Who should I involve?  

In deciding who best to involve it is important to think about the knowledge and perspective that you are looking for from members of the public, and what support you are able to give to people who you plan to involve.

Even if your research is about informing practitioners about approaches to practice, the end user of the research will be the person receiving the practice. In some research projects you will want to consider involving both practitioners and members of the public:

  • You may want input from people who have experience of a specific condition, service or treatment. In this instance a carer might not be appropriate. In some types of research such as childcare the different needs and perspectives of carers, parents and children might be required.
  • Sometimes you might need a more general perspective from a member of the public.
  • Think about whether you are looking for the perspectives of individuals or if you are looking for the collective voice of an organisation or group.
  • You may wish to involve people who have no previous experience of getting involved in research or you may wish to involve those who have experience of working on other research projects or of involvement in other health or social care organisations.
  • It may be useful to prepare a brief ‘person specification’ to help you think about who you wish to involve, but it is also important to be flexible.

Involve more than one person

Involving more than one person will have the advantage of allowing you to involve different people at different stages of the research process, and allow people to choose how they want to be involved.

It will also help you to:

  • increase the breadth of experience and skills brought to the project
  • provide an opportunity for those involved to support and encourage each other
  • maintain a public perspective within the project if people are unable to attend due to illness or other commitments.

Researchers often ask how they can ensure that the people they involve are ‘representative’. However it is more helpful to think about seeking people’s perspectives rather than looking for people who are representative. Consider the broad and different views and experiences you will need to include and how you are going to involve people. Try to ensure that you have a variety of perspectives so you get different viewpoints and allow time for those who have the skills you require for the project to network with others.

Members of the public cannot be representative of everyone who uses a particular service or has a specific condition. Equally we would not expect one clinician, for example, to be representative of all clinicians.

For most studies it is not appropriate for people involved in the research to also be participants in the research as that can compromise both the researcher and the person involved. The possible exceptions to this may include some participatory/action research studies where the participants of the research may also be acting as co-researchers, influencing the shape of the study as it progresses.

How do I find people to involve?

Once you have considered who you would like to involve, you then need to think about how to make contact with them. Speak with colleagues and members of the public and ask for their views on how to find the people you want to involve.

Allow time to make contact with organisations and individuals as finding people will nearly always take longer than you think.

Others have contacted people by:

  • asking community members or patients about people who might be interested in getting involved
  • advertising in GP surgeries, outpatient departments, local newspapers and on the radio
  • talking to local or national patient support groups and voluntary organisations
  • searching online for relevant organisations
  • using online social media such as Facebook or Twitter
  • talking to other health and social care professionals such as community development workers, social workers, health visitors, GP practice managers
  • contacting the Patient Advice and Liaison Service (PALS) Officer based at your local NHS Trust
  • putting details of the opportunity for people to get involved on the People in Research website so interested members of the public can make contact.

Individuals were recruited through several chronic disease patient groups identified by the patient liaison officer at the local primary care trust (PCT).  To maintain confidentiality the prospective members of the public received an information sheet about the research asking them if they would be interested in being part of an advisory group.  The information was prepared by the researchers but it was sent out by the patient liaison officer to members of patient groups active within the PCT. 

(Sutton and Weiss 2008 page 233)

Spend time developing networks and building relationships.  This might involve visiting organisations to hear about what they do and talking to them about your research.

Putting Evidence for Older People into Practice in Living Environments (PEOPPLE)
In the PEOPPLE project the School of Health Sciences and Social Work at the University of Portsmouth worked in partnership with key non-statutory organisations that were central to engaging with the local community and would be collaborators on the study.

Many researchers develop long term relationships with organisations and individuals that continue for many years past the involvement in the first research project.

Be aware that some people or organisations might choose not to get involved in your work. This might be for a variety of reasons but it might be because their aims do not match yours, they do not have the time, or because the practical costs of either getting involved or finding somebody to get involved in your work is too great. Some organisations charge when they are asked to find people to get involved in research activities.

Find out more about how to find people to involve:

Strategies for diversity and inclusion in public involvement: Supplement to the briefing notes for researchers (INVOLVE 2012)

People in Research – a national resource to help members of the public find opportunities to get involved in research and for research organisations / researchers to advertise involvement opportunities

Involving London has a range of information and opportunities for public involvement in research in London

North West People in Research Forum – supporting patient and public involvement and patient engagement in health research in the North West

Patient UK has a comprehensive list of national and local support groups and organisations