Simon Denegri's Lay review

The public, health research and democracy @SDenegri

Today, the National Institute for Health Research (NIHR), Chief Scientist Scotland, Health and Care Research Wales and the Public Health Agency Northern Ireland, launch UK-wide standards for public involvement in health research. You can find them here:

Building on INVOLVE’s values and principles for public involvement published several years ago, the standards have been developed collaboratively with patients and the public, researchers and others over the last 18 months. The exercise include a public consultation last summer to which almost 700 people responded.

And the work goes on. Today the standards collaboration is also announcing ten ‘test beds’ – organisations who have been successful in their application to try out the standards over the next year:

If you missed out on the chance to apply to be a test bed or were not successful with your application, don’t worry you can still be a ‘freestyler’ – working to the standards and providing feedback as you go along:

The standards will help organisations and the public contributors who work with them, define what good looks like in the context of public involvement in research.

But i think the standards signify something else about the evolution of public involvement in the UK. That we are now influencing a whole health research system – not just single or groups of organisations – to orientate itself around the priorities and interests of patients and carers.

Just take a look at the test beds. They are not what you might have expected. They are not the usual ‘NIHR suspects.’ They include research groups, a research register, universities and Royal Colleges. They cover all four nations. They include basic science and social care research. From maternity care to end-of-life.

Of course, there are great variations in application and practice. Some organisations are so far behind others they look like the dinosaurs of medical research. Nor can we say that public involvement is embedded or fully integrated in everything that happens across health research. Of course not. But these standards are a further milestone towards making that happen.

In time they will give patients, carers, the public, researchers and chief executives a way in which they can feed back, measure what is going on and see how their organisation is performing relative to others. They will provide a tool for reflection and a path for continuous improvement. They will unify us but enable us to celebrate the differences.

They will help us see the wood and the trees.

Note: the standards are being given their first airing in their current form at today’s Patients First conference being hosted in London by AMRC and ABPI.

[My thanks to all those who have contributed to the standards and particularly the steering group who have made it happen]

My blog yesterday, looking at the latest public poll results published by the Health Research Authority (HRA) and the National Institute of Health Research (NIHR) ( looked at the question it raised around diversity and inclusion.

But there are other important findings it is worth reflecting on.

That almost half of survey respondents said they think patients receive better quality care and treatment suggests that on a visceral level people get it – they understand the link between research and what happens to them if and when they become a patient. Hearts move minds and we should take encouragement from this.

But it should be a cause for concern that only 1 in 5 respondents thought that their local NHS provided opportunities to take part in research. 32% did not think opportunities were offered. And almost half simply did not know.

This in spite of the ‘right’ to information about research that’s in the NHS Constitution. Plus many years of local and national campaigning. And the hard fact that all NHS Trusts are now research active.

The work to raise awareness must continue – I have no doubt that a tipping point will come if we sustain such activity. But I suspect the real problem is that doctors are still not making research and the opportunity to take part, a feature of the routine conversation they are having with their patients; in individual consultations as well as general communications about their surgery or clinic.

The National data opt-out programme that rolls out in May may actually offer positive opportunities to talk about health research with people in the context of their care in ways we never expects. But perhaps we should also think carefully about strengthening the rights of patients in the future so that they can be expect to be assessed by their doctor for relevant and appropriate research opportunities. The fact is we also need to be making research part of the conversations people are having at home with family, friends and neighbours. Why can’t health research be a household name?

And finally the call from the public for research to focus on quality of life issues gets ever louder. But contrary to the assumption that this call will drown out the important search for new treatments or basic science, this survey shows that people are evenly split across these priorities; 58% improving quality of services; 56% developing new drugs; 49% prevention; 49% understanding the causes.

Perhaps it is the public who have a better sense of balance than the health research system. If only we were in their homes more we would probably know that.

Simon Denegri Sent from my Work iPhone
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Two blogs in one day. Blimey. I’ll be giving away small packets of face cream or toys with the next issue at this rate.

Someone asked me recently whether co-production was going to be the only thing that mattered in the future. Is all that is currently known as public involvement going to be painted over as co-production ? In the way that Prince re-branded himself as the artist with no name. Would we be saying to friends, family and colleagues in the future ‘I’m pro co-pro, are you?’

