Patient and public involvement in research is used to refer to the active involvement of patients or the public in the research process – for instance in helping to plan, design or carry out research. It does not refer to more general awareness raising activities or to the involvement of people as participants in trials.

For the purposes of eligibility for this bursary fund, we limit our use of the term to the definition of public involvement used by the national advisory body INVOLVE (see appendix below for more information).

Patients and the public can:

• help identify research questions and priorities
• look at research processes and advise researchers on how practical and acceptable they are
• advise researchers on outcome measures and how meaningful and reliable they are to patients
• improve the language and accessibility of patient information and invitation letters
• help carry out trial recruitment or interviewing
• become advocates and disseminators of research findings.

There are different levels of patient/public involvement. For instance, patients/members of the public may be:

• joint grant holders/co-applicants on a project
• members of a project steering group or patient panel
• participants in a one-off workshop.

There isn’t any one good or bad way of involving patients and the public in research. The level of involvement and the stages of the research process at which patient and the public are involved may be determined by the nature of the research project.

Researchers are invited to apply for up to £500 to actively involve patients and the public in their research.

• This involvement may be in one particular project or selection of projects, or in setting research priorities at departmental or divisional level.
• Applications are encouraged that fit in with one or more of the priorities of the fund (see above).

The maximum bursary for the Public Involvement Starter Grant is up to £500, and there are four starter grants are available for the round.

All expenditure must be in compliance with the budget set out in the application form, and the guidance provided when the attached application was made, for costs such as venue hire, refreshments, vouchers for participants, stationery etc. Should you wish need at a later date to change the items that the funds will be spent on, spend on items other than those above please contact the PPI manager for approval.

As a condition of this award, the BRC Executive shall require an annual financial report to be submitted, and acknowledgement of the BRC in all publications arising from the work. In January each year (or six months after the receipt of your bursary whichever comes first) you shall be required to complete an Annual Statement of Expenditure (ASTOX). If this is not provided when requested you may be invoiced for the bursary funds.

At the end of the award period a final Statement of Expenditure will be requested and you will need to provide a report on the project in the template that will be sent to you. Any funds that remain unspent will be invoiced for.

Applications will need to demonstrate:

• how the grant will enable researchers to establish and maintain public involvement from early on in their study
• how public involvement will impact on a research study or research area
• how the impact of public involvement will be recorded and evaluated
• steps taken to ensure the representativeness and appropriateness of the people involved
• how individual patients or members of the public will be identified and enlisted
• how individual patients or members of the public will be supported
• outline breakdown of likely costs
• we are particularly interested in involvement that seeks to support involvement of seldom heard groups
• timetable – with completion of all activities by 12 months after the bursary is awarded

Applicants will need to fill in the relevant application form and send it via email to ppihelpdesk@ucl.ac.uk. If you have any queries, contact the Public Involvement team on ppiheldesk@ucl.ac.uk.

• The principal applicant for funding must be a member of UCL staff. These bursaries are not available for undergraduate or masters students.
• The proposed project should be for biomedical research at UCL or UCLH.
• This bursary is available to projects and initiatives that fall within INVOLVE’s definition of public involvement in research. Accordingly these bursaries are not available for the kind of activities INVOLVE calls ‘engagement’ or ‘participation’ (see appendix below).
• Bursaries cannot be used to pay UCL or NHS staff for their time.

Your application will be read by the Patient and Public Involvement Manager at the Biomedical Research Centre who will attach a one-paragraph review of the application.

The application and review will then be considered by a panel made up of senior staff from UCL/UCLH and a patient and public involvement representative.

The panel will consider:

• whether the project fits with the strategic aims and priorities of this fund (see above)
• the potential immediate and long term impact of the project on research and how it will be evaluated
• whether the project can realistically be delivered within cost and time constraints
• the likely quality of involvement in terms of it being a positive and meaningful experience for both public and researchers.

Successful applicants will be expected to provide a detailed written report on their project when it is completed. Successful applicants will also be asked to share their ideas and work with others.

INVOLVE is the Public Involvement advisory body for the National Institute for Health and Care Research

“INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants.

“When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services. Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services.

What public involvement in research is not

The bursary fund does not fund projects aimed at

• raising awareness of research, sharing knowledge or engaging and creating a general dialogue with the public
• the recruitment of patients or members of the public as participants in research.

Funded projects may, however, actively involve the public to find ways of raising awareness or recruiting participants.

“Researchers and others use different words to describe public involvement, for example words such as engagement and participation.  When INVOLVE uses the term ‘public involvement’ we are not referring to researchers raising awareness of research, sharing knowledge or engaging and creating a dialogue with the public. We are also not referring to the recruitment of patients or members of the public as participants in research. However, these different activities – involvement, engagement and participation – are often linked and although they are distinct can complement each other. For example, the public can and do play a valuable role in advising on recruitment of patients as participants and on ways of engaging with the public.”

INVOLVE uses the following terms to distinguish between the different activities:

Involvement 

Where members of the public are actively involved in research projects and in research organisations.

Examples of public involvement are:

• as joint grant holders or co-applicants on a research project
• involvement in identifying research priorities
• as members of a project advisory or steering group
• commenting and developing patient information leaflets or other research materials
• undertaking interviews with research participants
• user and/or carer researchers carrying out the research.

Participation

Where people take part in a research study.

Examples of participation are:

• people being recruited to a clinical trial or other research study to take part in the research
• completing a questionnaire or participating in a focus group as part of a research study.

Find out more about participation in trials:

• UK Clinical Trials Gateway 
• NHS Choices information on clinical research 

Engagement 

Where information and knowledge about research is provided and disseminated.

Examples of engagement are:

• science festivals open to the public with debates and discussions on research
• open day at a research centre where members of the public are invited to find out about research
• raising awareness of research through media such as television programmes, newspapers and social media
• dissemination to research participants, colleagues or members of the public on the findings of a study.

Find out more about engagement:

• The Beacons project National Coordinating Centre for Public Engagement

About INVOLVE: “As a national advisory group our role is to bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.”