In support of the Rome Declaration on responsible research and innovation

After yesterday’s publication of the results of the Research Excellent Framework (#REF2014) comes the post-mortem, introspection and then inevitable debate about REF2020.

We will have to wait a wee while before we learn more about the impact assessment aspect of #REF2014 and the overall story it tells us about how research in higher education instiutions is having an impact on society.  With nearly 7,000 submissions on impact looked at by the panels of assessors, I suspect there is more than one story lurking behind the headlines.  Already in public involvement circles there is much debate about the degree to which involving people in decision-making about research has featured in these submissions.

But, if you do have a few minutes today, I recommend you read Jack Stilgoe’s piece in The Guardian.  Jack uses the REF as his starting point to question the assumptions (and obsessions?) that drive the way we do science now.  He points to the Rome Declaration on Responsible Research and Innovation launched last month as part of the Italian Presidency of the European Union as the way forward and I heartily agree (and it is not just the Ialian in me).

The declaration has some strong words to say about the need for a different approach to ensuring science is better aligned to society’s priorities and needs.  For instance:

‘Decisions in research and innovation must consider the principles on which the European Union is founded, i.e. the
respect of human dignity, freedom, democracy, equality, the rule of law and the respect of human rights, including the
rights of persons belonging to minorities.’

and:

‘….we cannot achieve technology acceptance by way of good marketing only. Second, diversity in research
and innovation as well as the gender perspective is vital for enhancing creativity and improving scientific quality. And
third, early and continuous engagement of all stakeholders is essential for sustainable, desirable and acceptable innovation.
Hence, excellence today is about more than ground-breaking discoveries – it includes openness, responsibility and the
co-production of knowledge.’

[There’s also some really interesting documents from the conference at which the Declaration was signed including this one on ‘stock-taking.‘]

The document is undoubtedly going to be influenctial in how science policy discussions unfold in the future including those on Horizon 2020.

When you hold up the Government’s new science and innovation strategy to something like the Rome Declaration you realise the poverty of democratic intent within the former. It is the future as far as I am concerned and you will find hints of the same sentiment when the report from ‘Breaking Boundaries’ review is published in the New Year.  As you will, the increasing need to work internationally to make these things happen.

 

A nod to Nelson Mandela on the eve of the G8 Dementia Summit (agenda published)

It is no surprise that, in death as in life, Nelson Mandela has caused us to gaze upon humanity with warmth and optimism. I am sure I am not alone in having taken a great deal of pleasure from reading the celebrations of his life and reflecting on how different tomorrow would look were it not for him.

No more so than Sarah Boseley’s article  in The Guardian on Friday .  She deals with the way in which Nelson Mandela changed the HIV/AIDS agenda.   Her piece focuses on Nelson Mandela’s speech at the international Aids conference in Durban in 2000 – arguably a key turning point in the fight against the disease.  His words refocused the minds of warring scientists, activists and politicians, on tackling what mattered most: the human tragedy being played out on the African continent.

Sarah Boseley inspired me to dig out the text of his speech and here it is.  I hope you will find just five minutes today to read it.  Even on the page it is a beautiful piece of oratory. You can hear Nelson Mandela’s voice so clearly.

Two extracts struck me as particularly relevant to the discussions at the G8 Dementia Summit in London tomorrow:

“Now, however, the ordinary people of the continent and the world – and particularly the poor who on our continent will again carry a disproportionate burden of this scourge – would, if anybody cared to ask their opinion, wish that the dispute about the primacy of politics or science be put on the backburner and that we proceed to address the needs and concerns of those suffering and dying. And this can only be done in partnership.

I come from a long tradition of collective leadership, consultative decision-making and joint action towards the common good. We have to overcome much that many thought insurmountable through an adherence to those practices. In the face of the grave threat posed by HIV/AIDS, we have to rise above our differences and combine our efforts to save our people. History will judge us harshly if we fail to do so now, and right now.”

..and finally:

“The challenge is to move from rhetoric to action, and action at an unprecedented intensity and scale. There is a need for us to focus on what we know works.

We need to break the silence, banish stigma and discrimination, and ensure total inclusiveness within the struggle against AIDS; those who are infected with this terrible disease do not want stigma, they want love.”

I am not making a comparison between HIV/AIDS and dementia.  But Nelson Mandela’s words embrace eternal themes that are well worth remembering on the eve of tomorrow’s summit.

The G8 Dementia Summit programme was published yesterday and can be found here.  The website will also have coverage of the meeting all day tomorrow I believe.

My good friend, colleague, former carer to her mum, Peggy, and campaigner, Susie Hewer, has a piece on the dementia summit website about her own experiences with dementia and what the summit means for her here.

My previous blog on the G8 Dementia Summit can be found here.

BBC coverage of Nelson Mandela’s memorial service taking place in Soweto today is here.

GSK’s Witty remarks are easy to swallow from a patient perspective but the rest of the flock must follow

I spoke at the Clinical Discovery 2012 conference yesterday about the future value and impact of clinical research.  This is one of a number of similar events I’ve presented at over the last month or so.  On reflection there generally seems a more ‘upbeat’ conversation among conference-goers about clinical research in the UK compared to this time last year.  In fact I’ve heard a number of people speak from the floor about how we are rising up the international league tables again in terms of delivering clinical trials.  It will be interesting to see any emerging data to support these case reports.

