Time to Raise the Standard

There is much talk currently about developing standards for involving patients and the public in research. It is timely and necessary. You can get involved by completing the online survey – here.

The key feature of any standard is that it can be measured and checked. It is a mark to compare our efforts with others. It is a badge that can help indicate quality. It is an opportunity for personal, professional and organisational learning.

It is simply so that we can describe, define and learn from the differences between apples and pears.

The International Organisation for Standardisation (ISO) defines standards as...

...specifications, guidelines or characteristics that can be used consistently to ensure that materials, products, processes and services are fit for their purpose.

Bringing real and measurable benefits to almost every sector imaginable, standards underpin the technology that we rely on and ensure the quality that we expect.

This means actual, concrete statements that work in practice. Each capable of being precisely gauged and then graded. Only then, can we compare and contrast and ensure involvement adds value.

One of the challenges we face is whether we are setting standards about the process of involving people or developing ones which will help us measure the value of such participation.

The proposed standards are a great start, a move forward in our thinking but I would suggest that they are more akin to hallmarks of good practice.

My concern is that I have been in meetings that were 'inclusive'. We were all there but the decision had clearly been made earlier. I have 'worked together' but had a sense that I was not an equal partner. I have been well 'supported and learned' much but unsure as to whether it was ever reciprocal.

Such proposals are, I would suggest, more about the process of involving people rather than the purpose of this involvement. 

Sometimes, we need to disagree, to be challenging or even to step apart to have a full blown argument. It cannot always, nor should it, be a cosy relationship. Working together does not necessarily lead to improvements. It is about what we do, when we work together. Inclusiveness in itself will not address health inequalities.

There are many positives in the way this movement has progressed over the years but there are still people who do not accept that we as patients should express an opinion, have a presence or be actively involved.

Our work must be about making a mark. There must be a clear imprint. Without a purpose we will be unable to see an impact. There will be no indentation - our involvement will just have been that - involvement. I despair when I hear some people say that the involvement is the pinnacle.

Our first standards have to be about Purpose and Intent. We have to ensure that our presence (verbal, written and/or in person) is meaningful and leads to change. We need statements like:

•                The aim of the work for health improvement is evident

•                The purpose of the involvement is clear and unambiguous

•                The means of recording, reporting and giving feedback is apparent

Context matters for involvement. Assisting a researcher with their lay summary, membership of a trial steering group and sitting on a funding panel are quite different asks. Equally the research worlds of service delivery, clinical and biomedical sciences have separate needs.

•                An explanation of the context is provided

•                The reasons for this approach to involving people is explained

•                Opportunities to learn from each other are provided

There needs to a section on the Requirements, the realities about the actual task, what is needed, the support, the time and remuneration if appropriate, etc., etc..

•                A role description and task specification is provided

•                Expectations are explicit on both sides

•                A 'plan, do, study, act' approach is adopted

•                Regular reports on progress are collected

I could go on but...I believe that we may need to produce a core set of standards with some separate ones for niche or even strategic roles.

I am not trying to create extra burden with the weight of paperwork but we have to examine more closely what we do and how we do it. We need to apply some rigour, some regular assessments if we are to properly develop our work.

It would be relatively easy to randomly select people and simply ask

⁃               Did you know why this was being done?

⁃               Was it made clear to you?

⁃               Did you know what was expected of you?

⁃               Etc.

These are questions are for all of us. Standards applied that are applicable to the patient and the researchers, the funders.

Well done to those who have started this debate and please contribute to the Consultation. We still have a hill to climb!

You can read in my previous post, Raising the Standard, about how this is put into action by work taking place at Cancer Research UK.

For those of us in the sphere of Patient and Public Involvement my post Is This What Should We all Know has most of the links to key documents.

Raising the Standard

Congratulations to Cancer Research UK (CRUK) - a medical research charity which takes pride in doing things well, with scientific endeavour, clinical precision and an inherent desire to only involve patients and public in a purposeful and meaningful manner. It does not rush headlong with the whims of fashion or the changing mood. The charity rightly takes time to do things appropriately.

