HRA best practice principles of public involvement

Principle 1: Involve the right people

You should ensure you consider people’s lived experiences when defining the rationale, scope, design and conduct of your research.

Usually this means people who have experienced the health condition or social care situation being researched directly, such as patients and service users, but it may also mean carers of people with direct experience.

In research which involves healthy volunteers, working with members of the public may be appropriate.

It is important to work with people whose lived experience means they are likely to have a good idea of what will be acceptable to potential participants.

People’s experience of a health condition or social care situation never happens in isolation from the rest of their lives; consider the other valuable experiences and skills that people have which may be relevant and important for your research.

Principle 2: Involve enough people

Enough people should be involved to provide a reasonable breadth and depth of views on the issues that are likely to be important to the people the study will aim to recruit, and who it is intended to benefit.

The right number of people to involve in your research depends on the scope of the study. It should almost always be more than one person. One person is unlikely to be able to represent the needs and perspectives of an entire group of people, and it may be unfair to ask one person to take on that responsibility.

Consider how you will try to involve people who reflect the diversity of backgrounds and experiences you expect your potential research participants to have, and how you will work with people in a way which is as inclusive as possible.

Not everyone involved in a study has to be involved in the same way. A range of possibilities exist, with different people involved with different tasks or some people being members of the project team.
When you are deciding how many people to involve in your research, think about how many people you can involve well.

Principle 3: Involve those people enough

Relevant people should be involved in as many aspects of the study as is feasible, productive and appropriate to the research, and at the right times.

Involving people well means involving them as early as possible; plan for involvement right from the beginning of your project, and for how and when you will communicate with the people you’re working with. It may be helpful to have a nominated contact person on the research team with whom involved people can keep in touch.

Before the research begins

• identifying and prioritising research questions and outcome measures which are meaningful and relevant to the people the research is intended to benefit
  
• shaping the research methods and commenting on the feasibility of the research design, including the burden placed on research participants and the levels of risk/distress that they might be exposed to – helping to identify potential emotional or practical obstacles for participants. For example, advising on the recruitment process, e.g. how and when to approach potential participants
  
• contributing to grant applications or regulatory submissions and/or attending the Research Ethics Committee meeting to help explain how and why the study design is likely to be acceptable to participants
  
• commenting on or developing participant information and other documents which are used to communicate with prospective research participants so that they will be able to understand the study and be able to make an informed decision about whether or not to take part
  
• working on plain language research summaries
  
• developing and providing training to members of the research team.

During the research

• being part of research advisory groups and steering groups
  
• undertaking research projects, e.g. as a co-investigator, co-facilitating focus groups, or administering questionnaires.

After the research has ended

• contributing towards how and to who the study results are shared, either by advising researchers, presenting at conferences, or via social media.

Best practice in public involvement requires investing in relationships with the people whose experience is relevant to your research. It is important that there are shared expectations of what role each person will play. Consider carefully where, when, and how you will work together so that the involvement is meaningful.

Principle 4: describe how it helps

Our Research Ethics Committees want to know how you are working with the public in your research, because good public involvement is likely to address issues which are relevant to their ethical review.

Refer to our public involvement checklist for applicants to make sure you are including the information the REC needs to know.

Asking the the members of the public you’re working with to review this information in your application may help to check that you’ve described their involvement accurately.

It may also be helpful for one of the people who have been involved in your research to attend the Research Ethics Committee meeting.