ABPI

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 note that it is London Fashion Week.  I look forward to finding out what colours are ‘in’ or ‘out,’ what I should or should not be wearing over the next 12 months.

Science is no stranger to fashions or trends.  All of a sudden you can find yourself deluged with reports and the such like about a particular topic.  It’s not always clear why.  Or what might have prompted it.  But there you go.

I suspect we will be talking a lot about stratified medicine this autumn.  Last Thursday the Association of British Pharmaceutical Industries (ABPI) held a roundtable to launch a progress report on its 2009 ‘white paper’ on stratified medicine.  The report is entitled ‘The stratification of disease for personalised medicine.’  It notes the solid progress made in the  UK over the last five years but says we are possibly off the pace if we want to be a world leader. My colleague Louise Leong has written a helpful blog here summarising the report which you can find here.

ABPI is also hosting a follow-up conference on stratified medicine on 20th November with Alastair Kent from the Genetic Alliance UK taking up the patient mantle.

The ABPI notes in passing some of the issues around patient and public information and understanding that need to be addressed. But no more than this.

So, if you want a real insight into the issues for patients and the public, Irecommend you read the new report out today on Innovate UK‘s (formerly known as the Technology Strategy Board (TSB)) website.  It’s called ‘Stratified medicine: a public dialogue.’   And it summarises the public dialogue exercise conducted by OPM earlier this year.

I confess to being a little surprised that I stumbled upon the report today because I was on the Oversight Group and hadn’t received any advance notice that it was coming out.  Maybe I just missed it totally although I don’t think I did.  It seems a little discourteous to myself and other ‘Oversight’ members to say the least.

Regardless of this, it is a shame that such a report is not getting more of a push by those who commissioned it.  This is important stuff.  And some of its messages are important matters of debate even if they might not be that palatable to those who would prefer a smooth scientific consensus to rule the day.

In particular, the OPM dialogue exercise identified challenges in four key areas as follows:

Definition and communication: challenges

— Having a clear, consistent definition of stratified medicine

— Presenting a realistic picture of stratified medicine, its pros and cons

— Continuing to engage the public and patients

Implications for patients and care: challenges

— Support patients to make sound treatment decisions

— Support patients for whom there is no current treatment

— Provide the right facilities and training to healthcare professionals

Social issues and consequences: challenges

— Understand and mitigate any implications for equality

— Define the role of the private sector in developing stratified medicine

— Develop understanding of the costs/benefits of stratified medicine

Research, testing and data sharing: challenges

— Give research participants a choice about how and who uses their data

— Reconcile the role and perception of the medical research industry

— Engage the public in regulation on data sharing

That last section will be of interest to those people who have followed the debate around sharing of personal data.* What it says is that the public want to be part of research that reflects their needs and interests. But trust is not at the levels it should be to make them feel confident and comfortable when it comes sharing data.  Especially when they see this data being shared with the private sector.  That’s the task ahead of us all – to build this level of trust.

I rather liked the comment in the report from a participant in the dialogue exercise: that the story of stratified medicine needs to be told from the point of view of the person in the clinic and their health professional.  Not from the point of view of a Minister or the organisations it might benefit.

Perhaps the rubicon yet to be crossed is that the proponents of stratified medicine continue to parade its wears on the catwalk and have yet to appreciate that, for the rest of us, it’s a question of what it will look like ‘off-the-rack.’