Greg Booth, senior pain management and rehabilitation physiotherapist & senior research therapist and PPA member shares his experience and findings from involving patients and the public in aspects of his research.
Involving patients and the public in research and healthcare improvement can make a real difference and can be highly influential for the success of such projects. The National Institute for Health Research (NIHR) defines patient and public involvement (PPI) in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”
My research focuses on physical activity (PA) in people with persistent musculoskeletal pain.
The WHO defines PA as “any bodily movement produced by skeletal muscles that requires energy expenditure. Physical activity refers to all movement including during leisure time, for transport to get to and from places, or as part of a person’s work.”
From October 2019 to November 2020, I was a HEE/NIHR Pre-doctoral Clinical Academic Fellow (PCAF), and in June 2020 I sought the insight of people with persistent musculoskeletal pain about this research topic and about future research in this area. Participants were recruited from the musculoskeletal outpatient department and the persistent pain management programmes at a tertiary orthopaedic hospital. This is the first stage of my research and the outcome of these discussion groups has informed a large research funding application.
I facilitated two PPI discussion groups in June 2020; one consisting of 4 participants and one consisting of 3. Six of the participants were female, ages ranged from early-30s to mid-70s. The majority’s primary pain location was their lower back and the other was their knees. Half of the participants had pain in multiple areas. Due to the COVID-19 social distancing measures, these discussion groups were held over Zoom and lasted approximately 75 minutes each.
There were four topics discussed and the main points from each topic are summarised below:
1. Is physical activity important to you and why/why not?
All participants stated that PA was important to them and highlighted physical, psychological, and general health benefits. Initial increases in PA led to physical benefits that included improved pain and movement and increased physical function which has led to them being able to do activities they had not been able to do for a while. Being consistent with their PA levels leads to preservation in their physical capabilities. PA often leads to more positive moods, higher confidence, better focus, and a sense of achievement. It can also help to reinforce positive beliefs about persistent pain and PA. General health benefits include weight loss and weight maintenance. They emphasised the importance of consistency, ideally being active in some form every day, with consideration of balancing activities to ensure appropriate pacing.
2. What do people with persistent MSK pain need to be more physically active and sustain it? (e.g. skills, knowledge)
Participants highlighted they needed regular check-ins and long-term access to healthcare professionals (HCPs) to provide encouragement, reassurance, and accountability; all contributing to their motivation. However, they also acknowledged that they would benefit from finding this within themselves.
Individual factors including goals, resilience, pacing and prioritising skills, and the ability to be flexible with their PA in response to current pain levels were highlighted as important in maintaining their PA. They also acknowledged that having their goals approved by others, people to do PA with and peer support were essential. With specific reference to PA, having variety, keeping it fun and having access to equipment and online resources (e.g. apps or websites) were also helpful.
3. What do clinicians need to do to facilitate sustained change in physical activity?
The participants explained that their care needed to be holistic and the clinicians require good listening and communication skills, needed to be honest and needed to be flexible with their interventions.
During the clinical encounter participants wanted advice about PA and health promotion instead of “scare mongering”. They want clinicians to teach them skills that enable them to sustain their PA long-term and that are relevant to them. Participants reported long-term support would be beneficial for accountability, reassurance, and updates on new developments in the field.
4. Future research ideas/priorities
Several themes arose regarding future research priorities:
- Sustainability/maintenance of behaviour change and habit formation; asking the question of what are the challenges with these and how can health professionals and people with persistent pain overcome them?
- The impact of using peer role models (e.g. others with persistent pain) to facilitate behaviour change.
- Supporting clinician skill development in supporting behaviour change.
- Systems to provide long-term support – what could these look like and what would work for patients and clinicians?
- Impact of social connection in supporting behaviour change and maintenance.
- The patient-therapist partnership and its impact on supporting behaviour change.
Involving patients and the public in research and healthcare improvement can be highly beneficial as they provide unique insight based on lived experience. This PPI activity gained thoughts around the importance of PA to people with persistent MSK pain and their requirements to sustain it. They shared broad thoughts on what clinicians can do to facilitate PA. Lastly, they brainstormed ideas about future research and provided suggestions on what might advance patient care.
The information gained has been used to inform a funding application for research that will be beneficial to people with persistent MSK pain by enhancing their engagement with PA.
I highly encourage all physios to involve patients or people with lived experience from the start of their research, service development or quality improvement projects.
I would like to thank the London NIHR Research Design Service for providing the training courses I attended prior to running these discussion groups, and for awarding me funding via their Enabling Involvement Fund. Lastly, I would like to thank the participants who gave up their time and showed such enthusiasm during the discussions.
Senior pain management and rehabilitation physiotherapist & senior research therapist,
Therapies Department, Royal National Orthopaedic Hospital NHS Trust
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