The ageing of consent in health research Reply

medical research

There was a story in The Times yesterday about the successful campaign being run through Facebook in the US to get people to become organ donors. Thousands of people have responded to the message passed from friend to friend. Similar success has been had in the UK. My Citizens, quite literally, many of us have given it passing thought and said ‘yes.’

I was drawn to this story because, at the conferences I have attended over the last week, there has been an active discussion about how patients are asked to give consent to take part in clinical research. It has left me wondering not just ‘what it is for’ but ‘who is it for?’

We seem to have developed the most blunt and cumbersome process for codifying a very human, perhaps even humane, act. An act that many of us are more than willing to make I should add.

Listening to patients and clinicians has strengthened my view that they feel the hand of others on their shoulders at the point of giving/taking consent. And I’m not talking about history or a higher being. No, it’s lawyers, managers and others they sense breathing down their necks (actually one of the above does think its God by the way).

The main ‘instrument of perversion’ – as I like to now call it – is the consent form. Often long and convoluted it flies in the face of all the evidence about how people absorb Information and build understanding. Nor does it mirror our life experience of how we give consent in other contexts. For many patients and their relatives I am sure it must feel like an out-of-body experience but without the light at the end of the tunnel – no wonder it is cited by people as a barrier to participation.

As important as the dreaded form, is who is involved in the conversation on the professional side. Often the rules do not allow it to be the person with whom a patient has – or will have – a close relationship with during the research. I know this is a common gripe of clinical research nurses whose role in partnering patients in research seems completely underplayed and under-valued.

Finally, we seem to approach consent as a one-off moment of decision-making into which we cram as much as possible. To put it another way, we are trying to do too much in one go. It can not – in fact I know it does not – lead to a good understanding in many patients about what is going to happen, the risks and benefits. (See the work cited elsewhere on this blog about people’s understanding around placebo for instance).

So what to do?

When I asked my wife what would help her to give her consent to take part in a trial she said: ‘I would like to know what I want to know’ and talked about having a framework which helped her to prioritise information according to her needs and questions and interrogate it in her own way and under her own steam.

Thankfully this participant-led approach is something others are trying to develop. From the use of online consent in bedside tablets (as I heard in Oxford), to DVDs and videos (PATH Biobank in Germany) or the redesign of forms and accompanying literature to include flow-charts and visuals etc. Others are trying a more deliberative approach with patients which occurs over a longer period of time.

As an aside, in India – where the conduct of clinical trials is being reformed to stop the continued abuse of participants by pharma and their contract organisations – they plan to cope with low literacy levels in the population by taking consent on video. Well, why not here?

A job for the Health Research Authority (HRA)? Actually, there’s no reason why we as patients could not come together in an innovatorium to radically redesign the consent process, develop models and campaign for national adoption.

All I know is that the current system is creaking and needs to change before it croaks it.

What do you think?

NIHR Friday: Lift-off for patient safety research in UK Reply

primary care research • Tags: , , , , , , , ,

This week saw the launch of the NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre (NIHR GM PCPSTR for short!), a partnership between the University of Manchester and Salford Royal NHS Foundation Trust.

NIHR is funding the Centre - believed to be the only one of its sort in the world – to a tune of £6 million over five years.  It follows also the establishment of the NIHR School for Primary Care Research (@NIHRSPCR) two years ago.

The Centre’s aim will be to ‘define, develop and test innovative ways of improving patient safety in primary care.’ Researchers and patients will focus on four key themes:  medication safety; multi-morbidity; safety in general practice and; informatics.  The evidence-base in each of these areas varies but is generally under-developed and this initiative will certainly help to turn the situation around I feel.

10% of the core budget for the Centre has been put aside to fund public involvement in the work there.  That’s a clear vote of confidence in public involvement but also a recognition of the importance of empowering a strong patient partnership in the development of primary care patient safety.

A Research Users Group (RUG) has been established with a number of meetings already under its belt.  Its Chair will sit on the Centre’s Board.  Patients and the public will also be able to work with the Centre through its ‘Associate members’ and ‘Friends of..’ schemes that will be set-up in due course.  The commitment of the Centre’s Strategy Group, Board and staff to PPI can be in no doubt.

