Researchers tended to involve patients and the public in a range of areas, including input to study design and patient information, in particular.ConclusionsWhen positioned within a broader organisational strategy for PPI in research, such training has an important role to play in progressing PPI in a major research partnership. Training appeared to provide the confidence needed to carry out PPI which enabled further development of confidence and skills. Involving researchers who have attended the training in the ongoing development of the programme and bringing in patients to the training programme are key next steps.

scholarly journals Innovating public engagement and patient involvement through strategic collaboration and practice

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Leah Holmes ◽  
Katharine Cresswell ◽  
Susannah Williams ◽  
Suzanne Parsons ◽  
Annie Keane ◽  
...  
Keyword(s):  
Professional Practice ◽  
Public Engagement ◽  
Health Research ◽  
Patient Involvement ◽  
Economies Of Scale ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Activity ◽  
North West ◽  
The Impact

Abstract Background Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually defined as raising awareness of research) and patient involvement (usually defined as actively involving people in research) have traditionally been seen as separate but have much to gain from working together towards a common goal of better health outcomes for all. Methods This paper describes a unique approach taken by the Public Programmes Team: a small interdisciplinary team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, embedded within translational research infrastructure and delivery in Manchester in the North West of England. We propose a new model of professional practice – a 'cycle' of engagement and involvement – innovating across the complementary fields of public engagement and patient involvement, and working inclusively and in partnership with people in health research. Further, our approach capitalises on strategic collaboration offering economies of scale and a joined up way of working. Our ambition is to boldly experiment, learn and reflect, responsibly and based on evidence and partnerships, using methods of engagement that address issues of social justice. Results Here, we report on preliminary case studies exemplifying the impact of our approach, and data relating to achievements and learning between April 2017 and March 2018. Informed by our findings, we propose that our approach has the potential to be replicated elsewhere. Conclusions Our practice and the beginning of its evaluation lead us to believe that our way of working and model of professional practice – the ‘cycle’ of engagement and involvement – is effective in: addressing our vision of making health research relevant and inclusive for everyone; and embedding and joining up public involvement in a busy and fertile translational health research ecosystem.

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 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.

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