Patient and Public Involvement and Engagement within a UK blood cancer cohort: a case study

This paper presents a case study of Patient and Public Involvement (PPI), in which people shared their ‘lived experience’ as ‘experts’ who manage their blood cancer on a daily basis, within their own environment and social circumstances. The case study is set within an ongoing cohort study that was established in 2004 in the North of England, and currently includes ~ 55,000 newly diagnosed patients (no exclusions), increasing annually by ~ 2,500. Participants are invited to join a Patient Partnership, and if they agree may be asked to take part in PPI. PPI is conducted with selected patients, matched to the research question. It takes place during one-to-one or group consultations (interviews or focus groups), which may occur face-to-face or online, and during the daytime or evening, on a weekday or weekend, to provide various options and promote inclusivity. PPI meetings have generated advice on research priorities, website design and content, and study design and implementation; with more formal collaborations established within funding applications, and Oversight Committee and Sub-Committees. Researchers received practical assistance in preparing clear study paperwork written in plain language, for information leaflets and consent forms, academic papers, and summaries used to share findings on lay-websites and social media sites. Letters of support have also been provided for funding applications. PPI has underpinned the cohort’s ethical and governance approvals; and improved its methods, and the way in which findings are shared. Open Days and other meetings with patients and the public have raised awareness about the cohort and engaged people in the research process. People said they were pleased to take part in PPI and to have the opportunity to give something back. Factors for success were the inclusion of appropriate stakeholders, sufficient reimbursement, feedback on impact, skilled facilitators, and good governance. PPI activities will be strengthened within the cohort over coming years, by significant expansion in members of the Oversight Committee and Sub-Committees, from across the study area, and with an increased focus on underserved communities. Effective PPI requires sufficient time, skills, effort and resources; and it is important to be aware of changes in this rapidly developing area. Patient and Public Involvement (PPI) is when people (e.g., patients, potential patients, caregivers) work with researchers to improve clinical knowledge and NHS healthcare. This paper presents a case study showing how PPI was set up to improve the lives of people affected by blood cancer in an ongoing study, started in the North of England in 2004. The study now includes 55,000 blood cancer patients, all of who have data collected from their medical records. They are also invited to join a Patient Partnership, and those who agree may be asked to take part in PPI. PPI has involved people affected by blood cancer sharing their views as ‘experts’ with ‘lived experience’. These voices have helped decide what studies to carry out and how best to do them. This makes sure the cohort’s work is important, easy to take part in and able to improve NHS care. PPI is carried out in one-to-one or group meetings that may be face-to-face or online, to give people have different options. Patients and the public help researchers prepare study paperwork and websites; join funding applications and committees, and give advice. People affected by blood cancer have worked with the research team to write up findings in plain words, for sharing with the public on website and social media sites; and they have taken part in our Open Days and other meetings. This raises awareness about the study and helps people get involved in research. Time, skills and funding are needed for good PPI.