AMRC

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!

 

 

 

It’s high time we got over it.

Pretending it doesn’t go on is foolish.

Suspecting the worst every time they come near to one another is energy-sapping.

No one is trying to deny history. But we are in danger of denying others a future if we continue to stand in their way.

I mean, of course, charities and pharmaceutical companies working together.

This is one of those issues that provokes the strongest of reactions from people.  I completely understand why but a dogmatic rejection of the idea seems profoundly wrong.  We have to find ways to enable these sectors to build bridges and work together in ways that the public can trust and feel confident in.  Their joint-working will not only lead to better medicines but also better behaviour by companies and charities.

Today National Voices, a membership organisation of charities working for a stronger patient voice in health and social care, and the Association of the British Pharmaceutical Industry (ABPI), have published a new guide to support charities and companies to forge collaborations in a transparent and effective way.

It sets out four principles on which these partnerships should be based: clarity of purpose; integrity; transparency and independence.  It also goes one step further than work by organisations such as the Association of Medical Research Charities (AMRC) in providing practical advice and support that will help charity and pharma staff think through the practicalities and governance of making such partnerships work.  In my experience it is often fuzziness and fumbling over the latter that causes most problems to staff but also in how things are handled in the public domain.

The guidance comes with an exceptionally strong provenance in terms of its methodology and who was on the Steering Group.  Not least the Group’s Chair, Harry Cayton, who is Chief Executive of the Professional Standards Authority and who says in a guest blog on the ABPI website today:

‘Previous guidance and direction does exist in this area, but there is nothing which covers the full range of issues, addresses charities and industry together, or fully promotes mutual understanding. We feel this is a valuable contribution to an issue that should ultimately lead to genuine benefits for patients. It is now up to companies and charities entering into collaborations to ensure that these outcomes are delivered.’

I commend it to you all.

 

Yes, wouldn’t it be great if the BBC did indeed launch ‘Science in Need?’ Then, for the first time in history, we could have a public broadcaster encouraging us to ‘SIN’ and be SINNERS with our donation to science.

There is something rather beautiful but perhaps also tendentious about the juxtaposition of yesterday’s launch of the BBC’s new strategy including its plans for science (http://www.bbc.co.uk/news/entertainment-arts-34168310); and the call by almost 200 science leaders in a letter to The Financial Times for Government to back British science strongly in the on-going Comprehensive Spending Review (CSR).  Both carry essentially the same message that ‘science is in need.’  Yet one wonders whether Brian Cox’s by-all-accounts excellent speech at the Science Museum as part of the BBC’s launch might have been the right speech in the wrong place. For I am not sure the BBC needs to give the Government any more excuses for thinking it has a political agenda.

What of the BBC’s new pitch on science? Well, what’s not to like about the most esteemed public broadcaster in the world making science such a big part of its future plans (Future of the BBC 2015)? I think it’s great. But… Yes, you knew there was a ‘but’ coming didn’t you?  Fact is, it is good.  But it also grates in parts.

Perhaps it is the cringe-worthy and religious-sounding title for the science bit (Section 6.4) of the strategy: ‘A New Age of Wonder’ invoking us to bow at the altar of science as in a medieval painting.  Or maybe it is the list of hallowed science organisations with which the BBC says is going to link up with to embark on the biggest public engagement campaign in science in history? There are many other organisations – local and national – that need to be part of this partnership if it’s to reflect the national science enterprise that it avows to campaign for.  Not just the ‘great and the good’ of the science institutions.

And a campaign? Does this mean we can expect Soviet-style, four-legs good two legs bad programming? Have we ditched impartiality and putting science under the same scrutiny as every other sector in life’s? Seems a bit dodgy to me to position the BBC as something akin to a propaganda machine. Celebrate, absolutely, but let’s not forget there’s a lot to debate, to question, to challenge about science as well.  As ever, the danger with the approach implied in the BBC’s report is that the  desire to influence and persuade becomes more important than the quality of the dialogue and engagement.

True there is a welcome reference to citizen science. But it could have done with an illustration or two of how it will tap into this movement if it wanted to be more convincing. I, for one, would love to see the BBC empower citizens with its science coverage. Just as it has young writers with its wonderful annual story-writing competition that features on Chris Evans’ Radio 2 Breakfast Show.  This sort of populist but life-enforcing approach must sit alongside that of the other roles the BBC should play.

What did the founder of the BBC, Lord Reith, say: ‘inform, educate, entertain.’

How about ’empower’ as well?

I hope you will have seen or heard the news today of the positive results of a gene therapy trial for people with cystic fibrosis. And this is how The Guardian is reporting it.

Although it is early days and the improvement shown in patients only a modest one, it is nonetheless a very hopeful sign of how this approach may help people in the future.