Speaking briefly at the launch on Wednesday I said I hoped that the Centre would mean three things for patients:  a fusion of good ideas from patients and GPs and the development of evidence to support their wider adoption in the NHS; the development of a network of organisations increasingly aligned around a shared vision of patient safety in primary care and; closer-working between patients, researchers, GPs and primary care staff.

Fact is that I think there are many straightforward and practical things we can do to make primary care safer and for patients.  As an aside, I had a long conversation with colleagues attending the event about the problems that arise in terms of people’s discharge from hospital simply because of the way information is passed on by hospital staff to a patient’s GP (i.e. consultants not following a standard format for discharge letters and putting their recommendations at the end of their letter rather than at the beginning!).  But other areas such as medication concordance (how to ensure you and I take the medicines we are supposed to in the way that we should) are more intricate and it will be more challenging to change practices, systems and behaviours.

I hope and believe that the Centre will give this agenda the momentum it needs.

Declaration: I am on the Executive Management Board of the Centre

 

 

Stadium Medicine Reply

medical research

Just to prove that I do have a life outside public involvement in health research, did I mention that I recently went to see Depeche Mode at the O2? Great gig. Never seen them before.

How our experience of live music has changed over the last twenty years? Once I could pretty much get a ticket to any gig. Brilliantly atmospheric venues would come alive as the music washed over us. Your feet would stick to the beer covered floor. There was little room to move (or breathe for that matter given the cigarette smoke). Sweat sodden clothes would stick icily to legs as we exited.

Nowadays tickets seem harder to come by. The prices are exorbitant especially for the good seats. But how you get these prime locations seems to be an ever-deepening mystery since; there are more classes than on your average airline. We all aspire to be in the stalls and standing, but unless we are v v lucky then we end up bobbing half-heartedly at our seat in the Gods.

Still the sound is incredible and the experience is mighty even if the band are small. Plus its safer, and travel to and from is much easier. Though this might be because concerts finish earlier these days so the neighbours are not disturbed.

No one could argue that universal coverage doesn’t exist in this environment. But universal access?

I sometimes wonder whether medicine is not heading the same way to our stadiums, held aloft on chariots each driven by a team of medical research riders.

The front page of today’s Times heralds the (not so new actually) national cancer registry launched by Public Health England. That’s a ‘Coming to your stadium’ soon sort of announcement isn’t it? As was the one a few months ago about the genome mapping initiative in cancer and rarer diseases. (It’s always cancer by the way, he says cynically and unfairly)

These are good things, I utterly agree. But there was a rather unfortunate juxtaposition of stories with that last example – at about the same time the Chair of the NHS Commissioning Board, Sir Malcolm Grant, said in the Daily Telegraph that people needed to get used to the fact that they would be paying for more NHS services in the future. And I can’t help feeling that all those new diagnostic tests underpinning the march of stratified medicine would be prime candidates as industry tries to make the economics work. That’s one way to restrict access while supposedly aspiring to universal coverage.

The drive is also coming from patients. The Medical Innovations Bill would give patients the right to choose to take highly experimental treatments in the event of a terminal prognosis. I have enormous empathy with it. But I also worry that the reality would be far from ideal, with only those ‘of means’ able to afford such a path in a safe environment.

I was trying to check this earlier but couldn’t verify it for sure. Perhaps someone out there can? It’s a quote from the writer Tom Wolfe that ‘class is America’s dirty secret.’ Perish the thought that it might also be the dirty end of medicine’s advance.

