A dear schoolfriend of mine, Sara, will be laid to rest today.

We found each other on Facebook three years ago after a 30 year hiatus. I enjoyed our mutual ‘likes’ of one another’s quirky musings, the various photographs of holidays and birthdays, and the occasional sharing of news about our respective families.  I had forgotten how funny she was. Our re-connection was a small happening. But it was one that brought great pleasure to me.

So I was touched that Sara’s husband included me in a message to friends and family describing her last days with her family. It was beautifully written. Warm, loving, peaceful. It sounded as though the hospice that Sara was cared in had been wonderful with both her and her family.

Naturally, I have thought about this a fair bit in the last ten days. These things do make you contemplative. Just for a while it feels as though the moorings that tie you to the shore have become a little bit looser. Plus there is much political debate about death and dying at the moment isn’t there?

If truth be told I don’t feel ready to step into that arena. Not today anyway. But I do believe in choice. That the respect and recognition of what might seem to you and I small things has great significance. And I know that many people are denied these life-affirming choices in their final months and weeks. Choices that would make life more comfortable for them and less distressing for their loved-ones. This is one of the many reports written on the matter by the excellent Marie Cure charity which is trying to change things in the favour of people with a terminal illness.

More research is desperately needed and I thought that you may be interested to read the results of this National Institute for Health Research (NIHR) study which came out today. It shows people in the North get the least amount of end-of-life hospice care (35 days) compared to people in the South (55 days).  The principal reason would seem to be that people are referred too late by GPs and other health professionals. Here’s the BBC report on the study.  And if you want to follow progress with another NIHR funded study in the field then please do follow the Optimum Hospice at Home project on Twitter at #opelstudy.

Elsewhere I am delighted that the Academy of Medical Sciences is tentatively turning its mind to the subject of dying.  It has announced that it will be running a public engagement project this year which will allow people to explore their attitudes to death and dying. It’s only just got started so if you want to know more or feel you have something to contribute, here’s a news piece about it with the Academy’s contact details. 

This morning I wondered whether it was appropriate or not for me to write a blog based around Sara’s untimely death. But then I remembered something she wrote on Facebook a little while ago. She wrote ‘I seem to remember you always were a bit of a firebrand.’ And I can see her now, as a young girl, raising her eyebrows and smiling as she said it. She would have expected no less of me.

I know, me(!), a firebrand. Would you believe it?

Farewell Sara.

It doesn’t matter where you are in the world patients and carers have the same questions about research.

This week I am in Sydney, Australia, at the invitation of the Australia Dementia Forum hosted by the National Institute for Dementia Research.  It has been a fascinating two days. Most of all I have enjoyed meeting consumers (as they tend to be called here) – people with dementia and carers – and hearing their voices throughout the conference proceedings.

Yesterday I sat on a panel answering audience questions about the translation of research into practice. It’s a big issue in research generally. It’s a bugbear for patients, and carers – taxpayers – wherever I go. ‘Why don’t you do more to make sure that research findings are implemented and adopted?’ they ask. And well they might.

It just so happens that the National Institute for Health Research (NIHR) has announced an open competition to run what are being called ‘Applied Research Collaborations’ (NIHR ARCs) ‘for applied health and care research and to support implementation of research into practice, making tangible improvements for patients, the public and to health and care services.’ 

ARCs will follow on from where the current Collaborations for Applied Health Research and Care (CLAHRCs) leave off towards the end of 2019. They are good news from a public perspective ensuring a continued focus on implementation.

As I have  written before on this blog I have always been a big fan of the CLAHRCs and of the public involvement teams and communities that have coalesced around them. The public involvement work they have done since their inception as pilot organisations in 2008 has been of national if not international standing. Some of the innovations that have come out of them are exemplars of public involvement generally.

So I am delighted that the NIHR commitment to ARCs meants continuity of focus on the important theme of implementation. But what I am most pleased about is that the specification for the new the ARCs also embraces  the learning and priorities for patient and public involvement to emerge from the CLAHRC experience, the ‘Going the Extra Mile’ strategic review and NIHR wider strategy refresh. An increased focus on: diversity and inclusion; community-led research and new methods. As well as aligning things with the new PPI standards.

The following Q&A from the official documentation highlights the key differences between ARCs and CLAHRCs in terms of public involvement:

………The requirement to provide a strategy for public involvement,
engagement and participation remains unchanged from the NIHR
CLAHRC and other NIHR infrastructure schemes.

