Monday 10 April 2017

Is this what we should all know for Patient, Public Involvement in Research?

Is this the information all leaders who are engaging, involving and working with patients and the public should consider, know, be able to describe and share with others? (Revised May19 - First posted in Nov 2016)

(The term ‘leaders’ is used here for all those who have a specific role or position and equally, 
includes patients / service users who advocate on the public having a greater say in research)

  • Knowing how to drive forward and advocate for the experience, voice and presence of patients, carers and the public to make a real difference to research in the NHS for improved health and wellbeing.
  • Understanding and describing the difference that the process of actively involving individuals, groups and communities have in the work you are leading.
  • Defining and sharing with others the impact of work with research.

There are certain key matters that we all need to know. 

First and foremost, for me, is Maintaining a healthy lifestyle - through exercise and a healthy diet. We all need to use research for our own health and wellbeing.

The real question is how do we help others...

Take Part in Research
Get Involved
Use Research

Learn about Health Research

Add a Question

Get help

Click on the caption or you can also use these links...

Policy Context

The NHS is there to improve our health and wellbeing, supporting us to keep mentally and physically well, to get better when we are ill and, when we cannot fully recover, to stay as well as we can to the end of our lives. It works at the limits of science – bringing the highest levels of human knowledge and skill to save lives and improve health. It touches our lives at times of basic human need, when care and compassion are what matter most.

The NHS is founded on a common set of principles and values that bind together the communities and people it serves – patients and public – and the staff who work for it.

Research is a core part of the NHS. Research enables the NHS to improve the current and future health of the people it serves.  The NHS will do all it can to ensure that patients, from every part of England, are made aware of research that is of particular relevance to them.  

NHS England published their Research Plan in April 2017. They will support the NHS by working with partners to define what research is needed to address future needs and why. We will co design a new systematic means of better articulating the research needs of local NHS systems to NIHR, AHSNs and other research funders including charities.

The Academy of Medical Sciences explores the relevance of research in this report for the Health of the Public in 2040. The Academy also looks at Enhancing the Use of Scientific Evidence and created a microsite How can we all best use scientific evidence. A further consideration is the Accelerated Access Report and the digital drive in line with the Information and Technology for Better Care Strategy. in November 2018, the Academy published an interesting report on the use of Patient Data.

The Association of Medical Research Charities has recently produced a a report Making a difference: Impact 2017. In 2018 the AMRC also produced a useful graphic of the work of charities.

The King’s Fund regularly has a reading list on Public Involvement in Health Services. It can be found here as well as providing a valuable insight into a Digital NHS.

National Voices recently produced a number of I Statements about Research and Innovation

Patients and the Public with Research

There are a number of valid reasons for involving the patients, carers and the public in research. These range from greater accountability, increased openness to simple and effective practical improvements.

The NIHR in England - The Going the Extra Mile report provides the strategic vision and direction for our work in engaging and actively involving patients, carers and the public in all aspects of research. It sets goals for the citizen
By 2025 we expect all people using health and social care, and increasing numbers of the public, to be aware of and choosing to contribute to research by:
  • Identifying future research priorities and research questions
  • Informing the design and development of innovations
  • Participating in research studies
  • Advocating for the adoption and implementation of research in the NHS
This contribution to research and a healthier nation will be openly acknowledged and recognised in the same way that other activities including volunteering are a celebrated part of civic society.
A core recommendation is about co-production so you may on find this a useful general guide to the principles and practice of co-production.

As a leader you should ensure that you contribute to NIHR INVOLVE and ensure that information held on their website about where you work is accurate. Equally, there is a greater synergy with Public Engagement and this report on Social change and public engagement with policy and evidence offers helpful guidance.

You can read about how INVOLVE are currently focussing on Learning & Development, Diversity & Inclusion and Co-production as well as Standards for Involvement by clicking the link. Please contribute to the TEST BEDS on standards.

Most recently, INVOLVE have produced some good principles on co-production in research

Simon Denegri’s - Lay Review is a good source of current issues and announcements. You may want to follow Simon on Twitter @Sdenegri

In all of this activity there is always the present danger that involvement remains "dominated by a culture that is white, upper-middle class and male". Follow @PeepsKnow and learn much from their excellent 'People’s Knowledge and Participatory Action Research. Escaping the White-Walled Labyrinth'. It is incumbent on all of us to listen and be advocates for equality and to challenge discrimination in every form.

Research Guidance and Ethics - The NHS Health Research Authority (HRA) protects and promotes the interests of patients and the public in health and social care research. It works to make the UK a great place to do research where more people have the opportunity to participate in health and social care research and continue to feel safe when they do. The HRA has a specific set of pages on its website for Patients and the Public about taking part and getting actively involved. It also makes the purpose of involvement clear and provides guidance through the application system.  

Payments, honoraria and expenses - This useful article was brought to my attention about involving people who are in receipt of benefits. It is from SCIE.

World Context - The UK may be seen as a ‘world leader’ in this area yet we do need to consider what is happening elsewhere by exploring, for example: the European Patients‘ Academy on Therapeutic Innovation (EUPATI), the Irish Platform for Patient Organisations, Science and industry (IPPOSI). 

Further afield there is the Canadian Institutes for Health Research and their Strategy for Patient Orientated Research.You may also choose to look at the developments of Involving People in Research in Western Australia and the Patient Centred Outcomes Research Institute (PCORI) in the USA. In Catalonia, AQUAS, the equivalent of NIHR has a website in English is: and have written wisely on Engagement 9their terminology for involvement): 

These cover many of the leading economies yet we risk deepening the health inequalities unless we also look at what is happening in their countries. I am extremely grateful to @BellaStarling for drawing my attention to her exceptional blog post Science Engagement - going global. It is illuminating and challenges all of us.

The Third Sector - There are many charities who focus on health research and others who carry out research. Many are now actively involving patients and the public in the research that they fund. This ranges from priority setting, improving study design and sitting on funding decision making panels.

The Shared Learning Group on Involvement brings together a number of people working in charities doing patient, public involvement and engagement. They also have a ‘research sub-group’. Parkinson's recently produced an excellent guide for their researchers on patient and public involvement. The Association of Medical Research Charities (AMRC) is a further good source of information.  

Universities - There is a significant amount of public involvement taking place across all academic institutions. This is partly driven by the Research Excellence Framework which requires research work to have ‘reach’ and ‘significance’. It is worth finding out about the Academic Health Sciences Network (AHSN) and the local Collaborations for Leadership in Applied Health Research and Care (CLAHRC)


But how far have we go? A couple of recent articles that provided useful reflections on how involving patients and the public in health and care research that are worth a read.

Public Participation in Health and Social Care: Exploring the Co-production of Knowledge from Peter Beresford at Essex 

Patient and public involvement in NIHR research 2006-2019: policy intentions, progress and themes from the Oxford BRC by Trish Greenhalgh - sent by Mark Taylor

Please Note: I am grateful to those who have suggested other sources and would really welcome any recommendations which will be acknowledged. This is intended as a living document which @BellaStarling has shown.

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