Support for researchers
As part of the Biomedical Research Centre, Nowgen helps researchers involve patients and the wider public in the research process. This includes delivering training and creating support tools.
Over the past ten years, the process of empowering patients and the public to take an active part in health-related research has been highlighted as an NHS priority. The National Institute of Health Research (NIHR), states: “We want patients and the public to be involved in all stages of research. This covers:
- Setting research priorities
- Helping to decide what the research is setting out to achieve
- Choosing the methods used to carry out the research
- Recruiting people into research studies
- Understanding what the research findings mean for patients and how it can be applied in the health service
- Publicising the results”
During late 2010, Nowgen mapped the involvement and engagement activities undertaken within the Biomedical Research Centre to get the views of senior researchers on:
- What kinds of involvement and engagement work they and their teams had done
- The challenges of involvement and engagement and what could be done best to support these activites in the BRC.
Nowgen has compiled a report of the findings, which will help us improve how we engage and involve people in our research. The report also explaines future plans for engagement and involvement within the Biomedical Research Centre.
The report can be viewed via the link below.
Nowgen has published a brief guide for researchers on how to incorporate meaningful Patient and Public Involvement into Research for Patient Benefit (RfPB) projects. The guide, which can be downloaded below, provides tips, things to consider and sources of further information.
For more information on the support available for researchers, please contact:Kate DackPublic Programmes ManagerTel: +44(0) 161 276 8943
Putting it into practice: Involving patients and representatives
The Biomedical Research Centre contributed to a review by the UK Genetic Testing Network which identified the inequality of services for families with inherited eye disease and called for an evidenced based approach to service provision.
Our £500,000 Fight for Sight programme grant, awarded to Professor Graeme Black in 2009, involved written feedback from patients and lay representatives as part of the project design and grant application. This group have now formed a Patient Advisory Group which meets regularly to discuss design of the research and ensure that we are aiming towards timely translation into improved patient care.
The Patient Advisory Group has provided feedback on written documents prior to ethical approval, designed genetic tactile diagrams and evaluated communication tools used in genetic eye clinics, hopefully leading to improved recruitment and quality of data collection.
The group has also fostered wider collaborations resulting in a proposed joint workshop with the Royal National Institute of Blind People to contribute the needs of inherited eye disease in national strategies.
“The involvement of patients and representatives at every stage of this research has been invaluable and has shaped the direction of our work. I would encourage all researchers to consider patient and public involvement as a fundamental part of their research projects.”
Professor Graeme Black, Biomedical Research Centre Director
- The NIHR Research Design Service for the North West has developed detailed guides for researchers looking to involve patients in their work. This includes an extensive resource pack (116KB) and how to guide.
- INVOLVE have written many excellent resources, including a valuable guide giving examples of how NIHR Senior Investigators are involving the public (428KB) across all stages of the research process.
- The National Research Ethics Service and INVOLVE have developed a statement on Patient and public involvement in research and research ethics committee review (117KB).
- People in Research provide researchers with the ability to find members of the public who are interested in being actively involved in research. They also provide guidance on doing this in the best way possible.
- Picker Institute provides a comprehensive and accessible overview of good practice on patient and public involvement in healthcare.
- Value+ Toolkit collates good practice from across Europe to support meaningful patient involvement in research.
- Routemap from Twocan Associates suggests ways to involve service users at different stages of the research process.