Since at least the 1960s, disabled people, people living with challenging conditions, people living in disadvantaged neighbourhoods and members of groups seen as different, have highlighted that their needs for health and social care services cannot be well understood or evidenced unless they are involved in producing knowledge about the needs of their communities for use in research and for themselves. Involving patients and the public in health and social care research is therefore vital for providing services and research that can be recognised as relevant to and connected with peopleâs lives and wellbeing.
Respecting people as citizens who can play their part fully as members of society is a key moral issue. Denying access to health and social care services and to shaping those services constrains peopleâs ability to act for themselves and for others, and to be treated equitably. It is also now required by law in the UK, in many European countries, and on other continents.
Because peopleâs lives and needs are so different and because we are still finding out about these by working and talking with each other, we cannot know what they are in advance of planning research. Nor can we decide in advance what are the best ways to build such involvement, particularly since being a patient and public involvement (PPI) representative must be a voluntary activity. This means that the most suitable approach is not something we automatically agree on. It is something where we can build on lessons from the different experiences of ourselves and others to date to work together to decide what kinds of voluntary patient and public involvement may be useful to each of us to apply and to develop. We are therefore writing this book, drawing on our different experiences of supporting patient and public involvement in research, as volunteers and researchers, so as to provide some definitions of what it is, reasons why it should be done, how it can be done and what resources can help us to do it well.
A clear and compelling challenge we must address is how to ensure that we comprehensively involve the range of different individuals and groups we need, while they are also acting as volunteers. This means that PPI must be inclusive and be shown to be inclusive. Again, we cannot assume in advance that we know how to work inclusively until researchers and community members are talking, sharing and revising their views.
This book is therefore designed to help readers to find their own way, to make their own decisions about and to take responsibility for identifying what is important and useful for supporting PPI that works for them, in order to produce good evidence for designing health and social care and to guide collaborative and voluntary relationships to achieve this. In this way, you can recognise your responsibilities and means of being responsible for good PPI practice in the research you are contributing to.
It is important to remember that research into health and social care covers a number of very different types of health topics, groups and places, ranging from medicines and hospital treatment to care provision for those living with long-term conditions and the public health of particular communities. Research within each of these areas will need to take account of different cultures and practices of people working in and using them. PPI that can bring useful insights in each case will mean taking additional account of the kinds of PPI needed, the different skills it will call for, and what this will mean for engaging with and supporting PPI.
In this chapter, we start by setting out the basics you should know to get started in supporting or actively developing the involvement of patients and the public in research, whether as a PPI representative, a researcher or a member of a group commissioning research. At the end of this chapter, you should know how to define for yourself what patient and public involvement is, how it is talked about, the reasons for doing it, and what roles it can play in research. This will include appreciating different viewpoints about this role and what means people have to express their viewpoints on becoming involved in research. It will be clear by now that our approach should also equip you to question PPI guidance that seems to assume widespread consensus about the issues involved. If such guidance exists, it is unlikely to have recognised the different experiences and views of groups that need to be involved. Assuming rather than building such consensus can bury diverse points of view or close off ways of expressing them. To work inclusively therefore means that you will need also to take responsibility for being continuously open to the possibility that other peopleâs views and the ways they express them may be different from your own or what you have experienced so far.
We will now look more closely at questions to help us work out key features shaping PPI in our own situation and more widely:
- What are the personal and research reasons for doing PPI?
- What terminologyâwords and their meaningsâcan we agree for PPI?
- Why should we see PPI in research as volunteering?
- Where is PPI being done in research activities?
- How can PPI increase the power of patients and the public to shape research?
1.1 What Are the Personal and Research Reasons for Doing PPI?
Supporting PPI cannot be a tick box exercise existing only as words on paper rather than as shared understandings and actions in practice. We need to identify appropriate reasons for supporting it. We need to understand how to ensure that these reasons are embodied in the activities we personally undertake, and why we want to and should involve people in shaping it. Exercise 1.1 gives you a chance to think about a working example.
Exercise 1.1
You are setting up a new project to find out how to improve community services for disabled people. Why may you want patient and public representatives to be involved in the project?
In carrying out this exercise you may want to think about how disabled people think, and can be thought about, as members of the community in question, and who can bring relevant information to shape and give access to community services that include the groups involved.
Whether PPI happens will depend on the reasons why we think it should be done. There are at least five types of argument for supporting PPI within health and social care research:
- The theory-based (epistemological) argumentâwho can know best?
- The methodological argumentâhow do we gain more accurate and relevant knowledge to achieve better results from research?
- The moral argumentâwhat are the democratic and ethical reasons for doing PPI?
- Funder requirements
- Legal requirementsâwhat do laws tell us our own and othersâ responsibilities are in doing PPI?
The theory-based (epistemological) argumentâwho can know best?
One of the most compelling arguments for involving patients and the public is that they are especially well-placed to develop and share relevant knowledge of what is needed and what does or does not work. This is often based on their experience as service users. Service user is both a descriptive and a political term. Some researchers suggest that only a âsignificant minorityâ would like to be referred to as service users (Simmons et al. 2010). Peter Beresford is a mental health service user and researcher who has tested out and campaigned for these arguments with service users and organisations for many years. He has published âA Short Theory of Knowledge Distance and Experienceâ for the service user organisation âShaping Our Livesâ. Beresford argues that we must value âexperiential knowledgeâ rather than simply dismiss it as ânon-scientificâ, because knowledge created without the insights available from evidence based on experience is fundamentally flawed.
The greater the distance between direct experience and its interpretation, then the more likely resulting knowledge is to be inaccurate, unreliable and distorted. (Beresford 2003: 4)
However, such an argument directly challenges the values of academic scientific methods of evidence-building which mainly prioritise remaining neutral and objective, and keeping a distance between researchers, research and those whose lives may be affected by research findings on a topic. The involvement in research of a person with a close interest in its results may be seen as being likely to lead to biased results, so many academics may resist mixing research to build unbiased evidence and âinterestedâ experience. We will revisit how these issues may be dealt with in supporting and developing PPI, translating them into real-life motives and decision-making in the sections and chapters that follow, including those on research ethics .
The methodological argumentâhow do we gain more accurate knowledge to achieve better results from research?
While we may not agree on whether individual groups will have more or less relevant or unbiased experience to shape knowledge, we may agree that some people will have more accurate and detailed knowledge of living with conditions and support services to help us fine-tune what we already know and to design services that take this into account. Patients can offer insights and stories which are based on their direct experience of a particular condition, and taking these views into account will improve the focus and quality of the research and increase its connections with peopleâs lives. Such connections may be strengthened if some of the evidence is gained through collaborations with peer researchers. The National Institute f...