Understanding meaningful public involvement in health and social care research
Evidence Hub
Understanding meaningful public involvement in health and social care research
Quick-read summary
Public involvement refers to researchers working alongside and together with patients, carers and other members of the public.
Often, research teams will carry out evaluations of public involvement activity that has taken place within their research project. This can capture what has worked well, or not so well, and why. Evaluating public involvement in this way allows teams to share and learn from best practice and reduce the likelihood of any problems reoccurring in future.
In this piece of research, a team of public partners and researchers came together to review past evaluations of public involvement in applied health and social care research.
The findings from the work highlight a range of priorities for researchers, organisations and funders to ensure best practice is achievable.
Who is this evidence useful for?
Research funders, research delivery organisations, individual researchers, public involvement and engagement professionals, those working in health and care and/or anyone with an interest in developing meaningful partnerships with patients and the public.
What is the issue?
Patients and members of the public have a right to be involved, as partners, in research that affects them. Past research has also shown lots of benefits around involving the public in research, such as more inclusive participant recruitment strategies and easier-to-understand research information and outputs.
Despite this, researchers are sometimes unsure how best to work alongside the public in their research. ‘Tokenism’ is also an issue in public involvement – this is where members of the public are invited to collaborate but are given no real opportunity to influence or change the research process or research outcomes. Some members of the public may also find it difficult to access research spaces.
It is important to understand things that help, or do not help, meaningful public involvement to take place.
As such, it is recommended that research teams reflect on, or assess, their public involvement activity. Research teams may share this learning, but it is not always clear how they have come to their conclusions, or who was involved when deciding what difference public involvement made.
This work aimed to have a better understanding of the evidence base in this area. Having a better understanding of the evidence base would help develop more high-quality public involvement and future evaluation approaches.
Research summary
We carried out a ‘rapid systematic literature review’ – this means we carefully searched a number of databases, reference lists and two key academic journals (Health Expectations and BMC Research Involvement and Engagement), to identify published research articles of interest between 2006-2024.
We were interested in finding studies that evaluated public involvement in applied health and/or social care research.
A team of public partners, researchers and public involvement professionals selected and reviewed relevant articles.
We noted topics and themes that came up across the included articles and grouped them as being related to:
- Contextual factors – things ‘in the background’ that influence public involvement such as location of activity, shared beliefs, whether the public’s time and expenses were covered etc.
- Effective strategies of involvement – such as group meetings or social events
- Outcomes – any reported changes, outputs, or events that occurred directly or indirectly as a result of public involvement
- Public partner experiences – these could be positive or negative
Key Findings
- Public partners described important aspects of ‘meaningful’ public involvement from their perspective. For example, mutual respect, being able to give back to their communities and see and contribute to real change.
- Importantly, there were also some unintended negative consequences of working within research. For example, public partners had experienced anxiety, frustration or in some cases had heard upsetting or discriminatory language from participants.
- A broad range of factors were found to support and enable public involvement activity. Enabling factors included embedded support and training for research staff, clear leadership of public involvement activity, conflict resolution skills and local knowledge.
- However, structural and other barriers were also reported and made partnership working more difficult. For example, short timescales from funders, limited funding for early-stage public involvement, and existing professional tensions (e.g. between researchers and healthcare practitioners).
Unresolved barriers to public involvement appear to increase the likelihood of unintentional harms for public partners. Full findings were summarised in a model of evidence-based, meaningful public involvement.
While assessing the quality of the included papers – we also noted varying reporting quality. This means it was sometimes not clear, for example, how evaluation data had been analysed and/or there was very little detail regarding how public partners were involved within the process itself.
Why is this important?
These findings give an overview of the complex dynamics affecting public involvement and includes the often-under-reported negative unintended consequences for public partners.
Public involvement must be supported by researchers, research delivery organisations and funders to reduce unintended harm and encourage meaningful outcomes. Research funders have a particularly important role in supporting and enabling more diverse forms of public involvement.
As part of this work, we have developed a model of evidence-based, meaningful public involvement in applied health and social care research (which you can view here or download from the bottom of this page).
This model gives organisations and individuals key areas to prioritise and can be further tailored to support research inclusion in many different contexts – for example to support partnership working within ethnically minoritised communities, those with learning disabilities and so on.
The methods and quality assessment within our review also highlight potential improvements that could advance evaluation of public involvement in future work.
How were people/community groups/patients involved in this work?
Public partners were involved from the outset of this project. Our regional Public Advisory Network discussed and approved the review concept. Three public partners were also part of our core team, took part in bespoke training and contributed throughout the entire process. We have included more in-depth details on how public partners were involved in the full paper linked below.
Recommendations for policy/practice
- Research organisations and funders should work to address and minimise some of the structural barriers to meaningful public partnerships such as funding and time constraints.
- Efforts should also be made to include a more diverse range of public partners, particularly those with minimal past knowledge or experience of research. This is important to ensure the reported benefits of public involvement (such as skill development, increased confidence and access to further employment or education) are more fairly distributed.
- There should be a greater focus on the development of transparent evaluation approaches to improve our understanding of meaningful, inclusive public involvement in health and social care research.
- In particular, we suggest research teams consider independent and/or community-led assessment of public involvement activities.
What happens next?
We are currently sharing the findings of this research with a range of different researchers, public involvement leads, healthcare practitioners, public partners and others who are interested in improving partnership working with the public.
This work is also currently informing engagement and involvement work within Deep End primary care and communities.
Read the full research paper
Partners in the study
Newcastle University
Northumbria University
NIHR ARC NENC Public Advisory Network
NIHR Patient Safety Research Centre
Funding
This project was funded by NIHR ARC NENC
Get in touch
Lead researcher: Dr Angela Wearn
Email: [email protected]