Well, no, I am sure you will be pleased to hear.  Truth is that co-production is emerging as an approach that looks to have increasing utility in getting people to work differently in health research. It is another string to our bow. Part of the secret of its future success will be identifying its relevance and appropriateness, the contexts within which it will work best and with the best results.

As already presaged in this blog some time ago, INVOLVE has been working on some co-production principles building on previous work particularly in the social care field. Those principles are now finished and have been published today and you can find them here.

And in short-hand those are principles are as follows, but I won’t spoil it by saying the rest. Read and enjoy.

Key Principles
Sharing of power – the research is jointly owned and people work together to achieve a
joint understanding
Including all perspectives and skills – make sure the research team includes all those
who can make a contribution
Respecting and valuing the knowledge of all those working together on the research
– everyone is of equal importance
Reciprocity – everybody benefits from working together
Building and maintaining relationships – an emphasis on relationships is key to sharing power. There needs to be joint understanding and consensus and clarity over roles and responsibilities. It is also important to value people and unlock their potential.

White, middle-class and well-connected – and that’s just the patients: is this the health research culture we wish to see in the UK?

Ever since it was established in 2011, the Health Research Authority (HRA) – the UK regulator of health research whose mission is ‘to protect and promote the public interest’ – has commissioned a regular survey of the general public’s attitudes towards health research.

Today sees publication of the latest of these surveys, this time jointly with the National Institute for Health Research (NIHR). The survey was conducted in April 2017 by Ipsos MORI summer and consisted of face-to-face interviews with 1014 adults aged 15 and over. The survey findings are the most recent insight into UK public attitudes to be published.

Some clear positives emerge from report which you can find here. Also on the NIHR website here.

Consistent with other surveys (including the last HRA one in 2014)  showing strong public support for health research, 83% of respondents said that health research is very important. 91% of respondents said they would be confident that they would be treated with dignity and respect if asked to take part in a research study, compared to 89% in 2014 and 82% in 2013.

Given the UK’s patchy history of engaging the public in a debate about the issue of personal data. Not to mention the  national data opt-out programme being rolled-out in May. We can take some encouragement from today’s findings which suggest increasing public confidence about how their data is treated. 80% of respondents said they would be confident that their personal data would be held securely if they were asked by their doctor to take part in a health research study in the UK. 26% of respondents said they would not be. In 2014 the respective figures were 72% and 18%.

On some issues, however, opinions seem rooted to the floor. People still have least confidence in health research studies undertaken by the pharmaceutical industry.  But on the other hand, the knowledge that people’s confidence in pharma research grows once they know it works closely with the NHS, may be a foundation for promoting further partnership working which shows a different side to the industry. I am sure this will be an important topic of conversation at the AMRC/ABPI Patients First ‘Pioneering Partnerships’ conference on 20th March.

But perhaps the starkest findings for me are those that shine a light on the differences in attitudes to research across different groups related to ethnicity, social class and working status.

If you are white your expectations of being treated treated with dignity in health research are greater than if you are from an ethnic minority (52% versus 35%). The same is true if you are better off (59% of those in social class AB versus 39% of those in social class DE). And the findings point to a similar picture when it comes to educational level. It is also worth adding that only 26% of respondents from an ethnic minority were very confident about the use of their data compared to 37% of white respondents.

These differences matter. Last year a slate of policy reports was published that highlighted the need for health research to collectively change its ways if it was going to produce knowledge and outcomes that reflect the needs of an increasingly diverse population. This includes breaking down the barriers that make people from these groups less likely to want to be part of research.

But nor are these differences new to us. The ‘Going the Extra Mile’ strategic review of public involvement in the NIHR highlighted diversity as a key issue issue which has resulted in a dedicated work-stream being taken forward by INVOLVE . Look out also for publication of the final PPI standards by the four UK nations on 20th March. However, in other countries the debate about under-representation of certain groups has raged more strongly.  This article is quite a good example of how that public discussion is unfolding in the United States.

