London

Off to Liverpool today. I am chairing a session at the Pancreas Society’s first ever PPI forum. This is the opener to their annual scientific meeting which takes place the rest of the week.

Last Friday was another first. I spoke to, and took part in, the inaugural meeting of the MHRA’s ( Medicines and Health Products Regulatory Agency) patient group consultative forum.

Is that the sound of broken shards from a glass ceiling I can hear beneath my feet? Let’s not tempt fate eh?

What else connects Liverpool to our drug regulator?

Well, just a few days ago in Liverpool, the Medical Research Council (MRC) and Sense About Science launched a new public guide on drug safely entitled: ‘Making Sense of Drug Safety Science: Investigating the science of side effects.’ And an excellent publication it is too in talking about side effects and how we are doing more to learn about them. You can find a copy here: http://www.senseaboutscience.org/pages/health-and-medicine.html

But there is more to this issue than increasing public understanding and awareness.

In my experience, drug safety is one of those issues where doctors, researchers and patients are a long way from reaching a satisfactory working relationship.

At root is the clash between ‘scientific evidence’ and ‘patient experience’ with the validity of the latter often disparaged. Typically this is couched in terms of ‘the hierarchy of evidence.’ It is an argument intoned with the same sort of words and feeling that we used to hear from members’ clubs about why it was necessary to exclude women.

We had such a question about ‘evidence’ versus ‘opinion’ to the patient panel from the floor of the ABPI conference last week. I also heard those arguments played out at the MHRA meeting but thankfully with good grace and a willingness on both sides to listen. The resistance to listen and respond is the jagged edge of regulation on which patients often cut themselves.

I am not sure that any patient or patient group is seriously trying to unseat the place of science in regulation. But I do hear them urge that regulators use different instruments according to the environment and context – as pilots do when flying in good weather or bad – to allow the patient voice to be heard more clearly. The same goes with doctors.

If seems foolhardy to me if regulators and the professions do not embrace the ‘informal’ yet undoubted richness of conversations that patients have about their medicines. And we have already seen with some drugs such as statins how the patient voice has been critical in changing practice and attitudes. Or in devising new tools like the medication passport developed by the North West London CLAHRC. If only the system might turn to such creative minds to develop a more patient-friendly yellow card system for reporting adverse events. We might get rid of forms for a start.

With vision we might see patients as an integral part of the regulatory system for improving drug safety. Not the inert mass to be protected.

Yes, regulation might just be the thing for them to cut their teeth on.

At least we are now at the table.

Passing this invite on from Sir John Chisholm, Chair of Genomics England, for their event on 3rd Oct. Email address to attend included below along with website address.

Hello,

I am writing on behalf of Genomics England to invite you to our first Stakeholder Event on Thursday 3rd October 2013. The venue is as follows:

The Great Hall at St Bartholomew’s Hospital,
West Smithfield,
London, EC1A 7BE.

There are two events:  the first, for the public, patients and patient support charities from 10.30 – 12.30; and
the second, for clinicians, scientists, healthcare professionals, funders and allied organisations from 14.00 – 16.00.

Each event will consist of short presentations about the goals of the Genomics England programme and have short talks by people representing key stakeholders. This will be followed by interactive discussions.

Light refreshments will be served.

If you would like to attend please confirm by sending an email to: townhall@genomicsengland.co.uk

We are planning on streaming the event live on our website (www.genomicsengland.co.uk). If you would like to apply for a log-in for this streaming then please email us on the address set out above.

With best wishes

Yours sincerely

Sir John Chisholm
Executive Chairman Genomics England.

The Department of Health this morning announced the successful NIHR Collaborations for Leadership in Applied Health Research and Care (CLSHRCs).  The formal press release can be found here.

Thirteen CLAHRCs have been awarded over £120M in total following an open competition earlier this year.  The details of the latter can be found here. Further details on the CLAHRCs and the themes they will concentrate on will appear on NIHR’s website soon.  But here is the list of the CLAHRCs by name and links to local press coverage where I have found it.

Worth reiterating that, as with all NIHR funded schemes, each CLAHRC has a strategy and plan for promoting and advancing public involvement in their work.  But, interesting, 6 of them also have a research theme focusing on public involvement/engagement/experience: NW London; South London; East; Wessex; North West Coast; Oxford.

Congratulations to them all.

NIHR CLAHRC   North West London
NIHR   CLAHRC  East Midlands
NIHR CLAHRC Yorkshire & Humber
NIHR   CLAHRC  West Midlands
NIHR   CLAHRC  South London
NIHR CLAHRC   Greater Manchester
NIHR CLAHRC   East
NIHR CLAHRC   South West Peninsula
NIHR CLAHRC   Wessex
NIHR CLAHRC   West
NIHR CLAHRC   North West Coast
NIHR CLAHRC   London: City, North & East

NIHR CLAHRC  Oxford

Last week Dame Fiona Caldicott published her report on information governance in health and social care (Caldicott2).  Dame Fiona is characteristically down-to-earth in this Guardian interview about the need to get people used to the idea of sharing data if they are to see further benefits from medical research.  You can read the full report here and, in my view, it is sound on the use of patient data for research purposes. It is also good that the Government has asked her to lead the group that will monitor implementation of her recommendations.  They will need a firm but guiding hand that’s for sure.

The fact is that the UK has a whole lot of data – often called ‘Big Data – and the issue is how to get better at using it.