NIHR Friday: CLAHRCs Selection Panel announced plus NIHR Journals Library opens Reply

CLAHRCs, Collaboration in Leadership for Applied Health Research and Care, NIHR, Open Access, transparency • Tags: , , , , , ,

I was just going to tweet this but since it is in a downloadable pdf and not actually on the face of NIHR’s website, I thought it would be helpful to post it – the membership of the Collaboration in Leadership for Applied Health Research and Care (CLAHRC) Selection Panel:

Professor Huw Davies (Chair) Co-Head of School, School of Management, University of St Andrews,Scotland, UK
Mr Simon Denegri National Director for Public Participation and Engagement in Research, National Institute for Health Research and Chair, INVOLVE, London, UK
Professor Cy Frank Faculty of Medicine University of Calgary, Calgary, Canada
Professor John Gabbay Emeritus Professor of Public Health, University of Southampton, Southampton, UK
Professor Gillian Leng CBE Deputy Chief Executive at NICE and Honorary Senior Lecturer at the London School of Hygiene and Tropical Medicine, London, UK
Professor Steven Lewis President Access Consulting Ltd, Saskatchewan, Canada Adjunct Professor of Health Policy at Simon Fraser University, British Columbia, Canada.
Professor Tom Walley CBE Director, NIHR Evaluation, Trials and Studies, Director of the HTA Programme, University of Liverpool, Liverpool, UK

The original details for the CLAHRC competition can be found here.

And in other news this week the NIHR has launched its own ‘Journals Library.‘  I quote from the website:

“The NIHR has launched a new Journals Library, providing full publication and open access to an extensive body of health research. It comprises a suite of five programme-specific journal series, published online, which are fully searchable and provide a comprehensive record of work funded by these NIHR programmes. Building on the success of the existing Health Technology Assessment journal, the library will give accessible full publication of  findings of the research commissioned by these programmes and will provide an important permanent and comprehensive record of the work which has been funded.”

The official launch is on 20th June and I shall hold back a little on what this means for patients until I have spoken at the event.  It is very exciting and I am pleased NIHR continues to lead on practical action to open up research outcomes to everyone.

Blog: RCOG report highlights risk of ‘white coat fatigue?’ Reply

medical research • Tags: , , , , ,

Yep, the (Royal College of Obstetricians and Gynaecologists (RCOG) had a very, very bad day at the office yesterday. More importantly, so did mothers-to-be. They deserved much better from the Royal College whose mission since 1947 has been to improve standards in their profession for the benefit of the public. I suspect many in the profession feel let down too.

It is a shame as well because this is one of the College’s new scientific impact reports that I guess was started to improve the evidence base in the field as well as the reputation of the College!

But how a Medical Royal College – institutions known for their fastidious approach to everything – allowed such a report to emerge without the least bit of sense-checking for how it might be received let alone its evidence-less statements is mind-boggling? It is just as well we have sharp-minded organisations such as Sense about Science who won’t let this sort of thing pass.

The College, like many these days, has a patient network. It seems fairly well-developed although my experience is that the Colleges are quite careful about where their patient fora are allowed to tread. But I would be interested to know if they had any sight of the report as it was being drawn up. Public involvement in the course of these things can save many a red face.

The trouble is that bad news travels fast. It also sticks like a burr on the back of a woollen jumper. Yes, many women will just ignore this. But others will be concerned and anxious. I suspect it will also get distorted in its translation from person to person. Then what?

It will be interesting to see what RCOG does about this in the next few days. I doubt it will apologise, Colleges rarely say sorry. It is more likely to hunker down and hope the whole thing goes away for a while, ‘clarifying’ things in a new statement in a few months time.

Above all I hope it doesn’t claim that the problem is people don’t understand risk. I actually think the growing issue is not public understanding of risk but their ability to assimilate huge amounts of often contrary information and make sensible choices.

Being constructive about it, RCOG could hold an open meeting to discuss and explore how such advice might be better communicated to pregnant women. Or use some of its reserves to produce simple and evidence-based health advice literature that every mum-to-be receives plus another one for new mums that they would get with their first free pampers. The point is it needs to learn from this and show that it has learnt from it.

However, I am not going to let my PR colleagues get away without bearing some of the responsibility.

I am reminded of the fact that just a few weeks ago I chaired an ‘Ask for Evidence’ (Sense about Science) meeting at the British Science Communications Conference. It was full of PR officers and comms people discussing how to ensure science stories are supported with good evidence and, where not, how to go about seeking it.

