FIRST PUBLISHED IN ISSUE 127 (2018)
Hopefully, everyone reading this article is familiar with PPI: not insurance which has potentially been mis-sold, but rather ‘patient and public involvement’!
Humour aside, PPI is one of the most important factors influencing the development of research and, for most of us, affecting our successful delivery of metabolic and endocrine findings.
Good PPI improves the quality of research. Patients and the public can be involved in many ways, including helping to design research, making sure the research is relevant, advising on which research should be funded and reviewing project applications.
UNDERSTANDING INVOLVEMENT
INVOLVE is part of the National Institute for Health Research (NIHR). It 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 and undertaking interviews with research participants.’
INVOLVE uses the following terms to break down the activities.
Involvement
This is where members of the public are actively involved in research projects and in research organisations. Examples of public involvement include people taking part:
• as joint grant holders or co-applicants on a research project
• in identifying research priorities
• as members of a project advisory or steering group
• in commenting on and developing patient information leaflets or other research materials
• in undertaking interviews with research participants
• as user and/or carer researchers carrying out the research.
Participation
This is where people take part in a research study. Examples of participation are people joining in:
• as recruits to a clinical trial or other research study, to take part in the research
• to complete a questionnaire or participate in a focus group as part of a research study.
Engagement
In this case, information and knowledge about research are provided and disseminated. Examples of engagement are:
• science festivals open to the public with debates and discussions on research
• an 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, newspapers and social media
• disseminating the findings of a study to research participants, colleagues or members of the public.
'Nurses are perfectly positioned to play an important role in the process of involvement. We recognise and value the involvement of patients and the public in research.'
HOW TO INVOLVE OTHERS IN YOUR RESEARCH
Hopefully most of you will be involved in some aspect of research – or maybe it’s an area which you and colleagues in your department wish to explore. You have probably already considered why you want to involve the public or patients, and who you want to involve.
You now need to consider how these people are going to be involved in the different stages of the research cycle.
Nurses are perfectly positioned to play an important role in the process of involvement. We recognise and value the involvement of patients and the public in research. Nurses have excellent, advanced communication skills which demonstrate a desire to listen, understand and help with any question which may arise during an opportunity to discuss research with patients or the public. This establishes a therapeutic relationship with patients and the public with unconditional positive regard.
Within the context of the multidisciplinary research team, we offer a different perspective, where discussions with colleagues will help to alleviate ‘jargon’ and allow barriers to communication to be reviewed and addressed. Nurses act as the hub of communication, relaying and interpreting information between doctors, patients and carers. This ability provides the best possible outcomes for successful recruitment and involvement in research.
For many, the process will involve organising a meeting, for example, for project advisory groups, public events, reference groups or workshops. How you plan these meetings can make a huge difference to how people feel about the research and how much they are able and want to get involved in your work. Holding a meeting is only one of the ways to involve people, and you may decide that this is not the best approach for your research. There are many other ways of involving patients and the public in research.
WHAT TO CONSIDER WHEN ORGANISING MEETINGS
There are several factors that can aid your meeting’s success.
• Explore opportunities for meeting patients or the public in their own environment, for example by attending a regular meeting of an organisation or group.
• Consider venues that are on neutral ground.
• Organise meetings at times and in places that make it easy for people to attend. Those who are working, have young children or are carers might need to meet outside office hours.
• Make sure that there is parking and public transport nearby.
• It may be better to plan for a mid-morning or early afternoon start to the meeting. This makes it easier for people if they have to travel some distance to attend or if they need additional time in the mornings because of their disability or health condition.
• Make sure meeting places, hotels and facilities are accessible to all those attending; for example, if you are inviting a wheelchair user to join your committee, meet in an accessible meeting room with parking nearby and fully accessible facilities.
• Where possible, visit the venue in person in advance of the meeting, and ask to be shown around to check its suitability and the access to all rooms, such as the dining area and disabled toilets. Don’t rely on the venue telling you that it is accessible, as you might find that this is not the case or that the complex routes of access are not acceptable to the people needing access.
RUNNING THE MEETING
How the meeting is conducted is very important. Agree ground rules for how you will manage the meeting, so everybody has an equal opportunity to contribute. A Chair is necessary to keep balance and control. It is important that all group members, including members of the public, agree to these rules of mutual respect. Make sure that everybody has an equal voice in the group.
It is essential to encourage the use of clear language, and to explain jargon and acronyms. You should ask the Chair to check regularly that people understand the language used and the content of the meeting.
'It is essential to encourage the use of clear language, and to explain jargon and acronyms. You should ask the Chair to check regularly that people understand the language used and the content of the meeting.'
Frequent breaks and refreshments are important, as people might need to take medication or find sitting for long periods difficult. If it is possible to have a spare room, then allocate this as a quiet room for those who might need to take some time out of the meeting.
To allow people the opportunity to contribute in different ways, you might consider different ways of conducting meetings: for example, time in small group sessions, as well as meetings in a larger group. A mentor or buddy system can be useful to support the members of the public you are involving on an ongoing basis.
I hope reading this article will encourage you to involve PPI in your clinical setting, and that you can see how valuable it is to involve nurses, because of our skills related to all aspects of this approach. Our responsibility as nurses to the development and support of research is essential, and we can all make a difference.
ANNE MARLAND
PPI Nurse Representative for the NIHR Metabolic and Endocrine Specialty UK Group; Advanced Nurse Practitioner in Endocrinology, Oxford Centre for Diabetes, Endocrinology and Metabolism, Oxford University Hospitals NHS Foundation Trust (correct at the time of first publication)
