Introduction to Patient and Public Involvement in research

Involving people in health and social care research in ARC South London – basics Online training: contents (graphics, interactive format, design, ARC South London logo to be added) This is a short online course, aimed at researchers, other people who are part of research teams, including public contributors, and anyone else who is interested in learning more about involving people in health and social care research. What is involvement? The importance of giving people a say in decisions which affect them is increasingly recognised, in England and beyond. What ‘involvement’, ‘engagement’ and ‘participation’ mean can vary. But in health and social care research, there are different meanings, described by the National Institute for Health and Care Research (NIHR). NIHR defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. It is an active partnership between patients, carers and members of the public with researchers that influences and shapes research. The term ‘public’ here includes patients, service users and carers. This is also sometimes referred to as patient and public involvement (PPI). Examples of involvementinclude: For example, pPatients, service users, carers and other members of the public might get involved: • as joint grant holders or co-applicants on a research project • identifying research priorities • as members of a project advisory or steering group • commenting on and developing patient information leaflets • undertaking interviews with research participants. Engagement Engagement is when information and knowledge about research are provided and disseminated, according to the National Institute for Health ResearchNIHR. Examples include: • science festivals open to the public, with debates and discussions • open days at a research centre • raising awareness of research through television programmes, newspapers and social media • dissemination to research participants, colleagues or members of the public of the findings of a study. Participation Participation is where people take part in a research study. Examples include: • people being recruited to a research study (e.g. to test how well a new treatment works) • completing a questionnaire or participating in a focus group as part of a research study. Sometimes involvement, engagement and participation are connected. But people can be engaged or participate in research without being involved in shaping what is studied, how this is done or the way the findings are interpreted and used. Question: which two of these are examples of involvement in research? a) Research staff present their findings on the impact on children of long-term illness, to an audience of schoolteachers and parents. b) Before deciding on priorities for research on food poverty and health, researchers seek, and take account of, the views of organisations taking action to tackle hunger in their communities. c) As part of a study, a researcher interviews mental health service users with heart trouble about their experience of treatment, listening attentively to what they say. d) After comments from stroke patients and carers who belong to an advisory group, researchers revise the design of a study on stroke rehabilitation. (Answer: b and d) Who should be involved? Sometimes the term ‘public involvement’ is used to refer to involvement by patients, service users and carers, as well as the wider public. But people with the health condition or care need, or who use the service, which is being studied have unique knowledge to offer based on their lived experience. So it is especially important to involve them. Sometimes having unpaid carers too, for instance on an advisory group or panel, can be valuable. If the research is about how carers can or do support relatives and friends with health problems or support needs, it is especially important to include carers as well. In research, working with health and social care professionals can be useful too. But it cannot substitute for involving people with lived experience of using a service, having a health condition, requiring social care or regularly supporting a relative or friend in this position. It is important that public contributors are not only invited to share their views but also listened to when they do, though – as with all members of a research team – there may be debate and disagreement on particular suggestions. There is a risk that people with important knowledge drawn from experience might be seen as less ‘objective’ or with less to offer than others doing research, though in reality it is difficult, if not impossible, for anyone to be completely objective. Thinking about differences in power and status, and how to build mutual respect and trust, can help to make sure that involvement is real, rather than token. In mental health and other fields, there are some service user researchers, who combine academic skills with personal experience. Many patients and service users would, under the Equality Act 2010, count as having a disability. Yet even among people with long-term conditions, some may be less likely to be involved than others, especially in sections of the population facing discrimination, poverty or other kinds of disadvantage. For example, people who are Black or from other minority ethnic communities and/or who are on low incomes or homeless are sometimes underrepresented, compared with those who are the focus of the study. Equality, diversity and inclusion are important when involving people, especially if researchers aim to reduce health and care inequalities. These are often linked with inequalities in society. Question: suppose that researchers wish to involve people with lived experience in advising on a research study on supporting mental health service users who want to stop smoking: whom would it be most important to approach? a) Patients of other services who have a lot of experience on committees. b) Mental health service users/survivors who are lifelong non-smokers. c) Mental health service users/survivors from diverse backgrounds who have tried, or are trying, to give up smoking. d) Managers in mental health trusts who are experienced in research. (Answer: c) Valuing involvement People who get involved should have necessary expenses covered, for instance travel costs, as well as having access needs met. This is important if involvement is to be inclusive and diverse. It is also good practice to offer recognition and reward for being involved, usually payment. However some patient, service user, carer and public contributors may choose not to be paid, sometimes because this might affect welfare benefits or taxes. The National Institute for Health Research offers guidance on payments for researchers (https://www.nihr.ac.uk/documents/payment-guidance-for-researchers-and-professionals/27392) and members of the public (https://www.nihr.ac.uk/documents/payment-guidance-for-members-of-the-public-considering-involvement-in-research/27372), while research organisations may have their own payment policies . There are other ways too of showing appreciation to people who are involved and treating them fairly. For example, if a patient and public advisory group has contributed to research which is being described in an article or report, this should be recognised. They may also value learning opportunities. However it is also important to recognise that they have other demands on their time and energy, which may include building flexibility into research timetables. Involvement by public contributors and service user and community groups is important to research and should be valued. Question: which one of these is not a good way to show patients, service users, carers and public members that their involvement is valued? a) Pay their expenses promptly. b) Offer them payment in recognition of their time, knowledge and skills. c) Ask them to be involved in further studies and, if they are reluctant, keep trying to persuade them. d) Thank them for their contribution and acknowledge this in writing. (Answer: c)