Science communications colleagues must assume greater responsibility for ensuring their organisation has the evidence to support their announcement or story or claim. And to challenge strongly where they believe it is lacking. That may not be easy. But perhaps there is now a case for drawing up a code of ethics for science communications staff if it does not already exist. After all, they are the ones who press ‘Return’ on the news at the end of the day.

Whatever the reasons behind this report seeing light of day it has done no one any favours. A few months ago I was listening to a phone-in on the Jeremy Vine show about diet and, in particular, cooked breakfasts. A lorry driver called in, described his heavy breakfast habit, and said something along the lines of: these men in white coats are always telling you something; you just got to get on with it.

I wonder if we are witnessing a new phenomena – ”white coat fatigue?’

Here is Sense about Science’s comment on the RCOG report:
http://www.senseaboutscience.org/news.php/326/rcog-report-on-chemical-exposures-during-pregnancy

The RCOG report on risks to mums-to-be from unintended exposure to chemicals is here: http://www.rcog.org.uk/news/

Comment: Hawks and doves in medical research 1

medical research

The UK’s medical research economy is biased towards funding work that is essentially about finding cures.

Being an essentially altruistic society we respond accordingly as a population. This summer many of us will do all manner of activities to raise money for a cure. Research is a runner, in every sense!

But, of the money raised for research through these donations and our taxes, only something like 6% will go towards things like disease management or quality of life issues for patients.* It is probably less than this if you take out some of the funding for things like health systems research.

Given the time and opportunity to consider such details in more depth, fellow citizens begin to challenge the bias in our research economy. Yes,,one of the most common questions I get asked at public meetings is: why isn’t more money spent on research to improve the quality of life for patients? A good question indeed.

It can feel that our medical research economy is fuelled by ‘test-tosterone’ as much as anything else sometimes. This was brought home to me by a rather telling tweet I saw on Friday. It asked if someone could confirm whether the new ‘Crick’ biomedical research centre in London would be the largest of its type under one roof in Europe. It was indeed from ‘The Crick’ as you might have guessed. Does it, should it, really matter I thought?

The consensus among research funders is typically hawkish and hard-line when it comes to the word ‘medical.’ I recall being utterly perplexed when, as CEO of the AMRC, my suggestion that we talk more about ‘health’ research – or even refer to ‘social care’ as part of our mission – was flatly turned down. Silly me I thought, I forgot that we are in a war on want not need.

That was in 2006 and there has been a bit of relenting since. Yet lab scientists still dominated the list of research signatories to AMRC’s excellent letter in Saturday’s Daily Telegraph. This called on the Government to do more to support research charities through the Charity Research Support Fund (CRSF).

Yep, the hawks are very much in power when it comes to deciding where the money should go my poor doves. And dementia is a good example of what we are in danger of overlooking as a result.

We admonish ourselves for the lack of progress in discovering viable treatments over the last 20 years. But actually, just as troublesome, is that there has not been the step change in how we care for people with dementia in that time either. Too many people continue to end their days institutionalised, pumped full of anti-psychotics and ‘taken care of’ by poorly trained staff. It is taking a Prime Minister’s challenge to bring us to our senses.

Fact is, you can have a hard time living with disease in the UK. You can also, have a hard time dying from it too. Such is our obsession – our hyped-up expectation – that we will be able to treat ourselves out of existence.

Public involvement gurus often focus on how we have or have not changed the research process to assess our success as reformers. But the real failure we need to confront – and it is a failure – is that we have not influenced a greater change in the portfolio of research funded in the UK so that it is more aligned with patient needs.

The advent of tools such as the James Lind Alliance PSPs will make an increasing difference particularly to the approach funders such as NIHR. But we have a long way to go yet.

We must throw down the gauntlet to our hawks.

*UKCRC Health Research Analysis 2013

NIHR announces local opportunities for public to shape Research for Patient Benefit Reply

medical research • Tags: , , ,

If this reads like an advert then I apologise but that’s what it is.  But it seems a good advert to pass on from the NIHR Central Commissioning Facility (CCF).

