Community Pot Project 2019/20: Bath Institute for Rheumatic Diseases
We are thrilled that we can now look forward to developing Podcasts as a new way forward for inviting questions from patients and their families, interviewing a range of experts, and promoting them to a wider range of people.
Bath Institute for Rheumatic Diseases (BIRD) exists to support arthritis research, education and patient engagement.
BIRD strives to put patients at the centre of their work, recognising and encouraging the importance of their voice in research and the development of treatment and options open to them.
They encourage and fund research projects between the University of Bath and the Royal United Hospitals Bath. They educated healthcare professionals in aspects of rheumatic disease and they engage with a large number of patients to both deepen their understanding and to encourage them to get involved in research.
Aim of the project
Developing podcasts of content used at patient information days to reach a wider audience of those unable to physically attend, evolved in consultation with the excluded.
BIRD's Patient & Public Engagement (PPE) initiative works closely with patients to get them involved in research, deepen their understanding of their rheumatic disease and the latest research and treatment available.
People have told them that they value hearing from experts and in talking to others who understand what they are going through. This led to BIRD to setting up opportunities for patients and their carers to connect, learn and share.
In total their patient network reach now exceeds 14,000 patients and members of the public. Phase one of this initiative, patient information days and engagement in workshops and focus groups, was completed in late 2019 and an evaluation undertaken. One of the main points to come out of this evaluation was an inequality in attendance. Some patients wished that they could attend but due to health, work, personal circumstances (i.e. being a carer or having young family) and distance issues they could not. They all requested an option to attend online or view the information online.
COVID19 has only served to highlight the importance of a digital attendance option. They conducted one small podcast experiment with early results very encouraging.
As a result of this BIRD will:
- plan and organise podcast *mini-series for 4 separate rheumatic diseases, agree content, secure speakers for each condition and organise recording sessions,
- host and produce 4 themed podcast mini-series between April and December 2020 explaining each illness, medications and treatment options,
- load these podcasts online by end of December 2020,
- promote and raise awareness with their patient network as to where to find the information, through NHS contacts, contact details for patients, illness specific charities e.g. ROS amongst others, and
- gather feedback from all involved to continually update and make the next one better. Feedback will be via an online survey that people are asked to complete after listening to the podcasts.
*A ‘mini-series’ is 2-3 podcasts relating to one main theme within either Osteoporosis, Vasculitis, Axial Spondylitis or Psoriatic Arthritis.
Podcast Mini-Series
The first of the podcast mini-series on Osteoporosis has been recorded and is now available to listen to.
Talk to us
What are your experiences of using services in BANES? You can speak to one of the team or provide feedback online. Giving feedback, both good and bad, can help improve services. #BecauseWeAllCare