Today the Science Minister, David Willetts MP, opened a new £30M facility in Oxford called ‘The Big Data Institute’ (Do you think that they have signs up for visitors warning them not to bump into the oversize numbers walking through the lobby?).  Earlier in the week he also launched the UK’s four new e-Health Informatics Research Centres (e-HIRCs) and Network at a conference at the Royal College of General Practitioners (RCGP) in its new surroundings.  The four centres will be in Scotland, Wales, the North and London.

Their role: to make health informatics work for medical research and for patient benefit, to enable us to crunch the numbers so to speak and mould them into new pills or new ways of delivering care. They have a HIRCulean task ahead of them!

I was tweeting merrily from the conference on Wednesday afternoon because I was so pleased to hear the head of the Network, Andrew Morris, and the leaders of the four new Centres, Professors Ian Buchan (North), Ronan Lyons (Wales), Harry Hemingway and; Jill Pell (Scotland) all talk about the priority will be given to public involvement and engagement.  The proof will be in the eating of the pudding of course.  The danger for any network is that it becomes introvert and fails to grapple with the practical applications of what it is doing.

During yesterday’s conference proceedings I chaired two workshops.  In each, the question of people having access to their medical records cropped up.  Also how this might hinder or assist in improving the quality off data held about them.  The Government has said that everyone will have online access to their medical records by 2015 and that this is a non-negotiable for the NHS.  But the level of caution and nervousness in some corners of both workshops was palpable.  It is a little like listening to Euro-sceptics.

This is a shame because the UK has so much going for it when it comes to the knowledge, expertise and infrastructure it has developed just to make sense of the increasing amounts of data in our own health and social care system.  This and the very fact of 60 million + people sharing the same health service puts us in a remarkably advantageous position.  If only we could also embrace how patients could be partners in this whole project.  Our US colleagues would love to be able to work with a system such as ours.  However, they more than make up for it with the way they think about the citizen being at the heart of their endeavour.

Professor Sam Their from Harvard University put it best when he urged us to wake up to the fact that health system will be faced with a ‘more technically sophisticated, inquisitive and informed public’ than ever before.

……By the way, this seems as good a moment as any to remind people of the excellent ‘Your health record saves lives’ leaflet which was designed by the UK Clinical Research Collaborations (UKCRC) partners with patients and is available from here.  It explains how people’s medical records are used, gives some case examples of the benefits have come from it and talks about the risks and where you can get more information……

 

I was delighted to see this getting considerable airtime on the radio this morning: the launch of the London Lung Cancer Alliance with its aim of recruiting 3000 lung patients into clinical trials per year.

Lung cancer is on the rise in the UK and it is a difficult condition for which to raise public awareness and funding, not least because of the misconceptions that people often have about the disease.  Stephen Spiro from the British Lung Foundation described it as having a ‘low level of resonance’ with the public in his interview on BBC Radio 4’s Today programme today.

Having spent a short time with a research funder yesterday as they contemplated the future, the London Lung Cancer Alliance is just the sort of medical research model I think is right for the future: collaborative, providing national coverage, clear about its proposition, bold in its ambitions and close to the patient.  The focus on the whole progression of the disease as well as a subject of inquiry is much welcome.

Alan Ashworth, the Chief Executive of the Institute of Cancer Research, London, has written a good blog on the announcement today.  It includes his own family experience with lung cancer.  At last, there seems to be more than a chink of light at the end of the tunnel for lung cancer research and people with the disease.

Yes, it truly does seem as though Friday should be dubbed ‘NIHR Friday’ given the propensity for my erstwhile colleagues to push info out on the aforementioned day.  The clutch of interesting announcements this week include:

Publication of the NIHR Annual Report for 2011-2012.  You know, I’m sorry if this offends some people but I’m proud of what the UK has created in NIHR and I’m proud that I work for it.  I’m also proud that a publicly funded organisation should be arguably the world’s leader in its support for public involvement in research.

I’m only part of my way through these but you can view the 21 entries to the NIHR New Media Competition and vote for your favourites by pressing the ‘Like’ button as and when.  The aim of the competition is to create videos that will enthuse people about research.  Loving their work so far.  You need to vote by April 30th and the winners will be announced in early May.

The NIHR Central Commissioning Facility (which is like the organisational Michael Grade of NIHR) has just published its patient and public involvement plan for 2013-2015.  And very good it is too.  In an exclusive email to me (not!) CCF say: ‘Over the next two years, we will be looking for some of our public contributors to get involved in helping us to develop and deliver projects in the Plan. At this stage, it would be useful to identify public contributors willing to express their interest in this process. Initially this would commit people only to joining an email distribution group that we would then come to for input as we begin to develop the delivery of projects and activities in the Plan.’  More details on the website.

And, any time after about Wednesday next week, I guess ‘It’s ok to ask’ about International Clinical Trials Day and some of the plans for that.

Enough already.

 

Dear
Colleague

As a public contributor to the work of the Central Commissioning
Facility (CCF), I hope you will be pleased to hear that we have just published
CCF’s Patient and Public Involvement Plan 2013 to 2015.

The Plan is
available to download from our website along
with a report of the consultation that took place in January 2013 and a
background report. (If you would prefer to receive paper copies of all or some
of these documents please email me, philippa.yeeles@nihr-ccf.org.uk,
with your postal address.)

Over the next two years, we will be looking
for some of our public contributors to get involved in helping us to develop and
deliver projects in the Plan. At this stage, it would be useful to identify
public contributors willing to express their interest in this process. Initially
this would commit people only to joining an email distribution group that we
would then come to for input as we begin to develop the delivery of projects and
activities in the Plan.

If you wish to be part
of this distribution group please do not reply to this message but instead email
me: philippa.yeeles@nihr-ccf.org.uk.

If you have any questions or queries please don’t
hesitate to get in touch.