Since we launched www.patientsactiveinresearch.org.uk almost two years ago, it’s been good to see a steady stream of researchers posting their patient and public involvement (PPI) opportunities there, and a growing number of patients and members of the public signing up to get involved. The latest monthly stats show 441 users visited the site in November, with a good split between new users (almost 60%) and those returning.
As we explained when we launched, our original aim was for the site to offer only true PPI opportunities – so, not requests for patients to join studies as participants – but we increasingly realised that this purist aim might let down people who came across the site without a clear idea of what they might do, but keen to help with research in whatever way they could.
We know from chatting to patients that they like the resource and find it useful, and indeed that the Friday round-up of opportunities is something they are glad to see ping into their in-box. We recently asked researchers to tell us how using the site was for them, and I’d like to thank our first three respondents – for finding the site useful, and for telling us that they did:
“In August 2016 we posted an opportunity on www.patientsactiveinresearch.org.uk for people to get involved with the Quality in Organ Donation (QUOD) programme based at the Oxford Transplant Centre in the Churchill Hospital. We had much interest and now have 6 members of the public who will bring their perspective to reviewing proposals from researchers to use QUOD samples, two of whom will also sit on the Steering Committee. They will help to keep users and carers at the centre of service delivery and development. Without this site and the other resources available from the BRC Patient Involvement Working Group we would have struggled to find a way to get people involved.”
Sandrine Rendel, QUOD National Co-ordinator, Nuffield Department of Surgical Sciences
“Following the success of the Patients Active In Research (PAIR) group in guiding a Patient and Public Involvement (PPI) strategy across the National Institute for Health Research (NIHR) Oxford Biomedical Research Centre (BRC) and Unit (BRU), mental health (MH) research teams in Oxford started to think about how they too could develop a clear strategy for working with patients as partners in research. In June 2016 the University of Oxford, Department of Psychiatry and Oxford Health NHS Foundation Trust lead the recruitment of patients, carers, members of the public as well as researchers and clinicians across Oxfordshire and Buckinghamshire to the Patients and Research group (PAR). PAR will help to develop and deliver a strategy for PPI in MH Research. The introductory meeting of PAR will be held on the 1st of December and www.patientsactiveinresearch.org.uk played a key part in making this a reality as five of the patient and public members to attend this were connected with the group via the website.”
Kaelene Mistretta, Patients and Research (PAR) group co-ordinator, Department of Psychiatry
“In February 2016 I was developing a project to help to understand the lifecourse costs and quality of life of people living with osteoarthritis of the hips and/or knees. I was looking for (a) dialogue with, and guidance from, people with lived experience to inform the study design (including how patient and public involvement could be incorporated throughout), and (b) people who might be interested in advising the project should funding be granted. I advertised on www.patientsactiveinresearch.org.uk and, as a result, engaged in dialogue with 3 people who provided ideas that expanded the original scope, helped to clarify the language of the project summary to make it more accessible to lay readers, and helped me to further understand the relevance of this study from their perspectives..
Rafael Pinedo-Villanueva, Senior Research Associate in Health Economics, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences
Stop press: Big congratulations to Theatre of Debate, with whom we worked on People are Messy, the highly acclaimed play about PPI. They have just been awarded the National Co-ordinating Centre for Public Engagement 2016 prize for Engaging with Young People for the project they moved on to after their work with us. Together with the University of Leeds and Batley Girls High School, their COHESION Pilot brought together students from Performance Arts and Dentistry faculties with local school pupils to co-develop a play and debate about oral health, encouraging people to care for their teeth in a region where 12 year olds have the second worst dental health in the UK.