By ‘involvement’ we mean research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.  By ‘public’ we mean patients, potential patients, carers and people who use health and social care services and well as people from organisations that represent people who use services.  Source: April 2019 INVOLVE (https://www.invo.org.uk)

Global Health Dialogue promotes public involvement that informs research and evaluation activities and service development and delivery. Promoting the NIHR Values and Principles and Standards for Public Involvement and the recommendations outlined in NIHR’s ‘Going the Extra Mile’ report which set out a vision for public involvement in research.

Patient and public involvement and engagement (PPIE) in research is a relatively recent concept based on the belief that PPI delivers benefits in the design of relevant, participant friendly, ethically sound research. There is also a longstanding moral consideration about involving the public in this way - that of ‘no decision about me without me.’ ((https://en.wikipedia.org/wiki/Nothing_About_Us_Without_Us).

People have a right to be involved in any decision-making process  or research that may affect them.  Over the past few decades public involvement has increasingly been recognised as an essential activity in UK health and social care research. Service recipients, patients and carers offer the voice of experience and a unique perspective that ensures research design is ethically sound, relevant, participant friendly and findings impactful and authentic.

“No matter how complicated the research, or how brilliant the researcher, patients/carers and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost effective.”

Professor Dame Sally Davies, Chief Medical Officer, England, 2009

Both the benefits and the challenges of PPI in research are attracting increasing attention. The goal is to move towards a culture of active PPIE where public involvement to be seen as normal and accepted practice. In the UK, National Institute of Health Research seeks to work in partnership with the public in delivering high quality research in a such a way that by 2025, PPIE is perceived as integral to the research it funds. Technology is increasing the opportunities for sharing experience, promoting knowledge and the value of patient and public involvement in health research.

Experts have knowledge, but patients and their families have experience.

PPIE plays a key part in shaping choices of what research needs to be done, how projects are developed, and how they are carried out. Experts have knowledge, but patients and their families have experience.  Successful research depends on a fruitful combination of the two. PPI works well if its goals are clear, but there has been little formal evaluation of its impact. Indeed there is no consensus on how best to evaluate its impact. A recent Policy Institute report, ‘The nature, scale and beneficiaries of research impact’ - based on an analysis of the 6,679 non-redacted impact case studies that were submitted to the 2014 Research Excellence Framework (REF) found ‘The quantitative evidence supporting claims for impact was diverse and inconsistent, suggesting that the development of robust impact metrics is unlikely.’

Patient Advocates
Patient and public contributors play an important role in improving the services and support patients and the public receive. By creating an independent global platform for the collective voices of patients, their families and healthcare professionals, Global Health Dialogue aims to influence public policy and identify research priorities, topics and actions that improve patient and family experience, Our Dialogue Days offer opportunities for broadening and deepening collaborative relationships and expanding the knowledge base, best practice and new developments.

The patient engagement landscape is evolving from a complex, fragmented and disorganized environment to a structured, replicable and scalable system. Partnership, reciprocity and openness are now fundamental to how research is done and to the successful translation of research results into practice.

PPI in research is now being viewed by funding organisations as an integral part of health research activity, not just in the UK but also in many other countries. Without evidence of public involvement, research is considered flawed and most major funders now require applicants to involve relevant members of the public in their research. In the UK, NIHR seeks to work in partnership with the public in delivering high quality research in a such a way that PPIE is perceived as integral to the research it funds.

Patient and public contributors may receive a ‘token’ attendance fee and have their travel costs refunded but mostly they are volunteers. A major challenge will arise if funders, in their search for proof of impact, place more onerous and greater ‘professional’ demands upon PPI volunteers.

In their review of barriers, drivers and impacts of public involvement in health research generally, Snape et al [19] identified that “appropriate resources were considered essential to effective PPI implementation”.

Good patient and public involvement requires adequate funding and
time and commitment from both researchers and the public.
The quality of PPIE outputs and outcomes differ greatly
as financial budgets are very variable.  

Workforce support
Global Health Dialogue recognises the healthcare workforce everywhere is evidencing extreme stress, which is undermining wellbeing of staff and impacting upon service delivery. Two top causes of sickness days for NHS staff are - mental health and musculoskeletal, MSK pain. The high suicide rate of doctors is deeply concerning. Patients and public understand good patient experience depends upon good staff wellbeing and wish to support initiatives that provide improved support for the health and social care workforce.

Improvement in the quality of health & social care can be achieved by influencing
and prioritising workforce research projects looking to deliver the
Right Workforce in the Right Place at the Right Time.

Global Health Dialogue is supporting various social media activities to provide a platform for exchange and sharing of knowledge, experience and news that will help drive forward greater patient and public involvement and engagement on health topics.