AMRC

First, the positive.
Why should this matter to you and I? Because this is the second occasion in less than six months when a senior research leader in the UK has been appointed by the public as well as fellow scientists.  The other appointment is Professor Bart Strooper of the new Dementia Research Institute which is to be based at UCL.  By all accounts the interviews with the public have been the most challenging part of the process for candidates.  World-class public involvement in action!
I am feeling less positive about the new Life Sciences Strategy which is due to be published as part of the Government’s industrial strategy (by all accounts, at the end of April).
I mean, who knows what’s happening with it? The stock response I get from most people when asked is ‘I wish I knew.’ Or similar.  Which suggests things are not as open, transparent and inclusive as when the previous Life Sciences Strategy was written in 2011. Either that or my memory of those days is failing me. Or, more likely, I’m simply outside the ‘circle of trust’ convened by the Government’s chosen author for the strategy, Sir John Bell.
By most accounts – and notwithstanding the occasional workshop – I hear that it’s a strategy being written by the life sciences industry for the life sciences industry. Which suggests a conclusion not unlike the Accelerated Access Review published before Christmas (and which has been subsumed within the Life Sciences Strategy process I believe). A review where the patient voice was swept aside from the main report in a rather nonchivalrous manner.
So, the first issue I have is with the way in which it is possibly being done. The second issue is whether we will see the link with patients strengthened as it should be.
What was good about the 2011 Strategy is the way that it was framed so that every patient had a role in making it happen.  David Cameron said, with reference to patient data, that he wanted ‘every willing patient to be a research patient.’  The UK Clinical Trials Gateway (UKCTG) was re-launched so that every citizen could have access to information about opportunities to take part in research.
It would be a counterproductive if not harmful if the 2017 Strategy took a step back from this view of the world where we are trying to make the best use of all our assets – citizens included, to break the connection between the life sciences and patients and the public which we have done so much in the UK to forge over the last decade. I thought the academic and commentator, Jonathan Grant, put it well in the Times Higher a few weeks ago when he said:
This is not to argue that we should not be supporting curiosity-driven discovery research, but rather to suggest that we should learn to listen to what society wants from research. If not, research and research funding could be caught up in the anti-establishment populism that has characterised the past few years. This may lead to a shift in research priorities and portfolios, but that should be welcomed as it will strengthen the implicit contract between researchers, taxpayers and donors. But to listen well will require a move from a model of supplying “ideas” generated by researchers to one where we are more actively listening to our supporters’ “demand” for solutions.
Taking Grant’s cue, this is my third issue: will the Life Sciences Strategy  reflect what the nation needs or the preoccupations of dominant voices who, with the best intentions, find it difficult to see beyond blue skies.
Indeed, my experience is that this is one of those episodes in science policy – others being the Cooksey report, the credit crunch etc. – when my basic science colleagues rise up like the knights in ‘The Weirdstone of Brisingamen: A Tale of Alderley’ to protect the nation at its time of crisis. Or rather ‘curiosity-driven discovery research.’  To suggest otherwise, to even hint that this might not be the whole answer to our troubles, is seen as treason. The Tower beckons. And I’m not talking about the one next to the Thames.It’s a shame. Just because we question does not mean we are not also its greatest supporters.
One day a few weeks ago I spent the afternoon talking with service users, local voluntary groups and researchers about partnership; partnerships to improve health and wellbeing for the most needy in our society. They are passionate about science in all its forms. But their everyday experience is of helping people who are beyond the help of anything that the cleverest person can do to a molecule.  It is a societal need that is desperate and growing. All this in a stuffy room in the shadows of some of our greatest research institutions and shiniest research facilities.  But then we are often most blind to that which lies in our shadow.
Perhaps we should put the draft Life Sciences Strategy to the test in front of a public panel.

Over the last few months, I have been noting down charity advertising copy as I go about London. Here are ten. Notice any trends?

Diagnosed with blood cancer, Chloe only has one hope…YOU. Text HOPE…. Anthony Nolan Trust 2013

Elliot is deafblind. He can’t tell it’s Christmas. Text TOY to….Sense

Help us beat cancer sooner – Cancer Research UK cinema advert late 2013

In the fight against cancer every moment counts
Because we’re not just fighting cancer
We’re racing against time
To do more research
To find more cures
To save more lives
One day research will bear cancer
And the sooner you give
the sooner that day will come.
Cancer Research UK Jan 14

We’ve found a cure for blood cancer. Pleased to meet you.
Anthony Nolan Trust

Conquer the London to Brighton Bike Ride
British Heart Foundation (BHF) tube advert jan 14

Cancer doesn’t care if you put this in the bin
(Cancer Research direct mail shot) feb 2nd 14 at home

Because no one should face cancer alone Feb 2014 train poster Macmillan Cancer

These things happen to my mother (‘other people’ crossed out) Breast Cancer CampaignMarch 2014 Warren St tube

I wish I had breast cancer
Newspaper ad – Feb 14 – Pancreatic Cancer Action

So sang The Beach Boys who were on Radio 2’s ‘In Concert’ this week.  Not that I’m a great fan but it seemed apposite given my week.  This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow, Leeds (see below).  To think I used to spend three weeks every autumn to attend the party conferences.  It’s like regaining a bit of my life again.

