**Patient and Public Involvement Workshop** Contributors: Ben Hood (Newcastle), Ruth Boyd (Belfast), Glenda Laviste (Manchester) and Vivienne Wilson (Edinburgh) The Patient and Public Involvement (PPI) Workshop highlights how Covid-19 has affected PPI involvement in cancer research, and includes talks from senior research nurses, PPI leads, PPI representatives and a clinical trial patient. The workshop was divided into three sections: - PPI group adaptations to Covid-19 challenges, demonstrated by PPI project case study in Newcastle which pilots an electronic consent process - Personal challenges faced by PPI representatives and clinical trial patients during Covid-19 - An expert panel audience question and answer session. **Part 1: PPI group adaptations to Covid-19 challenges** Ben Hood is a Senior Cancer Research UK Nurse and describes the adaptations made by the Newcastle ECMC Perspectives in Cancer Research group. - Meetings have moved from face to face to virtual meetings via Zoom; duration has reduced but frequency has increased; the number of members has reduced, partly due to issues with using the online platform; and there has been an increase in the number of projects reviewed. ![enter image description here][1] - Benefits of these changes have included access to more educational talks from healthcare professionals and links with other PPI groups in the North East, both made possible through the virtual platform. **Electronic Consent Project** An electronic consent project has been established to reduce non-essential patient time in hospital within cancer research support. The project utilised technology to integrate electronic consent within studies which did not require blood sample collection at this point of the process, such as the Medallion pilot study and additionally looked at the potential of integrating the system within the national SMP2 cancer research study. - Existing patient pathways were mapped out and a new patient pathway developed using electronic documents and technology such as PDF documents, email, Zoom and electronic signature software. - Adaptation to electronic consent were reviewed a Research Ethics Committee, the sponsor of the study, NHS research governance and was deemed within HRA guidelines. - The project was PPI driven, designed by patients for future patients. Input was sought via a Twitter poll and from patients on clinical trials, with a positive response from both. Trials were conducted with PPI representatives and the consent process was developed over a two-month period. - Following an initial discussion with the doctor regarding participation in the research study the consent process was conducted with the patient over Zoom. The consent form (including the PIS) was signed using Adobe Sign software and witnessed via screen share. Disadvantages identified during the electronic consent included difficulty using an online platform and the need for access to a reliable internet connection, which meant back up plans were required for technical issues. Another concern was that some patients were not as comfortable with virtual communication as with face to face contact, so in these cases this method did not provide the same level of support and opportunities to discuss anxieties. Advantages included the reduction of non-essential patient visits; it was supportive of social distancing; the paperless process is environmentally friendly and efficient; and the process is inclusive of relatives, who are geographically distant, taking part in the consent process and asking questions. **Part 2: Personal challenges faced by PPI representatives and clinical trial patients during Covid-19** Margaret Grayson, a breast cancer patient, and Chair of the Northern Ireland Cancer Research Forum described her experience of being a PPI representative during Covid-19. Prior to Covid-19 around 30 members met 4 times a year with researchers to provide patient perspective and feedback, with additional subgroup and advisory group meetings outside of the core meeting. **Key challenges:** - Face to face meetings and public research events were cancelled so it was not possible to recruit new members and existing members were unable to meet with researchers. - The volume of research coming through from universities reduced, and as did the availability of researchers as they were redirected towards Covid-19 research. - There has been a substantial increase in survey response requests for Covid-19 and cancer related surveys. - Online platforms have not been accessible to everyone due to a lack of technology and access issues, and a lack of knowledge and experience of using these services. There has been a steep learning curve in the etiquette and management of online meetings. - On a personal level, treatments have been influenced and patients are worried about the cancellation of appointments, but they are also concerned about the safety of hospital visits due to Covid-19. - Meetings have become more formal and the important social and supportive aspects of meetings have reduced, especially the opportunity to interact informally with the researchers. - There has been a large variation in the level of workload for different members, depending on whether the cancer research projects continued and how involved in Covid-19 related research members have been. Whilst travel requirements have reduced, for some members the workload has become challenging and fatiguing. **Key messages:** - PPI representatives want researchers to know they are still available for requests for participation and would like the opportunity to decide what they are able to accommodate. - Researchers could use this time to take the opportunity to talk to PPI representatives informally and find out what they are experiencing. - All PPI representatives are different, and have different support, technology and communication requirements which need to be shared and recognised. - PPI representatives are passionate about their work and need to avoid becoming overloaded, through practising self-care and protecting themselves. Recommended reading: [Beating Burnout: Self-Care Strategies for Patient Advocates][2] Marilyn Bell, a cancer research clinical trial patient who has continued her trial during Covid-19 also shared her experiences and some of the positive aspects of the changes. **Key messages:** - A reduction in travel time has been beneficial with regards to time commitment and fatigue. - The experience of adjusting to cancer prior to Covid-19 (with regards to the reduction of activity, a level of isolation and the impact on lifestyle) provided some level of preparation in adjusting to Covid-19. - Support is a vital part of the process. The continuation of one monthly (rather than fortnightly) face to face visits has ensured a continuation of the high level of NHS support gained from meeting with the consultant, the research nurses, and the clinical trial board. The support gained from meeting people in similar situations has remained invaluable. - Isolating and missing the social aspects is difficult, as is not being able to have family and friends attend visits. But their support is still there and remaining positive is important. **Part 3: Expert panel discussion** This section provided the chance for the panel to respond to audience questions and summarised the main points of the workshop. **Key messages** - Meetings have become shorter, more focused, and less restricted by travel and treatment constraints; whilst the objectives have remained the same and patients’ interests remain at the heart of the process. - Self-care is important. PPI representatives need to avoid becoming overwhelmed and be able to make changes and say no when necessary. This allows them to continue to be an effective PPI representative and to be strong for themselves. - Informal social interaction is valuable and can be lost through virtual communication. It is important for practitioners and researchers to learn how to use technology and continue to be able to communicate effectively in this way with PPI groups. Training focused on this is taking place in Manchester. - Cancer research during Covid-19 has been stressful and challenging at times but the NHS teams have coped amazingly and have done a fantastic job. They have continued to recruit and consent; look after patients on studies through social distancing and safety measures; and ensure that patients feel safe and reassured. - The patient voice is vital and needs to be protected moving forward, along with cancer services and cancer research. [1]: https://mfr.de-1.osf.io/export?url=https://osf.io/dyvsw/?direct%26mode=render%26action=download%26public_file=False&initialWidth=692&childId=mfrIframe&parentTitle=OSF+%7C+PPI+group+adaptations+to+Covid-19.jpg&parentUrl=https://osf.io/dyvsw/&format=2400x2400.jpeg [2]: https://powerfulpatients.org/2019/08/23/beating-burnout-self-care-strategies-for-patient-advocates/