I have no direct experience of the disease, but one of the most affecting and poignant patient stories I have witnessed was by a young woman with cf at an event at the political party conferences many years ago.  It has stayed with me ever since.  It has caused me to have a particular emotional interest – if I may call it that – in the condition.

The trial was conducted by the Cystic Fibrosis Gene Therapy Consortium which brings together scientists in the Universities of Oxford and Edinburgh with Imperial College, London.  They were formed in 2001 at the initiative and with the support of the Cystic Fibrosis Trust (CF Trust). The Trust has invested £40 million in the consortium since then and continues to do so (it announced a further £500,ooo funding just earlier this year).  But the funding environment for these sorts of projects is never easy and a few years ago the Consortium formed ‘Just Gene Therapy’ to bolster existing funding from the National Institute for Health Research (NIHR), Medical Research Council (MRC) and others.

So, the back-story of this important news today is one about the length of time it takes to do this sort of work, the importance of collaboration and the pioneering role that medical research charities have in supporting ground-breaking science.

But, above all, it is a testament to the cf community’s as a whole.  Their positive, persistent and patient backing and support through their donations.  The patients who took part in the trial, some as young as 12.  Without them, we wouldn’t be hearing this news today.

I spent yesterday morning at an excellent event looking at the James Lind Alliance Priority Setting Partnerships (JLA PSPs for short!). #JLAevaluation

Started in 2004, JLA PSPs have become a recognised and highly respected method for identifying shared priorities in health research among patients, carers and clinicians.  That they have is a testament to its founders but also the excellent JLA advisers and National Institute for Health Research (NIHR) support staff now working on them.

They are one of the success stories of UK public  involvement.  31 ‘official’ PSPs have been completed over the last ten years or so. 23 are underway. A further 86 wait in the wings for possible adoption. More than 26,000 respondents have been involved and over 350 treatment uncertainties identified in diseases covering the human body from head to toe.

Only this week, the National Institute for Health Research (NIHR) and British Society of Gastroenterology launched a PSP in alcohol-related liver disease.

Priority Setting Partnerships have undoubtedly contributed to the increasing cultural sensitivity across the UK health research system that it should be funding work of ‘relevance’ to patients and carers.  They are also becoming influential way beyond these shores. A colleague from Canada wrote to me this week to say that the Canadian Alzheimer’s Society is about to start a PSP. Others have taken place in Australia, Denmark, Sweden, Spain and the Netherlands.   They have entered the lexicon if not the rule book of public involvement across the globe.

But there’s no resting on its laurels. Yesterday’s meeting was about what comes next for PSPs.  Also on what needs to be done with regard to the wider challenge of identifying research priorities in any health research system. In my view there are a number of tasks ahead:

– As I said yesterday, collectively and individually PSPs are facing their ‘Strictly Come Dancing’ moment. In each disease area the resulting top ten treatment uncertainties or priorities take to the dance floor for potential funding by researchers and their institutions. Only the judges are predominantly scientists. No wonder few of them are left in the competition at the end. We need to work with funders and others to ensure that these patient-driven priorities are picked up.  That should not be the responsibility of JLA PSPs but it’s many partners and colleagues working across health research.

– We heard an excellent example yesterday from a team in Australia who had tried to do ‘JLA in a day.’ There have long been thoughts about developing a ‘JLA Lite’ version. I understand the concern of the methodologists and they are right to urge caution. But if JLA PSPs are now the skyscrapers of priority setting, we must also recognise the need for a village hall option.  My observation would be that JLA PSPs do not tend to close off the debate about priorities.  Rather they set the agenda for a more informed debate.  Smaller, more localised exercised that follow-up or are a presage to this work may have a place.

– Which leads me onto another possible innovation. PSPs have almost exclusively been concerned with specific conditions or diseases. But could we do this with local communities or neighbourhoods? To identify public health concerns for instance?  Similarly I would be interested in a focus on care and services and not only treatment.

– From an NIHR point of view we should ensure reviewers are aware of PSPs relevant to the programme or scheme to which they are applying. Applicants should be guided to explain in their application how their proposal will address them. And if not why not. For there may be good reasons.

– Finally, when I replied to my Canadian friend I said that I thought that a PSP was the single most important strategic intervention in research that disease specific charities and patient groups could make in research.  Working with patients, carers and professionals they would not just be informing their own funding strategy, but the whole field of science relevant to the disease area as well.  It would be good to see the Association of Medical Research Charities (AMRC) make this a recommended action of charities when – for instance – they are developing their research strategy which is an AMRC membership requirement.

Capacity, capability and quality will be issues that need further attention in the coming months and years.  It is great that JLA PSPs are homed in NIHR’s NETSCC organisation.  But they need to be part of the mainstream in how we think about the value of research.  In the same way that we now do about systematic reviews.  As I hope my thoughts about the future make clear, achieving this will be as much down to research funders, patient groups and other partners as to our excellent JLA colleagues.

It’s all about relevance.