What’s different?
For NIHR ARCs, there is a greater emphasis on ‘community’ to ensure
that their plans reflect the diversity of the local population, foster
community-led approaches to research, as well as developing new
methods and approaches to public and community involvement,
engagement and participation. NIHR ARCs will also be expected to
consider the six national standards for public involvement in research,
which were published in 2018…….


These are important strategic signals which the public involvement community needs to embrace as opportunities to take things to a new level; as a chance to bring new thinking and approaches to bear upon some perennial issues.


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).

The National Institute for Health Research (NIHR) together with its equivalents across the other UK nations – the Chief Scientist’s Office in Scotland, Health and Care Research Wales, and Public Health Agency Northern Ireland – has been leading the development of UK national standards to improve the quality and consistency of public involvement.

The UK–wide partnership has its own dedicated website here where you can find out more about the development of the standards over the last 18 months.  Last summer there was a highly successful consultation on a first iteration of the standards which got 680 responses.  The results of this consultation were shared at the ‘INVOLVE at 21’ conference where delegates had a further opportunity to critique, shape and strengthen the proposed standards.

With the next version of the standards expected in March – around about the time that the ABPI/AMRC are hosting their ‘Patients First: Pioneering Partnerships’ conference (see workshop) – the partnership are now looking for people, groups, teams and organisations to run test bed projects from April 2018 until 2019.

The test bed projects will be putting the standards into practice in their own working environment and sharing their learning with others. Both the fellow test beds but also the wider community.

If you are interested in being a standard bearer and running one of these test bed projects you can find out more details here (the information sheet also includes contact addresses). And the expression of interest form can be found here.

The deadline for expressions of interest is Wednesday 14th February 2018 – Valentine’s Day!




One of the unintended consequences of writing a blog is that it can be a helpful chronicle enabling you to trace the history of issues and events over many years. There is no better example than mental health research.

So I can tell you that it is three years since the Mental Health Research Alliance was formed (World Mental Health  Day, 2014).  Eight years since the Research Mental Health declaration (October 2009) when service users and mental health organisations first flexed their muscle on the issue of mental health research funding and support with one voice.  My abiding memory of the declaration is of Ruby Wax, comedian and mental health campaigner,  telling a reception at No.10 Downing Street that what came out of research – treatments, therapy, interventions – was the only sure-fire way of removing stigma.

A lot has happened in the meantime.  Whereas before we had no national charity focused solely on mental health research, now we have two – the ever innovative ‘McPin Foundation’ (2012) ‘ although its origins go back to 2007, ‘MQ Transforming Mental Health Research’ (December 2012) . We have also seen a series of James Lind Alliance Priority Setting Partnerships on depression (January 2016), bipolar disorder (August 2016) and, currently, children and young people’s mental health (2017) to name but a few.  In general it has risen up the health research agenda and was a significant theme in September’s ‘Future of Health’ report commissioned from RAND Corp by the National Institute for Health Research (NIHR).

The policy context to these developments is also important. Not least the publication of the Five Year Forward View for Mental Health in 2016   It is in response to a specific recommendation in the ‘Forward View’ that we have the latest development in this chronicle – yesterday’s ‘Framework for Mental Health Research’ (‘Framework’ is the in-word these days isn’t it?) published by the Department of Health but authored by a steering group representing the collective view of service users, voluntary organisations, funders and researchers of what needs to happen in mental health research.

That the service user voice has been involved in the development of the ‘Framework’ is clear from the ten recommendations in the document including this specific recommendation on involvement:

Recommendation 2: Patient and public involvement (PPI) (Stakeholders: Research funders, HRA, INVOLVE, Universities, Charities.
Patient and public involvement in mental health research should continue to be strengthened and systematically embedded throughout research regulation, ethics
and governance, shaping and determining research questions, assessment of research
proposals and research evaluation. User-led research as an emerging discipline,
generating new knowledge and investigating things that matter on a day to day basis to
people experiencing mental health problems, should continue to be strengthened. So too
should co-production in research, combining expertise of practitioners, healthcare
commissioners, service users, carers, policy makers and researchers together within multidisciplinary research teams. There is a need to make involvement more representative particularly by increasing inclusion of children and young people
and people with protected characteristics. Involvement in basic research should
be strengthened and requirements for involvement harmonised across research.


The nods towards user-led research, co-production and young people are important statements, setting expectations to which the mental health research community will be held to account over the coming weeks. But, as important, are statements in other recommendations that recognise the importance of building public involvement capacity and capability in the research system – people, knowledge, relationships and places where the work can take place.