But before I get into the meat of this blog, I just thought I’d draw your attention to a presentation on the ‘Caldicott2’ website (this is the review looking at information governance in the NHS including use of patient data for research purposes).  Made by Dame Fiona Caldicott earlier this month it shares some early findings from the review and also shows the next steps for this important piece of work.  Look under the Southern Informatics listing on this page.

I’m off to Leeds tomorrow to speak at an NIHR regional event – the first of four happening over the next few weeks – aimed at strengthening dialogue with NHS Trust R&D Managers against the background of much change in the NHS.  I am looking forward to getting to know this audience better and hope that, during my small walk-on part, I can convey the important role they play in delivering research which will lead to better outcomes for patients.  I think I am erroneously listed as ‘a patient’ on the programme and am wondering whether that means I take on the even more misleading definite article on the day, and am then definitive in every sense of that word thereafter.  Let me worry about that one.

I notice that several organisations have been pushing out their responses to the NHS Commissioning Board Draft Mandate (it being the deadline).  The King’s Fund document is compelling as ever although, as always after reading their documents, I felt a bit as if I should have taken that further degree after all.  It has a strong statement on ‘shared decision-making’ which succinctly conveys what this should be in practice.

The Association of Medical Research Charities (AMRC) has joined forces with other research funders to put in a very comprehensive response focusing on the research and innovation objectives in the Mandate.  Some good ideas in there including the point about better training for NHS staff on research, a point that was also made by Jonathan Sheffield (NIHR Clinical Research Networks) during The Guardian debate on innovation this week.  It’s certainly true that if patients are to see choice become a reality in research we need to do much more to make sure that NHS staff are ‘research-aware.’  Meanwhile I thought Cancer Research UK’s response was helpful about ‘patient choice’ saying (briefly) what needs to happen to make it work and what they might be able to contribute.  I think this is the key – organisations understanding that in this new environment what is pushed from the outside is going to be as, if not more, important, than what is put out from the centre. And I sometimes wonder whether the sense of shared responsibility has quite sunk in in some quarters.

Tangentally you might want to check out the blog I have written about patients and Academic Health Science Networks (AHSNs) for the Greater Manchester (AHSN) website.  Last week at the INVOLVE annual symposium for members it was interesting to hear people talk about their different experiences of working with AHSNs.  Helping support their work in trying to avoid groundhog day in these new organisations, is going to be a focus for the future I suspect.

This afternoon I tweeted about the national portal for people with dementia and their carers to register their interest in taking part in research and be informed about future trials.  It is being developed by DeNDRoN and will be developed shortly.  This really could be the most significant development in helping to nurture a research-active patient community since the Alzheimer’s Society set up QRD in the 90s.  The opportunity of the PM’s Dementia Challenge to give it the best start in life should not be missed and I’m looking forward to chairing the public involvement group that is going to help guide the portal’s development.

Seem to be on the road a lot from next week as well and look forward to meeting people in Birmingham at the next NIHR Regional R&D Day, the Mental Health Research Network (MHRN) conference and other places.  Reminds me I must buy Ben Goldacre’s new book to read on my travels.  And this from the US Federal Drugs Administration today seemed relevant.

If contemplating NHS change rest assured, and this from one who once visited Mt Etna, that the lava does solidify, some old structures do survive, and it is possible for new ones to be built with solid foundations.

Herewith some new and some not so new ‘kids’ on the block in the world of research.

First, great to see that my good colleague and patient advocate, Derek Stewart, has started his own blog and has got off to a predictably brilliant and incisive start with a piece entitled: ‘What I want from research.’   I’ve also listed his site on my blog roll (see below).

The British Heart Foundation (BHF) has a new report out today entitled ‘Clear and Present Data.’   It examines how use of patient data is integral to medical research.  There’s a youtube video available through the above link and BHF have also published the results of a YouGov survey of public opinion on patient data issues.  Suffice to say that this is all part of a significant push by the medical research charity sector on patient data issues – it is, for instance the theme of AMRC’s parliamentary summer reception on 12th July.

The BHF report makes six recommendations including introducing an opt-out system for use of anonymised data in research (already a Government proposal subject to the outcome of a public consultation later this year), and changing the remit of Caldicott Guardians.  Not sure about the last one – I would need to think it through from a patient perspective in the context of a ‘localised’ NHS.   But good to open the debate.  For the results of the survey and an overview it might be easiest to read the guest spot on the Association of Medical Research Charities (AMRC) blog by Joe Clift from BHF. 

A number of BHF’s recommendations are focused on the HRA, so a brief ‘congratulations’ to the excellent Janet Wisely who was recently appointed Chief Executive there and has really taken up the public involvement challenge.

Finally, the entirely new kids on the block are AHSN’s or Academic Health Science Networks.

The Department of Health published a guidance document about their formation on Friday, and potential networks have been asked to submit ‘expressions of interest.’  AHSNs really do represent a significant and positive enhancement in terms of where research meets the NHS.  It is not so much what they are as an entity as what they will bring together in terms of local NHS organisations, academia, industry, providers etc behind a common purpose.  It is also the comprehensiveness of their remit given that they will not just be responsible for the diffusion of innovation but also the promotion of research including trials and public participation.  I suspect more change will ripple outwards.  The Governance arrangements will, however, need to be strengthened with strong public involvement mechanisms.

Perhaps AHSN’s represent new lava flows in research bringing more fertile grounds for growth with them.