The next phase of the successful Patient & Public Engagement programme will launch in 2020.  Having built a strong network reach of over 14,000 patients and deepened their knowledge of rheumatic disease and some of the research around it, BIRD is now focusing on getting more patient volunteers involved in research itself.

PPE programme director, Mel Brooke said: “BIRD is helping everyone to work together to improve research – patients, clinicians, researchers, the hospital and the university – and therefore to improve the lives of patients”.

The PPE Programme was started in 2016 with an evolutionary approach, testing what worked well and developing what patients really wanted.  People tell us what great value there is in hearing from experts and in talking to others who understand what they are going through and this led to us setting up opportunities for patients, families, friends and carers to connect, learn and share.

The PPE initiative has also been working closely with patients to get them involved in research and help to deepen their understanding of their rheumatic disease, the latest research and treatments available.  We have access to a network of RNHRD professionals, University of Bath researchers and academics, including our consultant trustees and share opportunities to get involved with research via our e-newsletter, website, Twitter and Facebook pages.  We circulate surveys from researchers and co-host workshops and focus groups.  Our Patient and Public Engagement Programme Director is able to coach and encourage patients to give their opinion and describe and expand on their lived experience to researchers.

In 2019 the programme was evaluated independently and this led to Phase Two development for the next two years 2020 and 2021 that:

• Recognises the strength of our information days – BIRD now commits to 7 per year – and the importance of an engagement professional who is also a patient leading and shaping the programme
• Adapts how we give out information to increase the diversity of patients reached, especially those in work or time poor.
• Sets a new focus on getting patients involved in research reflecting BIRD’s role as a medical research institute – in 2019, 33 patients were involved in research but, following evaluation of our programme we now aim to dramatically increase that number to 90 per year
• Adjusts the way BIRD awards research grants to ensure that every project engages with patients
• Sets more focussed objectives around patient outcomes, specifically by the end of 2021:
  • Patients have a deeper knowledge of rheumatic diseases, with 900 patient attendees at 7 patient events and piloting webinars for 1000 patient views online. 85% describing their knowledge as improved or really improved since attending.  Patients reached reflect the general population in terms of age, gender, socio-economic group and ethnic background.
  • Patients are involved in research, with 170 patients participating in focus groups, surveys, apps and workshops
  • Patients give high quality input to research as patients develop confidence and understand researchers’ needs. BIRD will identify and understand researchers’ needs, arrange training and development for patients, and explore the setting up of an expert patient peer group so that 75% of patients are confident and satisfied they expressed their thoughts and needs and 85% of researchers find their input use.

The latest PPE programme of information days and research opportunities can be found here.