It is important to plan patient and public involvement (PPI) from the start of your research, and to involve patients and the public in the planning as early as possible.
You do not need to get ethical approval for involving people in the planning or advising stages of research.
For example, they could be a member of an advisory group or co-applicant on a research grant without the need for ethical approval.
There are a number of things to consider and plan before beginning PPI:
- Policies and procedures
- Training and support
- Finding people to involve
- Evaluating PPI
Policies and procedures
It is important that you have clear policies and procedures which provide necessary information for people who you are inviting to be involved, as well as for your research team and other relevant departments in your organisation, for example, finance and human resources.
You will need to develop a job or role description giving details of exactly what is involved.
Other things to organise include: payment and expenses policies; travel and expenses claim forms; methods for payment; confidentiality agreements; health and safety; honorary contracts; insurance; and Criminal Records Bureau checks.
Involving patients and the public has cost implications and also will require additional time. Make sure you include realistic costs for this in your budget. Research funders will expect to see adequate costing for PPI in project proposals.
Costs to consider include: travel and subsistence expenses; childcare and carer costs; payment for time and work undertaken; and training and support.
INVOLVE provide some very useful guidance about payment:
Training and support
In addition to training and support for members of the public involved in the research, members of the research team may also need some form of training and/or support.
Training might be formal sessions or courses, ‘on the job’ or sharing knowledge and experiences with colleagues and peers.
Support might be from other team members, a mentor, team or one-to-one meetings or some form of peer support.
INVOLVE have a comprehensive resource which offers advice and guidance on developing training and support packages for members of the public and for researchers, specific to your context.
Finding people to involve
First you need to decide who you want to involve. What knowledge and perspectives are you looking for? Individuals cannot represent everyone and it is better to think in terms of looking for different perspectives rather than people who are representative.
Consider whether you need the perspective from people who have experience of a specific condition, service or treatment, or a more general perspective from a member of the public.
Are you looking for the perspectives of individuals, or the views of an organisation or group? Also think about what sort of experience of involvement in research you are looking for.
The number of people to involve depends on how many different viewpoints you need. There are several advantages to involving more than one person.
Once you have decided who you want to involve there are a variety of ways of making contact with organisations and individuals including:
- Networking with patients or community members
- Advertising in physiotherapy departments, GP surgeries, local newspapers or radio
- Contacting local or national patient support groups and voluntary organisations
- Searching online for organisations
- Social media
- Networking with other health care professionals
- Putting details on websites which offer opportunities to be involved in research, for example, the People in Research website
You need to document public involvement throughout your research project and evaluate how well it has worked and the impact of PPI. Plan how you will record and evaluate your PPI from the start of the project.
Demonstrating impact of research is essential and research funders will ask you to report on impact. Measurement of impact is also an important component of the research excellence framework (REF), the system for assessing the quality of research in UK higher education institutions.
There are a number of resources for recording and evaluating impact on the website for the Economic and Social Research Council:
For further information on how to involve the public in research:
INVOLVE Briefing note five: How to involve members of the public in research
INVOLVE Briefing note six: Who should I involve and how do I find people to involve INVOLVE Briefing note six