We help organisations who involve patients and the public with:
- Clarifying the purpose of involvement
- Learning from experience to improve practice
- Working with patients/ the public to develop policy
- Engaging others and sharing learning
Clarifying the purpose of involvement
Many organisations are fully committed to the principles of involvement and follow excellent practice. However, sometimes the way in which involvement can specifically help their organisation is unclear. By looking at how involvement adds value to the decisions they need to make, we can help them to be clearer about why they need to involve patients or the public, and who would be best to involve.
See our publications for journal articles based on this work.
Examples of recent clients include:
We explored how Research Ethics Committees (RECs) could use researchers’ reports of involvement to inform the process of ethical review. We assessed what happens in current practice and the information that researchers’ typically provide RECs. This work led to changes in the questions on ethics application forms, and to new training for REC members on the links between public involvement and ethical review of research.
We reviewed how NICE committee members make use of written patient statements during their assessments of new health technologies. We explored how patients’ input adds value the committee’s decision-making. This work led to changes in the NICE template used by patient organisations to submit patient statements.
We evaluated the impact of lay involvement in medical revalidation. We explored how involvement currently impacts on decisions made by revalidation committees, and the potential for the involvement of people with different kinds of expertise to bring added value to their work. This project helped to clarify the need for different approaches to involvement at different levels and stages of the revalidation process.
Learning from experience to improve practice
In the past, much emphasis has been given to ‘proving involvement works’, to encourage professionals to work with patients and the public. Now the emphasis is on improving the quality of any involvement that takes place, to ensure it is meaningful. We aim to work as ‘learning partners’ enabling organisations to reflect on and learn from their experience, to make changes in real-time to improve practice.
See our publications for reports from these projects and other evaluations.
Examples of recent clients and projects include:
We evaluated the ‘Leading Together Programme’, which aimed to develop leadership skills in professionals and patients/ the public as a means of promoting co-production. This Programme was designed and developed by Oxford AHSN in partnership with NHS England, the NHS England South Revalidation Team and The Thames Valley and Wessex Leadership Academy. The learning from the evaluation will be used to inform further development of the Programme in future.
We evaluated a pilot project to support the involvement of volunteers in research within the charity. The evaluation identified the different ways in which the involvement impacted on the research, the researchers, staff and volunteers, and generated important lessons for the organisation in terms of how they can best support this work in future.
We evaluated the FAST-R panel, which was set up by the MHRN. This project revealed the different ways that patients contribute to review of research protocols and patient information sheets. The findings had implications for how such panels need to be established and for the role of public involvement in supporting ethical review.
Working with patients/ the public to develop policy
The Wellcome Trust awarded us a grant to carry out a project with voluntary organisations in order develop their policies on when they should help with recruitment to research. We worked with Rethink, the Stroke Association, The Neurofibromatosis Association and Asthma UK to help them develop their policy and practice.
The Advisory Group for National Specialised Services (AGNSS) commissioned us to support two groups of patients with very rare diseases to produce patient submissions. AGNSS took this evidence into consideration when developing their recommendations to ministers on whether to provide drug and services for people with extremely rare conditions.
We have worked on a number of James Lind Alliance Priority Setting Partnerships to support projects aiming to identify patients’ and clinicians’ priorities for clinical research. The aim is for these priorities to influence the decisions of the funders of research.
Engaging others and sharing learning
We have worked with INVOLVE for over 15 years to identify evidence of impact, write case studies, and develop guidance and policy on involvement.
See our publications for the reports and websites we have developed for INVOLVE.
We have produced case studies for the ‘Join Dementia Research’ service to explain how the service works and how it supports recruitment to dementia research.