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Macmillan Cancer Support has today drawn attention to the negative impact of ‘fighting talk’ on people living with cancer.

The charity says the findings of its latest survey show that people find it more difficult to talk honestly about their experiences because of the pressure they feel to be positive. One in four people said that they feel guilty if they don’t stay positive about their disease. The problem is that this can get in the way of them having conversations with relatives and health professionals about their end-of-life preferences.

Macmillan’s survey and report is long overdue .  For as long as I can remember, patients and families – coping with all manner of diseases and conditions not just cancer – have expressed disquiet about the language – and let’s be frank it’s often the language of war – ‘fight,’ ‘battle,’ etc. etc. – that is used and how it makes them feel and behave. I suspect it also causes friends and family to say and do things which feel equally unauthentic.

Similarly society has become dominated by messages about health care and medical research that continue to emphasise ‘cure’ over ‘care.’  Quantity versus quality of life is still the premium product if we are to believe the advertisers and fundraisers.  If you don’t believe me you may wish to check out these charity slogans I collected some time ago.

While I understand the imperatives behind this, the growing gap between people’s lived experience and the experience they are being told they should have is a cause for concern.  Perhaps it is what motivated the graffiti artist in Bromley who I noticed a few months ago had angrily scrawled ‘It’s all lies’ across just such a slogan on a billboard by a very well-known charity.

Let’s hope today’s report causes charities, health organisations, research funders and others to pause for a moment and think carefully about the language they are using in their fundraising and advertising.

A bit of ‘care’ would not go amiss.

 

If you haven’t read Elspeth Mathie (@elspeth_mathie) and colleagues’ excellent paper ‘Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study’  in Health Expectations then I highly recommend a read over the next few days.  

Their small but significant study  – which was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East of England – is based on a survey of, and interviews with, public contributors and researchers. It shines a spotlight on the whole issue of feedback; the lack of which has been a source of some irritation for the public involvement community for many years.

 

For me the most striking thing about the paper is not so much its headline figures reporting that, while receiving feedback is important to the vast majority of contributors (82%), 19% had received none at all. Shameful though this is.  Or the fact that when feedback does happen it can take many different forms. Equally we should not be surprised that there are many different ways of giving feedback and a number of factors that can get in its war – from time, to changes in personnel to mention just two.

No, for me, the interesting thing to emerge from the interviews conducted in the study is that while some researchers saw feedback as a matter of courtesy (true), public contributors viewed it as an opportunity to learn and improve. Implicit in this is a sense that perhaps some researchers still feel they ‘have to’ do ‘PPI’ rather than see it as a valuable part of their work.  Perhaps the good news is that the experience of giving and receiving feedback seems to improve as researchers and contributors got older and wiser.

Perhaps the other key message that I have taken away with me is a reminder of the need to think about feedback at the start, rather than at the end, of a research project. For by the end it is all too late.  People are exhausted and want to move on. Deciding with public contributors at the very beginning of the project what you want to feed back, why and how you are going to use the information gained is extremely important.

As highlighted in the rather brilliant new ‘Guidance for Researcher: Feedback’ published by Elspeth Mathie and the team at the Centre for Research in Public Health and Community Care with the support of the East of England NIHR Research Design Services (RDS) organisation which I also highly recommend.

One final note. A commitment to give feedback and learn from it is a sign of a healthy team culture. As with many other things to do with team culture the tone and style is set at the top. Feedback is therefore one of those things that we should hold Chief Investigators and Principal Investigators accountable for.

Have a great weekend.

Oh, and feedback on the blog is always welcome. Thanks.

 

 

 

 

 

The Association of the British Pharmaceutical Industry (ABPI) is shaping up for its annual conference later this week.

I see from the programme that the heavy-hitters of British science such as Sir Mark Walport from UK Research and Innovation (UKRI) will be out in force to give their perspective on the big picture.

As a presage to its conference the ABPI has published the results of a rather good YouGov survey of public attitudes to medical research and innovation.

The survey shows that the majority of people would give a blood sample, share their data or donate an organ for research (although I do think the numbers are lower than they should be). People are proud of the UK’s history of innovation and see the NHS as one of the main reasons for advances in care and treatment. People put a cure for cancer and then Alzheimer’s at the top of their wish list but are most worried about ‘poor diet.’

One of the really interesting sections is that in which people are asked to make trade-offs in future research:

The public are split on whether they would like to live beyond 100 years old if medical advances made it possible: 37 per cent chose either option (with the rest saying “don’t know”). While “a significant majority – 68 per cent to 12 per cent – believe that using medical technology to eliminate genetic disorders or diseases should be allowed, a bigger majority – 74 per cent to 10 per cent – believe it should not be allowed to make people “smarter, faster or stronger” or pick personal characteristics. 