The NIHR Research for Patient Benefit (RfPB) Programme needs one public member for each of six Regional Advisory Committees. The committees meet three times a year to discuss and decide which research applications the programme should be recommending for funding. Members of the public take a full committee role for which they receive expenses and attendance fee and have the key task of providing a patient and public perspective in the research assessment processes. There are up to three patient and public members on each committee, fully supported in their role by the patient and public involvement team and their programme managers. In order to be eligible for consideration, you must live in the relevant region. The vacancies are in:

East of England (must be resident in Norfolk, Suffolk, Cambridgeshire, Bedfordshire, Hertfordshire or Essex).

East Midlands (must be resident in Lincolnshire, Derbyshire, Nottinghamshire, Leicestershire or Northamptonshire).

North East (must be resident in Northumberland, Tyne and Wear or Durham).

North West (must be resident in Cumbria, Lancashire, Merseyside, Cheshire or Greater Manchester).

South Central (must be resident in Buckinghamshire, Oxfordshire, Berkshire or Hampshire).

Yorkshire and The Humber (must be resident in Yorkshire).

The recruitment process involves an application form and a face to face (friendly) interview in their region. You do need committee experience and some facility with managing large amounts of information before a committee meeting, and this is explained in the information about applying which is all on the NIHR CCF/ppi website: Pages – GetInvolved.

Application Deadline is 26th June 2013 for East of England, East Midlands and Yorkshire and The Humber. For North East, North West and South Central the Application Deadline is 5th August 2013.

If you have any further queries please contact:

Patient and Public Involvement team,

CCF, Grange House, 15 Church Street, Twickenham TW1 3NL

Email: ppi@nihr-ccf.org.uk

Telephone: 020 8843 8042 or 020 8843 8071

Health Research Authority (HRA) publishes its first annual review Reply

medical research • Tags: , ,

It’s no secret that I think the Health Research Authority (HRA) has been doing the right things in the right way since its establishment.  Today, a colleague drew my attention to its recently published annual review (see the first of the named publications on its home page).  It gives a good account of itself as you would expect.

Normally the publication of an annual review is not a notable event.  But this is its first. It gives a good summary of some key activities.  And, to be honest, that it includes public involvement is a marker that this issue will be part of its annual reporting (an excellent bit of good practice!).

The transparency debaters will want to note its section on transparency. Public involvement colleagues will be interested in its statement that it will publish its ‘involvement strategy’ during the summer.  Also that it will establish a citizens panel in due course although I am less fussed about that – in fact the danger of these forums is that they can close down dialogue rather than open up issues for wider discussion.

Good graphics at the end of the report as well which show the amount of activity going through research ethics committees.  It is a lot more than you think.

 

 

Diagnostic opportunity for patients and the public Reply

medical research • Tags: , , , , , ,

Sharing this on the basis that otherwise it may not get a viewing outside the usual circles…. but it is on the Department of Health website. 

The Department of Health has today announced £4 million to improve diagnosis for millions of patients with a range of conditions. Put simply, we don’t have enough good evidence about the diagnostic tests which work on patients and why; nor do we have a very robust approach to the methodology for gathering this evidence.

So the four Diagnostic Evidence Co-operatives (DECs) announced today will enable us to get better at both.  They will be based in London, Leeds, Newcastle and Oxford.  Conditions covered (depending on the centre) include: cancer, cardiovascular and stroke, musculoskeletal, liver, renal and infectious diseases.    The Oxford one will also be looking at the use of diagnostic tests in primary care and ‘at home’ settings, reflecting the fact that more medicine is being delivered close to home

As with all NIHR initiatives the application process will have included a review of the applicants’ approach to public involvement.  This is an arena in which the research partnership with patients and the public can be very rich indeed, in using patient insight to develop tests that accommodate people’s lives and disease experience rather than expecting it to be the other way around.

 

1-HELP-CUREIT Reply

medical research • Tags: , , , , , , , , , ,

It was so humid when I stepped onto the sidewalk it felt like I was treading water. A threat of storms hung in the air, battleship colour clouds steaming slowly across the horizon. Far from here but menacing nonetheless.  An occasional spot of rain found its way on to the floor; a steady hum of a/c units was never far away- contented hives.

