Why do YOU need Patient and Public Involvement (PPI) in research?

PPI is important for three main reasons: 1. To improve the quality of our research 2. To improve the value of our research 3. To increase the impact of our research

PPI can improve the quality and relevance of research. If contributors are involved in prioritisation of topics, it can highlight issues that are important to patients, service users, carers, families using health and social care services, people with lived experience of health, patient advocacy organisations, and members of the public.

It can result in better research studies as PPI representatives bring a different perspective to the study and can help prevent poor research questions by focusing on areas that patients consider to be important.

Even if you are involved in lab based research, having the PPI context can help you to see the wider context of your research, and how it will impact on people in the longer term.

Asking the research questions that patients see as important, and designing and using the methodologies that participants are more likely to engage with, can help reduce research being wasted.

During analysis of data, PPI contributors can highlight the findings that are relevant to the population studied, identify new themes, and help researchers in their interpretation of the findings.

People with real lived experience can help to communicate your work and explain its importance to patient, service user, carer, family, and advocacy groups and organisations.

Knowing that there has been a PPI perspective in the research can make the research more meaningful to those who might benefit.

Lay reviews are an important part of preparing proposals and bids for funding. PPI contributors can play a key role in improving the readability of research proposals and findings and help with sharing the findings with lay audiences.

PPI representatives can inform all parts of the research cycle to help improve the outcomes from the research study and ensure they are relevant to those patients, families, and members of the public who may benefit.

PPI is the right thing to do. A significant amount of health research is publicly funded and therefore researchers should be accountable for their use of that funding.

Public involvement in research means research that is done ‘with’ or ‘by’ the public, not 'to', 'for' or 'about' them. It means that patients or other people with relevant experience contribute to how research is designed, conducted and disseminated.

It does not refer to research participants taking part in a study.

Public involvement is also different from public engagement, which is when information and knowledge about research is shared with the public.

Public Involvement - Health Research Authority (hra.nhs.uk)

Research teams which involve patients and the public run better studies because:

• they are more relevant to participants
• they are designed in a way which is acceptable to participants
• they have participant information which is understandable to participants
• they provide a better experience of research
• they have better communication of results to participants at the end of the study.

Overview of Coproduction as a methodology.

“Co-production is a way of working that involves people who use health and care services, carers and communities in equal partnership; and which engages groups of people at the earliest stages of service design, development and evaluation. (NHS England - NHS England » Co-production)

Co Production brings people with lived experience together with people in research and stakeholder groups.

It generates the knowledge as to how to research for outcomes for the mutual benefit of both the service user and health care practitioners/ researchers.

Historically, certain groups have been excluded from decision making that also effects their lives, and genuine coproduction has a holistic positive impact across all groups involved. When researching co production, they found that they could deliver outcomes that matter to people, it worked more efficiently in the long run and that it empowers individuals with lived experience.

In practice, it promotes inclusivity, transparency of the work and how they do it, embracing change within society, kindness when attempting to build a mutual relationship, and self-reflection to improve the service further. (Coproduction Collective)

Co-production in adult social care and health provision, and the research these require, is about developing more equal partnerships between people with stakeholder interests, appropriate lived experiences and researchers.

The voice of lived experience is central to co-production, because it places lived experience on an equal footing with professional opinion and academic research.

The potential benefits are set out in evidence:

Co-production, through its link with strengths-based practice, and experiential knowledge-based design can have direct positive impacts on the appropriateness and quality of research design and protocol development.

• It may reduce inappropriate and wasteful interventions, since coproduced services will come from the genuine voice of lived experience (Slay & Penny, 2014)
• There may also be wider strengths-oriented benefits – tapping into existing community networks and peer support (Sutton, 2018).
• It promotes equality and diversity in research and services (Begum, 2006; Aabe et al., 2019);
• Enhancing relationships between research institutions, NHS Trusts, practitioners, Third Sector, and people with lived experience (Hannibal & Martikke, 2019).
• It values frontline practitioner (stakeholder) wisdom in research into improvements in service design (Gannon & Lawson, 2008).

While co-production is almost universally acknowledged as ‘a good thing to do’ in theory, this briefing identifies that there is less agreement as to how it can be achieved effectively in practice. It asks researchers in adult health, mental health and social care to accept some need devolve power and accept risk.

Co-production usually needs an investment of time, money, facilitation skills, and long-term commitment. Studies have also found that, sometimes, not everyone’s voice is heard in coproduction (Goulding, 2019).

The ladder of coproduction (created by TLAP - Home - TLAP ) are the steps taken to achieve full coproduction within health and social care. Co-production involves both service users and people who run the service working together and sharing the power to make decisions on effective ways to deliver services by including and respecting all perspectives and skills of both parties. This ensures that a relationship can be built and maintained between service users and people who give the services. The steps taken to reach this are co-designing based on individuals experiences, engagement of the individuals views, consultation, informing people about services and how they work, educating about service design and delivery, and facilitation rather than delivery of services. It operates at many levels such as strategic, service design and development and individual.

In F.H.M. Lancaster University, there are though several examples of successful co-production leading to funded and successful research projects. Therefore, we have experience and understanding, and skills to be able to support researchers. Involving support for your approach to working with lived experiences as early as possible in planning your research around the focus subject or developing research question can make sure that you and your team is well prepared and supported to carry out quality coproduction within your projects’ lives.

A clear way to define co-production is that all involved in services have equal roles in creating and delivering those services, and that obviously includes the research involved in the development, improvement and delivery of services and interventions. It is the most far-reaching way in which people with lived experience are involved in the design and delivery of services and goes beyond feedback and consultation. However, it occurs, co-production dismantles the traditional division between ‘professional’ and ‘person with care and support needs’, and this is seen by those who have benefitted from successful coproduction as a positive contribution to their work as service providers, researchers and stakeholder alike.

1. Recognising people as assets: Treating people as equal and active partners in research and services, not as passive recipients.
2. Building on people’s existing capabilities starting with people’s strengths, rather than their needs.
3. Mutuality and reciprocity; Mutuality is when people do something together; reciprocity is when people are rewarded for their contributions (this doesn’t have to be a financial reward). Taken together, mutuality and reciprocity mean that all involved in co-production are interdependent, and each has a valuable role in improving research, services and outcomes.
4. Strengthening peer support networks: Engaging existing networks to share knowledge and support change.
5. Breaking down barriers Blurring and, ultimately, dissolving distinctions between professionals, researchers, and community members, local people, people with lived experience, or similar.
6. Facilitating rather than delivering Putting emphasis on professionals as catalysts of change rather than as deliverers of services (Slay and Penny, 2014; Stephens et al., 2008; Slay, 2012).

Ref – PPI Guidelines Team Lancaster University and General Field of PPI