Tell us about your project
We want to develop a fuller picture of musculoskeletal health, risk, and care across North Staffordshire & Stoke-on-Trent to provide more useful, timely and trustworthy evidence for policymakers, planners, health professionals, and the public. We aim to do this by -
Phase 1: Getting better information directly from patients and the public
· We will conduct a large survey of patients who have gone to their GP practice in the past year about a musculoskeletal problem. For comparison we’ll also invite some people selected at random from the same practices. The survey will include questions about pain, its impact, and quality of life. People will be given the option of completing the survey online or by pen-and-paper.
· We will run a study in selected GP practices and community/interface musculoskeletal services where each patient presenting with a musculoskeletal problem will be invited to complete an online survey at the point where they seek care and then again, several months later.
Phase 2: Joining up information from different sources
· People taking part in the surveys will be asked for their consent to link their survey responses to:
o their primary care medical record
o hospital visits, admissions, and procedures
o information they may have given in a similar survey back in 2017
· We will also link their survey responses to publicly available information on local services and neighbourhood characteristics.
Phase 3: Analysing and using the information
We will analyse the data and look at how our findings can be used to make better decisions about musculoskeletal care in the future. For example:
Which groups and neighbourhoods have the highest level of musculoskeletal problems? What might explain this?
How much variation is there in the types of care patients receive and whether they get better?
Can we measure the effects of introducing a new or redesigned service for patients with musculoskeletal problems?
How did you involve people?
Our grant application had two public contributors with lived experience of musculoskeletal pain and arthritis, and they shaped the application with a particular emphasis on prioritising benefit to patients and public and clarifying the route(s) by which this might be achieved. One of these public contributors sadly passed away shortly after we were awarded funding for the project. We made the decision, in consultation with our public contributors, to convene a dedicated Patient Advisory Group (PAG) comprising 7 public contributors (including the remaining public co-applicant) that would be involved across all aspects of the 50-month programme and supported by a PPIE co-ordinator. Working together as a group rather than 1-2 individuals, and outnumbering academic researchers in meetings, were important ways of shifting power towards the PAG.
The MIDAS PAG meet monthly throughout this programme of research on matters such as:
- What information we give potential participants and how we capture and maintain the public interest and make it rewarding for them to take part
- How we collect information that gives us the best chance of getting accurate, useful information
- How we share our findings with participants, the public, and other groups and maximise our chances of this research making a real difference
However, their involvement has extended over time well beyond that initial remit. They have become involved in:
· significant re-designing and re-planning of studies. Examples included adding a doorstep interview to improve the inclusiveness of our survey and reach a more ethnically and socioeconomically diverse population; to successfully advocate for extending the period of recruitment to our MIDAS-GP study to enable practices in the most deprived areas to participate
· Procurement processes. PAG members reviewed, interviewed, and selected the successful vendor for the tender for the doorstep survey
· Co-authorship. PAG members joined research papers as co-authors. They have also reviewed and contributed to regular reports to the funder
· Proposing PPI-led analyses of data. PAG members have identified research questions that they would like to answer from the data collected in MIDAS. We have arranged to allocate statistician time to these.
Detailed discussion on design, methods and conduct of proposed point of care cohort study; specific discussion on equitable access to study participation; extensive discussions on design of a landing page video to introduce the study to potential participants; input scoping for local charities that participants can donate to on return of a completed questionnaire; extensive feedback on online and paper questionnaire to develop the items and design; discussion of online invitation process; discussion of consent process whilst study was live to try and find out why patients were not consenting; discussion and suggestions on reaching out to diverse communities, introduction and discussion about Key Performance Indicators.
MIDAS Population survey development. Following a review by the PAG group the survey included questions on financial strain, accommodation stability and adequacy, food security, fuel poverty, access to transport, community involvement, career status, trust and community engagement, emotional support and employment status. MIDAS Population Doorstep survey - the group helped to 'interview' the market research companies and assisted the research team with making the final decision on which company to work with.
How did you find people to involve in your project?
Our PAG group is made up of individuals from the local area who have an interest in research, in particular on musculoskeletal research. Many of our members have experience of living with MSK conditions.
We used Keele Universities RUG to find people to become involved in our project, which currently has over 180 members.
How did you support people in your project?
We meet monthly with our Patient Advisory Group, this is a hybrid meeting, and all members of the group are provided with an agenda and the minutes of the previous meeting prior to the scheduled meeting.
Any planned presentations of review of materials including press releases, patient facing documents, protocols etc are distributed in draft to all PAG members prior to the meetings to ensure they have the opportunity to digest and reflect on the information before bringing their comments and queries for open discussion.
What impact did it have?
Development of research questions for the MIDAS GP study.
MIDAS Population study – direct input into the study design which resulted in several changes to the questionnaire, readability and flow. Offered suggestions to encourage more people to complete the survey.
Provided advice on media publication to produce an article in lay terms for a local newspaper.
What would you change if you could do it again?
Not much. Our PAG members have enthusiastically endorsed our approach and encouraged other research groups at Keele to follow our lead. Our approach of convening a group rather than individuals across the entire programme, of providing a regular, separate forum where public contributors outnumber academic researchers, where Chief Investigators and Project Managers are expected to attend and have honest and open discussions with genuine decision-making power
Ultimately, it would be good to shift the balance of power further towards public contributors by joint chairing or chairing of PAG meetings by one of our public contributors. However, we have been mindful not to impose additional burden/responsibility on PAG members.
What tips would you give another researcher?
Meet regularly with your PPIE group. We meet with our group monthly, and this helps to keep momentum going and ensure that all members are up to date on what stage the research project is at, and how they have actively contributed to outputs.
Ensure that sufficient time and resources are allocated to enable meaningful, timely, sustained PPIE. Build in some flexibility in your research plans and thinking.
Be open and honest in your communication and about what can and can’t be done.