But given the highly collaborative health research system we have developed in the UK perhaps we have an opportunity to use this strength to collectively take prolonged and considered action where others might find it more difficult to take a strategic approach. But it will require leadership from the very top as well as action at grassroots level, working with community leaders, voluntary sector groups and others who can build bridges in meaningful ways.


James Joyce once said that opinion polls were like children digging up flowers to see if they were growing or not. But sometimes such polls are important in highlighting issues and pinpointing instances where some re-planting is necessary. In this instance, my sense is that we need to be growing research in the communities and places where under-represented groups in research live and work. Not be expecting them to come to us.

Have a good day.

(tomorrow I’ll be having a quick look at some of the other findings in the survey and what they mean for health research and public involvement).

Last November, on the eve of ‘INVOLVE at 21,’ colleagues from across the world gathered in London to launch an international network for public involvement in research.

If you click on the picture caption below you will be able to read the network’s first bulletin including a report of what happened on the day, interesting results from the first every global survey of public involvement, and details of forthcoming webinars in March and a meeting in  May.

This Saturday 24th February Join Dementia Research (JDR) celebrates its third birthday as a fully functioning service where people can register their interest in participating in dementia research.

I am very proud to have been a small part of the JDR story. I Chaired the Lay Champions Group (see below) at the very beginning of the site’s development and did a few other things along the way. Others have done a whole lot more not least it’s Champions (more of them later). Here are a few public involvement memories, factoids, and current info I thought you might like.

10: Join Dementia Research was formally launched as a service in 2015. But it started life some time before that as a project called RAFT (I am sure it was called other things too). Keeping it afloat was never in doubt! All of the crew survived. Some in better shape than others.

9. From the very beginning and at every step of the way Join Dementia Research has involved people with dementia and carers in its design and development. From governance to the tech stuff, they helped with everything. Therein nailing the myth that some things are just too complex for ‘ordinary’ people to be part of. Here’s a blog from early 2015 in which former carer, Susie Hewer, talks about her involvement. Susie has a great blog of her own by the way called Extremeknittingredhead

8. The very first meeting of the Lay Champions Group took place on 9th October 2012 in Room 7 at Friends Meeting House opposite Euston station. The notes of the first meeting conclude with this bullet point: ‘The Group is very enthusiastic about the Register, and its aims to put the patient more in the ‘driving seat’ for research opportunities.’

7. By my calculation, on average 8 JDR volunteers a day have been signed up to dementia research studies since it began. Here’a a good example of how JDR helps get people into trials faster, easier. I think we can safely say that the expenses and reimbursement we paid the 12 people who attended that first meeting and the others who were involved in the early days has been paid for many times over. If you look at an extract of the priorities and key issues it identified at the beginning, we’ve done pretty well together to keep them in mind and address them well. These are some of the other bullet points from that meeting:

6. The very first people with dementia and carers to be involved in Join Dementia Research were called ‘Lay Champions.’ They didn’t do any laying about, that’s for sure. I seem to remember Sue Boex and Roger Kline (another two Champions) attending a lock-in to work through the details of the site in all its complications. To this day they help to spread the word as well as make Join Dementia Research the best it can be. Perhaps that’s why we now call them Join Dementia Research Champions! Here’s how you can become one.

5. Like a lot of brilliant things in life Join Dementia Research became possible when people started to talk to one another. JDR is brought to you, me, us by a partnership of the NIHR, Alzheimer’s Research UK, Alzheimer’s Society. Alzheimer’s Scotland and people with dementia and carers. The charities don’t just help to promote it they also run helplines for people who have questions about Join Dementia Research. A host of NHS, public and commercial organisations now use JDR.

4: Speaking about the aforementioned Join Dementia Research champions, some of them have become best-selling authors! They were always hot on Communications and helped us come up with the JDR name in January 2014.

3. Join Dementia Research is not just a website you know. Oh no. Oh no, no, no. Recently it has been piloting kiosks in pharmacies where you can sign up while getting your medicines.

2. As at the time of writing, 32,611 volunteers have signed up.

1. It’s open 24/7 and you can sign up here today. Go for it!

Happy Birthday JDR.

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