CRUK are engaging and empowering patients in a very sensible, robust and systematic manner. I truly admire and respect the way CRUK have found a meaningful, reciprocal connection with the public… especially as I was known to be slightly critical in the past. 

(I should point out that I am a Member of CRUK so may have a slight bias. Yet, a part of that role is to offer independent opinion.)

It is great to see patients, carers, families practically involved with such absolute enthusiasm. I believe it is simply because we see that it is making tangible difference. Equally, there is genuine interest and commitment amongst staff, management and directors. A huge thanks to all involved.

As others attempt to identify and describe standards for how we actively involve and engage the public, CRUK in its wisdom has raised the bar with their very pragmatic professionalism - there is purpose in the journey, a direction of travel, different means of transport with regular postcards (emails and tweets) of the journey. 

It is inspiring, innovative and involved. By ‘involved’ I actually mean complicated so it is great to see how CRUK developed their own toolkits to assist staff, teams and researchers to support these initiatives and the patients who take part. 

I had the pleasure of attending an internal showcase of their work recently. I reckon there must have been about 100 staff came to the event. It was palpable to see the value and the benefit but what makes this shared endeavour so different. It was wonderful to see the patients presenting at each stand. 

So, what are standards that are being set here.

The Grand Challenge

First of all there is a clear and unambiguous INTENT - that purposeful resolve to address an issue for the best possible outcome for patients and the public. 

Just look at the Grand Challenge events. Statements such as We are doing this because… can be weighed against the output and outcome.  

CRUK even have a map

Secondly, each project is set within its CONTEXT - an explicit recognition that purpose, place and people determine the way we engage with each other and that one size does not fit all. Just look at the Cancer Campaigns  Ambassadors input with smoking cessation. Statements such In this situation we need to…can be appraised for relevance and appropriateness 

The third feature is having clear REQUIREMENTS - the unambiguous specifications about what is needed from the task and the people. More importantly a guide as to how they will be achieved. Just look at the use of the Sounding Board or the Prevention Sandpit. 

The detail of each objective: This is what we will be doing and how we will proceed… can be precisely audited against every task. 

Fourthly, there needs to be the constant REVIEW - the on-going monitoring and learning. Just look at the Team, the leadership and the various support tel call, meetings. This How has this been for you and for me…. it is the summing up, the reckoning

NEXT STEPS

Finally, there is the importance of REPORTING - the capturing of the evidence, the celebrating of success and the sharing with others. A report will be published later in the summer with an external event to showcase this work in October 2017. You will have to wait and WATCH THIS SPACE later in year. 

But, you can already read about the IMPACT patient involvement is making here.

SUMMARY

If we are to apply any standards to the way we engage, involve patients then they must also empower people to share a common endeavour. Statements must equally be represented by robust measures that lie within the beguiling simplicity of certain questions…

·               Why should I get involved? 

·               What is the purpose? 

·               Where does this fit? 

·               What needs to be done? 

·               What will I learn? 

·               What difference has it made? 

These initiatives by CRUK translate easily between effective practice and strategic policy, between what is wanted and needed, with patients and staff in common endeavour. 

Tea and biscuits are an essentials. CRUK even supply the mugs...(Sorry, I obviously ate the biscuits) 

If you want to know about the various health policies and practice around patient and public involvement then my previous post 'What Should We all Know' might be on interest

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...

• Find out about current research opportunities - Search at the United Kingdom Clinical Trials Gateway
• Be able to help and get actively involved? - Patients & Public in the work of the NIHR. Also, have a look at the Opportunities at People in Research
• Find out about research has taken place - Great briefings from the NIHR Dissemination Centre
• Discover more about Research - A free online course which runs twice a year
• Contribute questions and ideas for research - for NIHR Evaluations, Trials and Studies
• Extend their skills and knowledge Learn more about ‘involvement’ with NIHR INVOLVE

Policy Context

The National Health Service (NHS) Constitution states:

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.

The Constitution Handbook adds:

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: http://aquas.gencat.cat/en/ambits/recerca-salut/ and have written wisely on Engagement 9their terminology for involvement): http://aquas.gencat.cat/en/ambits/recerca-salut/saris/ 

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)

CHALLENGES

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.