Who: Faculty of Health and Life Sciences, UWE Bristol and NHS partners
What: Public involvement in research consortium
Why: Ensure public are involved in research in a more effective way
Where: Across Bristol and more widely in the South West
When: Scoping study completed, now we’re working to make it a reality
The background to the initiative is the increasing importance of public involvement in research, the close partnership between the UWE with NHS partners through BRIG-H (Bristol Research and Innovation Group for Health), and the growing requirement by research funders in general, and the National Institute for Health Research (NIHR) in particular, that grant applications demonstrate genuine public involvement. Currently there is no local co-ordinated approach and there are many challenges for individual organisations to enable meaningful public involvement in research.
There is an increasing evidence base on what constitutes effective public involvement in research and useful national guidance from INVOLVE. However, no one local organisation has the resources to address the multiple elements that need to be put in place. Moreover, research projects are increasingly large and complex and may involve more than one university, NHS trust or NIHR research network, so there is a need for a shared approach.
The first stage of the project was to undertake a scoping study to identify experiences and share learning on current systems and practice relating to public involvement in research across fourteen stakeholder organisations in the South West. The scoping study was completed and launched at a consultation event in April 2010. Subsequently a new consortium to support public involvement in research has been agreed between the Faculty of Health and Life Sciences at UWE Bristol and six South West NHS organisations.
“I see this event as a major step forward – overall very encouraging”
“An extremely useful conference which generated lots of ideas – just need to follow up!”
Starting in January 2011, funding has been agreed initially for two and a half years, and the consortium will link to the existing BRIG-H. The consortium will work collaboratively with other partners including NIHR topic specific research networks, the Research Design Service South West and other NHS trusts and universities in the region. A full-time co-ordinator will be appointed in the Faculty but will be physically located with North Bristol NHS Trust, the lead NHS partner.
The consortium will deliver a number of outputs and outcomes over the next two and a half years. These will include the development of a website to disseminate the resources produced, which will include a toolkit for shared policies and procedures on public involvement, a data base of good practice, training programmes for both members of the public on getting involved in research and for researchers on involving the public, and induction and mentoring schemes. In addition, it is intended to support the development and submission of more collaborative bids with the public actively involved and to develop a business plan for the long term sustainability of the scheme.
This project will develop and evaluate a shared approach to supporting public involvement in research across a consortium of six NHS stakeholders and UWE Bristol.
Results and outcomes
What worked well
This initiative has benefitted from the synergy of national strategy and local partnership working. The strategic commitment of the Department of Health and the National Institute for Health Research has provided a supportive context for this initiative. But the key catalyst was the informal coming together of academics and research managers locally, all of whom were committed to taking forward public involvement in research but each individually had relatively limited resources to do so, and recognised that the issues went beyond those that could be addressed by any single organisation. Four individuals got together to start the process and in the end a network of fourteen university and NHS stakeholders agreed to work together.
The approach was inclusive, so that who were able to invest money did so, but others were still kept in the loop. The initiative benefited from the existing strong service user input at UWE and two service users were recruited to the project steering group. Once the scoping study was published, the same flexible and inclusive approach was adopted, so that those who were able to invest in the subsequent project did so, whilst others remained as part of a wider network.
What didn't work well
The scoping study was hampered by the lack of routinely available data on policy and practice on public involvement in research within participating organisations. Often there is no organizational level policy and different departments, research groups and researchers develop their own approach to public involvement in research.
Stage 2 was initially planned as a Knowledge Transfer Partnership but this was unsuccessful.
National policy developments, financial constraints and the rapid pace or organisational change in the NHS meant that not all those NHS stakeholders who originally intended to commit to the consortium were able to do so.
- Time and commitment from stakeholder organisations, including support for project steering group
- Involvement of public/service users from the beginning
- Total funding invested in both stages of the project c. £133,000 over 3.5 years
- Develop your initiative in line with national public involvement in research strategy.
- Involve stakeholders from all local universities and NHS organisations from the very beginning.
- Involve experienced service user research partners from the very beginning.
- Scope the need before planning your initiative.
- Be prepared to be flexible in seeking funding, and identify alternative routes if at first unsuccessful.
Name: David Evans
Name of organisation: Faculty of Health and Life Sciences, UWE Bristol
Telephone: 0117 328 8750