One of the slides I put up yesterday showed this reported quote from Sir Andrew Witty’s speech (CEO, GlaxoSmithKline (GSK)) at the Wellcome Trust from last week.

“There isn’t a day goes by that me and the rest of the company aren’t grateful for what patients offer to do in a clinical trial. They offer willingly to go through a process of experimentation. That’s an extraordinary gift from individual men and women. At one very human level actually we should be finding ways to make that commitment as useful as it can possibly be for society.“

This is the speech in which Witty made his announcement that GSK would be opening up its clinical trial data and pulling together an independent board composed of, among others, patients, to consider requests from researchers who wish to access it.  An undoubtedly welcome move.  But, as the old saying goes, ‘one swallow doesn’t make a summer.’  Patients – or at least the ones I talk too – are increasingly concerned about this stuff and the rest of industry needs to be encouraged to follow suit.  As more patients become involved in research they will rightly have searching questions that can only be properly answered with greater transparency.

Anyway, I suppose the point I was trying to make in my slide was that, in any discussion about the value and impact of clinical research, it is imperative that we define it from a patient perspective – in terms of patient outcomes, improvements in quality of care but also their experience of taking part in research.  Not just the wealth of the nation. And – as Sir Andrew says in his quote – that also means, at a very human level, acknowledging the value of people’s contribution.

I went on to say that one of the perennial complaints of people who have taken part in research – and a symbolic one in terms of their status within the system – is not being thanked for taking part in research and, more importantly, receiving no feedback whatsoever about what the research found and what question it helped to answer.  I guess someone will tell me – as others have on a number of occasions – that we can’t do this because of commercial confidentiality etc etc.  But I suspect they will crumble in the same way that many of the arguments against greater openness and transparency in industry trial data are crumbling.  Sooner rather than later I hope.

 

 

 

Are you a patient? Then, I’m holding you for questioning. You have the right to…..

Just in case you had missed it, it’s all about patient experience from now on!  And a good thing too.

Or, at the very least, it seems the intention is to ask people more questions about their experience.  A lot more questions in fact.

In the new world, I wonder, will we be met by NHS ‘chuggers’ as we walk through the doors of our local hospital for an appointment?  Will there be follow-up calls?  What happens if we refuse? Do we have the right to remain silent?  Do we get the right to one telephone call before questioning?  A friend perhaps? I need to know.  I’m not good under good doctor, bad doctor questioning.  Although I do respond well to plea bargaining about diet etc.

So, you might want to get your question in to the expert questioners first, by taking part in The Guardian’s live Q&A at lunchtime this Friday 15th June about patient experience and feedback.  I tend to agree with Dick Vinegar’s take in The Guardian last month that patient feedback is ‘a blunt instrument that needs sharpening.’

Returning to the broader point about patient experience, recent ponderings on the subject led me today to the Cleveland Plain Dealer in Ohio, USA.  Cleveland is a very rainy city if I recall from my brief trip there years ago.  But this highly readable article felt like the sun coming out.  Entitled ‘Art of patient satisfaction meets the science of medicine’ it shines a light on what putting patient experience at the heart of a health organisation’s culture really means in practice.

The organisation concerned is the Cleveland Clinic and its turnaround story has also been featured recently in the Harvard Business Reviewyou can read it here for $6.95!  In sum, questions are a good starting point..but it’s what you do with the answers that really matters.  Obvious point but patient experience does suggest it needs repeating time and time again.

Here’s some more on the Cleveland Clinic’s approach to patient experience. And this article – looking at the drive to appoint Chief Patient Experience Officers (CPEO) in New York hospitals in the same way that the Cleveland Clinic did – just shows how quickly these things become an industry in their own right.  Is that good or bad?  Bad if the industry loses sight of its mission.

Nonetheless I quite like the idea of being questioned by the CPEO next time I’m in Cleveland.  Sort of feel they should be accompanied by R2D2 don’t you?

 

The public interest argument must extend beyond open access…here’s a sort of lay summary

Good Guardian blog yesterday giving a lay summary of the ‘open access’ debate vis a vis papers published in scientific journals.  There’s also been a healthy exchange of letters in The Times this week but ironically that’s behind their paywall.  However, at least The Times is available in all good newsagents at a reasonable price.

Unsurprisingly, I totally get and support the arguments in favour of open access.  But inveterate blogger and public engagement in science expert, Alice Bell (blog home page here), twittered this morning that open access is more than just about publishing papers.  Hear, hear!

I believe the arguments being made by research funders and others, that ‘open access’ has societal benefits, are sincerely held.  But, at the same time, the debate does sometimes come across like a power struggle between the mighty and the mighty.

How good, indeed seismic would it be, were funders to use the same public interest arguments to ensure that the people they fund got their act together, not just about where they disseminate their research but how they disseminate it.

Public understanding of science will be marginally improved by better access to articles.  Yet, it could be radically improved if we also saw a commitment to the writing of a good lay summary of their work and to see this appear with every published article. For some reason, funders have seemed reluctant to pay serious attention to this as an important tool to understanding science, its dissemination and impact.  But it’s clearly in the public interest.

See the PatientsParticipate project for more.

Got to dash!