It will be interesting to see if the debate at the ABPI conference focuses on this, the usual obsessions with boosting public support for data sharing, or issues around patient and carer access to research and innovation which is surely the most pressing.In echoes of the NIHR/HRA survey in March the YouGov poll highlights that people believe fellow citizens in other parts of the country are getting access to innovations that are not available to them. The public perception that there is a postcode lottery in innovation is a worry. Accurate or not it could serve to chip away at the public support so evident in the headline survey findings put out by the ABPI. How’s that saying go? ‘Accessing is believing’

This week I had the good fortune to be on the judging panel for the NIHR Clinical Research Networks/McPin Foundation/MQ 2018 award for service user and carer involvement in mental health research.  It was a brilliant field to choose from. The winners will be announced very shortly.

One of the reasons I readily take up invitations to judge such awards – apart from the fact that I enjoy it – is that it is an excellent way of keeping up with what’s going on, the challenges and opportunities. This week was no exception.

Retention in public involvement

I am sure that I am not breaking any confidences if I say our deliberations highlighted once again the issue of ‘retention’ in public involvement. Or to put it more simply: helping people to ‘stick with it.’  Supporting service users and carers to remain involved and feel they are making a difference. Supporting researchers and research teams to remain committed to involvement. Building and maintaining relationships against an often chaotic background requires investment of many sorts by all partners: energy, passion, emotional commitment, resources, training. The list goes on.  Flexibility, a sense of humanity and an underlying philosophy of mutuality, staying true to values and principles tend to mark out the best teams (and by teams I am including patients, carers and the public).

Much as we talk about public involvement being a relationship business, the actionable evidence on how such relationships can be supported and sustained is weak. I am glad that some are now ‘on the case’ so to speak – read this blog report on a recent event in Manchester by the excellent Bella Starling for instance. See also this by healthtalk.org.

As a tangent I would also encourage people to read this week’s BMJ editorial by Kristin Liabo, Nicky Britten and others on clarifying the roles of patients in research. It is a reminder that being clear about roles and setting expectations is fundamental to getting such relationships off to the right start.

Retention in clinical trials

Then there is the matter of retention of people in clinical trials as participants. I was interested to see this recent survey by Applied Clinical Trials and SCORR Marketing as reported in ‘pharmaphorum’ which pointed to retention in clinical trials being a key metric for ‘patient engagement’ by pharmaceutical companies. Yet the same survey shows that most companies are performing poorly in terms of investing in their relationship with patients.  The NIHR CRN have done annual surveys on patient experience in trials for several years now and the results consistently show that relationships with staff are one of the key factors in maintaining people’s motivation to stay in a trial.  My anecdotal ‘add’ to this would be that the role played by clinical research nurses in this respect continues to be underrecognised.

But enough of the anecdote. If you want to help highlight the factors that help people stay in clinical trials then you can do no better than complete the survey being run by the PRioRiTyII project here. #PRioRiTyII

Staff retention

Another dimension to ‘retention’ which we need to talk about is that of our staff. It is an issue I care about deeply as NIHR National Director because of the growing number of colleagues fulfilling ‘PPI’ roles across the NIHR.  Passionate, committed, skilled, experienced, creative and yet sometimes regarded as curiosities in their own organisations. It reminds me a bit of when I was a ‘communications person’ (that’s what we were referred to) way back in the early ’90s. Now of course it is a brave organisation that goes into the public arena without the support of their Director of Communications.  How times move on.

Being the interlocutor between organisations and patients, carers and the public, facilitating, building and maintaining relationships between partners is not an easy ask. The work is more often than not rewarding and the sense of job satisfaction very high. My neighbour who came round for a birthday drink (hers not mine) yesterday said she thought it sounded like the best sort of work in the world.

But for some the working environment is difficult. In other instances it is openly hostile. Email bounce-backs from organisations – and what they say – are an interesting indicator for me of an unhealthy churn in personnel.  Some staff are not easy to deal with. Some patients, carers and members of the public are not easy to deal with. It can feel exhausting, demoralising to feel you have to beg for small scraps of money in multi-million £ institutions.

Truth be told we do not do nearly enough to support the growing number of men and women working across many health research organisations now supporting public engagement and involvement.  I am very conscious of this. Recently I have been talking to PCORI and CIHR in the US and Canada – where the same issues are being faced – about whether there is something to be developed jointly.  INVOLVE has a critical role to play of course. There are links to be made with what the university community is doing through the National Co-ordinating Centre for Public Engagement. Perhaps ‘PPI leads’ could begin to form themselves into a professional grouping as science press officers have done very successfully.  See the work of Stempra.

Staying the course can be hard to do whatever our role in research.  A more open discussion about the issues is important. We need to recognise the factors that contribute to mutually supportive relationships. An honest appraisal of what it takes to sustain these and a readiness to resource this effort is needed by funders and organisations

But in the meantime I hope you’ll be sticking with it.

I am.

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: https://sites.google.com/nihr.ac.uk/pi-standards/standards

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: https://sites.google.com/nihr.ac.uk/pi-standards/test-beds/test-bed-projects

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: https://sites.google.com/nihr.ac.uk/pi-standards/test-beds

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) (https://twitter.com/sdenegri/status/971701304849522688?s=21) 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
You can also find me at:
Twitter: @SDenegri
Blog: https://simondenegri.com/

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.