Involvement in research
Patient and public involvement can occur throughout the research cycle. You will have to plan what level and type of involvement is most appropriate for your study. Each university will have their own guidance available to support you in involving patients and the public in your research. Please contact your local PPI coordinator for more information. INVOLVE has also published an online sharing platform where resources are shared which provide support on various elements of patient and public involvement and Healthtalk have produced various videos where researchers share their experiences with patient and public involvement.
Planning patient and public involvement
When you start planning a study and its involvement, you should start with identifying its purpose, who you want to involve and what resources are required to materialise your plan. It is important to allow enough time to create your involvement plan. Cancer Research UK has developed a patient involvement toolkit for researchers. The toolkit contains guidance, tips and templates to support your involvement activities.
The School has developed a template to record your involvement activities. Using the template will support you in planning your involvement and keep track of your successes and challenges. The template will also help you to report the progress of your study to your funder, supervisor or department.
The NIHR Research Design Service has capacity to support the development of grant applications to the NIHR and other open, national, peer reviewed funding competitions for applied health or social care research free to charge. They can advise on various aspects of grant development, including support on how to involve patients and public in the research design. Ensure that you contact your regional RDS centre at an early stage of your bid development.
Some university engagement funds cover the costs of involvement activities pre-funding. Contact your local PPI coordinator for more support in gaining access to these funds. Pre-grant involvement could be done remotely to reduce expenses (e.g. using telephone/ Skype/ FaceTime, or digital comments), if appropriate for the nature of the study and the people you want to involve.
If you have no access to funding for pre-grant involvement activities, you could seek involvement contributors to help on a voluntary basis (with travel expenses reimbursed). You will have to assure your public contributors that, if the project is funded, their time will be costed in the involvement budget.
The James Lind Alliance has worked on identifying priorities within research areas as identified by the public. The Alliance uses Priority Setting Partnerships to identify and prioritise the Top 10 uncertainties, or unanswered questions, about the effects of treatments. Clinicians, patients and carers work together to identify and prioritise the top 10. The identified priorities can inform and inspire your grant application.
It becomes more common to include public contributors as a co-applicant to grant applications. Though this is not a funding requirement, public contributors can add valuable knowledge, experiences and skills to the management of a study. The Public Co-Applicants in Research – guidance on roles and responsibilities provides advice to both researchers and public contributors when working together as co-applicants.
It is important to provide feedback to your public contributor on their involvement. It is valuable for public contributors to know if their input was useful and how they can improve in their role. Feeling appreciated and, where applicable, feeling a difference was made via involvement can be motivating to public contributors to stay involved in yours or other’s studies. The feedback also supports you in identifying the impact that involvement had on your study, which is data funders are very interested in. The Guidance for Researchers: Feedback can support you on how to give feedback to public contributors.