There is less said in the document about implementation. But, alongside yesterday’s  announcement of the ‘Framework,’ the NIHR also launched new mental health research funding opportunities for 2018 with a particular focus on ‘the promotion of good mental health and the prevention or treatment of mental ill health. Issues of particular interest include proposals that utilise new digital health technologies or investigate their effects.’   It will be important that all partners – and others as well – follow through on the recommendations with co-ordinated actions and activities.

My chronicle here only serves to demonstrate that policy takes time (frustratingly) to evolve. That its progress can be idiosyncratic, stop-start in nature, and sometimes requires two or three goes at the same idea before it takes off. But it is the overall trajectory that matters most, whether one can answer positively the question: ‘are we heading in the right direction?’

Coming on the back of the recent announcement regarding a new mental health research policy unit it does feel to me that with this ‘Framework’ we are entering a much more positive era for mental health research; founded on collaboration and with a clear place at the table for public involvement. It is crucial that we keep this momentum going.




How many of you have arrived at a meeting, gasping for a cup of tea, and been presented with a scene not unlike the one in the photo below?

Coffee pots

An array of coffee pots.  All looking the same. But each holding something different. Coffee, decaffeinated coffee, hot water, tea (possibly). That’s before we even get to the white stuff. Milk, cream, semi–skimmed, soya, half-and-half. And so it goes on.

Yes, I know they are sometimes labelled. But not always. Many times the writing has been worn off. So there!

If you’re like me, you often arrive at events a bit harried and with the spatial awareness of someone coming out of an operation. So you plump for coffee, promptly pick the wrong pot and pour hot water into a cup. What to do? Hide the cup somewhere where no one will see it. Drink it – yuk! Or make the best of a bad situation and make a cup of tea which you didn’t really want. Now, where’s the English Breakfast tea bag among all those hippie herbal ones?

I suspect organisations, their staff and the patients, carers and the public can feel like this when confronted with public involvement. Where do we start? How should we do it? What does good look like? How do we know if we are doing well? Who says? What do we do if pour from the wrong PPI font of knowledge? Is there hope?

This very real challenge was recognised in the ‘Going the Extra Mile’ report and recommendations which was published following NIHR’s Strategic Review of public involvement in research.  Recommendation 2 said:

‘The NIHR should commission the development of a set of values, principles and standards for public involvement. These must be co-produced with the public and other partners. They should be framed in such a way, and with a clear set of self-assessment criteria, so that organisations across the NIHR see their adoption as integral to their continuous improvement in public involvement. The achievements of the public, staff and researchers in promoting and advancing public involvement should be celebrated and acknowledged by the NIHR.’

Now, the NIHR and it’s colleagues in the other nations of the UK ( a significant achievement in itself)  – the Public Health Agency in Northern Ireland, the Chief Scientist Office in Scotland, and Health and Care Research Wales – have launched a set of draft standards for public involvement for consultation.  The draft standards which have been developed from INVOLVE’s values and principles work a few years ago are as follows:

1.Inclusive opportunities – We provide clear, meaningful and accessible opportunities for involvement, for a wide range of people across all research.

2.Working together – We create and sustain respectful relationships, policies, practices and environments for effective working in research.

3.Support & learning – We ensure public involvement is undertaken with confidence and competence by everyone.

4.Communications – We provide clear and regular communications as part of all involvement plans and activities

5.Impact – We assess report and act on the impact of involving the public in research.

6.Governance – We ensure the community of interest voices are heard, valued, and included in decision making.

Now it’s your chance to shape and influence these standards and the indicators of good practice for each which have been developed by NIHR staff, researchers and public contributors over the last year and about which I have written before.

The excellent consultation web page has more details and resources explaining the draft standards, the indicators of good practice as well as information on how they were developed. It also provides slides and tools if you are planning to hold your own consultation event – I hope you do, it might be fun. There’s also a downloadable copy of the consultation questionnaire; if you want to go straight to the online survey you can do so here.  And the Welsh language version is here.

As the Academy of Medical Sciences recent said in its report on society and evidence, it’s time for health research organisations to wake up and smell the coffee when it comes to public involvement.

So this is an incredibly important milestone in the development of public involvement by the Government health research agencies across the UK. The standards will help all organisations to develop and embed public involvement, adopt good practice and measure progress in a constructive way.

The consultation ends on 1 September 2017 and there will be news on the next stage of their development at the INVOLVE conference on 28th November.

Over to you.

Have a good weekend.