In this blog, research teams’ Patient and Public Involvement (PPI) leads and project public contributors from four projects have come together to discuss how collaborating with patients, carers, and members of the public is improving the quality and usefulness of our research on multiple long-term conditions (MLTC).
When a big company develops a product, it does market research. It doesn’t ignore its customer, instead it finds out about what motivates the customer, what desires they have and what problems the company can help them solve. The result, in theory, not always obviously, is that a product comes to market shaped by its customer and their needs. Why should it be different for healthcare?
According to the Health Research Authority, public involvement "means research that is done ‘with’ or ‘by’ the public, not 'to', 'about' or 'for' them”. This statement is important because it recognises the contributions of people in research because research is the cornerstone of our modern health and social care system, nothing is implemented without evidence, evidence gained through research. Research is how the system is built, so let’s involve people in the design and implementation of that research.
A person is said to have MLTC when they have two or more conditions at the same time which are long-term in nature.
The National Institute for Health and Care Research (NIHR) has funded four projects under the Applied Research Collaboration (ARC) national priority funding stream on MLTC. Our projects are all implementation research projects - they are investigating how (and if) health interventions that aim to improve the patients’ health and wellbeing are set up and adopted into real-world healthcare settings.
Two projects (PP4M and UCLP-Primrose) are exploring new ways to care for patients when they see their healthcare teams. The other two (OSCAR and MONITORY) are exploring how to improve prescribing of medication in primary care.
Testing a new way for clinicians to focus on what matters to patients during health checks and address their MLTC at the same time. The study is evaluating the implementation of a template already developed for MLTC and adapting it to make it more personalised.
Implementing an evidence-based care pathway to help people with severe mental illness to reduce their risk of cardiovascular disease.
Structured medication reviews are where a pharmacist/GP meets face-to-face (or remotely) with a patient and goes through ALL of their medication in one session. Do they work?
Using Audit-based Education (educational videos and dashboards) to help GPs reduce wasteful practices.
Public Involvement in MLTC research
The key thing about public involvement is that it brings another perspective into discussions, and that is the unique knowledge and lived experience that comes from living with MLTC. This perspective may be different to that of researchers or clinicians.
The MLTC Programme team included public contributors during the prioritisation phase, when the decisions were made about which projects were funded. The project teams have worked with patients, carers, and members of the public to build in their views and perspective throughout the projects, for example:
- Being co-applicants for the grant,
- Designing the study,
- Designing additional intervention material development,
- Supporting governance,
- Data collection and analysis,
- Discussion around dissemination.
The public contributors in our projects have raised important questions and suggested ways forward related to diversity, ethics, study access, and keeping the patient, carer, and public at the heart of the research, even when implementing interventions at clinician level.
The teams are using two approaches to capture the difference that public involvement makes to the projects. Impact Logs are a simple way to record the difference public involvement makes to a project, whilst the Cube approach evaluates the process and quality of public involvement.
Each research team completed an equality impact assessment for their project (an example from the UCLP-Primrose Study is HERE). This process helps research teams ensure that groups and individuals who face disadvantage are included in research projects.
The research teams’ public involvement leads and public contributors work together in a national public involvement group, led by the ARC East Midlands. This group has collaborated to write this blog by sharing impact data and reflections using a template, contributing towards a national MLTC public involvement workshop, and supporting each other to improve the quality of public involvement.
Implementation research projects about MLTC come with added challenges compared to projects that focus on a single condition such as diabetes or heart disease. We are only just starting the journey to design care systems for people with MLTC and it is very complex. Including patients, carers and the public in our research is crucial to make sure that the health and care systems we design are fit for purpose.
However, in the same way that the health and care service is not designed to meet the needs of people with MLTC, neither is the research system. There are relatively few MLTC public involvement groups and there is work to be done to find a way to hear the voice of MLTC patients and carers. We view this next step of the journey as positive and needed, and as more research is set to focus on MLTC, it requires careful consideration.
Many of our discussions have been about how best to achieve high quality, meaningful public involvement throughout our projects. We have shared success stories with each other, such as:
- using a ‘live’ role description to improve clarity of the public contributor role,
- having a central coordinator for the project to facilitate consistent information sharing and organisation such as payments,
- ongoing communication during ‘quiet periods’, to maintain relationships with public contributors.
Our national group has been crucial in providing a forum and safe space to share challenges, provide peer support and advice and agree common approaches across the projects e.g., the use of impact logs to capture the impact of our public involvement.
Understanding the direct role of public involvement can be difficult in MLTC projects. Two of our projects are focused on interventions for GPs. This led to a debate about ‘who is the end user’? While patients are always the ultimate beneficiary of these projects it has highlighted that other stakeholder groups (GPs in this case) also need to be given the opportunity to contribute their experiences and knowledge. But this can be hard when the health and care service is under such strain.
At a recent MLTC event where our four research projects presented and discussed their research so far, we facilitated a workshop hosting researchers, clinicians, and public contributors. We discussed the challenges of public involvement in MLTC research and what this might look like in the future. This will be the focus of the next blog in the series.
Published on: 26 Sep 2023