Working with patients to reimagine pain management
Susannah from Vocal talks to researcher Janet Deane about the difference patients made to her research
Janet Deane from the University of Manchester is one of the many researchers collaborating with Vocal to involve people in having a say in their research. In this interview, she talks about her work and how people from the Musculoskeletal Research User Network helped to shape her research.
Can you tell us a little bit about yourself and your research?
My research focuses on new approaches to rehabilitation for patients with chronic musculoskeletal pain. I’m currently developing a digital app to help people with chronic spinal pain to self-manage their exercise.
How did the pandemic change your approach to involving patients?
I started my research in September 2020, which was a challenge. Vocal helped me to involve a diverse and representative group of patients from the MSK Research User Network. The patients attending the online meeting had read my draft research protocol and gave me honest and detailed feedback in advance. The feedback before the session was very useful.
What did the patients think of your proposal?
Overall, the group was excited by the proposed research. People felt that the same exercise advice, such as ‘don’t overdo it’ or ‘exercise more’, does not apply to everyone; ‘everyone is not the same’. Also they outlined the barriers they face to doing exercise which included accessiblity, safety and cost.
It was really useful to learn from the group that they were interested in understanding the science behind new digital exercise interventions. It was also evident that patients felt empowered by the potential to personalise exercise through the feedback technology in the app.
It's easy to have tunnel vision when you’re designing a study. However, this experience challenged me to think of alternative solutions, highlighting the importance of co-design and encouraging our future work with a representative and diverse steering panel of patients.
What impact did the patients have on your research plans?
The group inspired our team to come up with new ways of visualising and interpreting exercise data. In the same way that no single exercise plan will suit all patients, people also wanted different types of exercise feedback.
Some people in the group didn’t speak English as their first language and there were also people who found digital data intimidating, their views helped us to reimagine the exercise feedback in a more patient-centred way. Their suggestions about alternative imagery have informed our first app prototype.
I’m building on the feedback and ideas from patients to create the first digital app prototype for patients with chronic spinal pain in collaboration with a multi-disciplinary team of clinicians and researchers at the University of Manchester and University of Birmingham. I’m looking forward to sharing the prototype with the group next month.
See more information about Janet and her research here.