Taxis cleared their throats like Uncle Sam on his porch as they lumbered away from the side-walk. An occasional police car whooped its siren to move along a throng of other waiting cars. Porters hovered – there is always someone ready to help you in the US.

I had forgotten what it was like to arrive in an American city in the summer. How every sense is conquered.

Looking up I saw the signs asking us to join American Airlines in supporting the American Cancer Society in its 100th anniversary year. I remembered the interview in the in-flight magazine – between the CEOs of the two organisations.  It had a strong message of hope for cancer patients; particularly the graphic showing the percentage of people surfing cancer compared to 30 years ago. Research was key they said. But at the same time I couldn’t help ruminate how like business major charities and foundations have become in their ‘speak.’

As I sat in the back of the cab, Prince’s 1999 gave way to adverts on the radio. The first called for young male volunteers for a clinical trial being run at the hospital; reimbursement was possible it said. But, in reality, in tone and style it sounded no different to the next which was announcing a bargain sale if sofas. Or the next, advertising places at the local school. The cabbie himself had a small sign on his back seat asking us to support diabetes research? I saw a girl playing in the street and wondered if he had a daughter with diabetes and that’s why he was asking. I should have mentioned it.

Billboards and advertising hoardings buffeted and stretched for mile upon mile like one of their great freight trains. On each Freephone numbers spell out what they will say to you say on the phone. So an injury claims company’s number to call is: 1-800-HURT. I love that.

As the freeway rose on stilts heading into downtown, it curved around the new university hospital complex. ‘Health Sciences Centre’ said the sign on one of the tallest buildings and in letters the size of a small house.

Here’s a country not shy of talking about its science I thought.

Labs of shame – the organisations wanting patients on the cheap 2

medical research

It makes my blood boil. It really does. And at the moment my blood is forever boiling.

The object of my anger – the growing number of organisations who herald their patient credentials but refuse to pay to help make it happen.

More specifically those who won’t pay people’s travel expenses, reimburse them for their time or even help them with booking their travel or accommodation.

The upshot is that the faces these organisations will see around the table with them will be the arguably ‘safe’ and institutionalised patient voice. They certainly have a story to tell but not the whole story. Or they will be people like me, white, make middle class and able to make the choice to pay or not.

I’ll save these organisations their blushes today and won’t name them . But I am thinking of starting a ‘name and shame’ sidebar to my blog.

Its things like the trade association that won’t pay a rail fare for someone that is less than a decent evening meal. The other association who say they really don’t have the time and money to process expense claims for patients.( i know, it must be hard when its one person attending two meetings a year). The colleague who can’t find anyone to cover his expenses to attend a cancer conference. The new organisation that point blank refuses to shift from a no-pay policy made by someone higher up. Much higher up!!

I accept that occasionally it can be due to over-zealousness by employees in interpreting a policy. Some time ago I was tangentially involved in sorting out an issue where an organisation had said they wouldn’t send people hard copies of documents anymore. Have they ever tried to print off a bid document for a programme grant? Anyway we got it sorted and it was due to someone passing down a diktat without thinking.

But I think what upsets me most is those occasions where staff – and quite senior staff at that – don’t just say ‘this is wrong and we will ignore it, we will reimburse people because it is the right thing to do.’ But, no, austerity has brought out the worse in these places, decisions are now about what can or can not be afforded, not about what the right thing to do is?

When I worked for Procter & Gamble it’s then CEO, John Pepper, introduced a series of principles called the ‘Boa Principles’ I think. Business intelligence is a big thing with many unscrupulous practices. The Boa Principles are in essence a statement that P&G employees wouldn’t play this game. So, if you came across sensitive Information on your travels you didn’t use it and/or you made clear who you were.

That’s the sort of principle we should be fighting for in these places. Pay up or don’t take the patient’s name in vein

An Open Letter to the 15 Chairs of the AHSNs Reply

medical research

Dear Colleagues,

I understand that you have just received your letters from the Department of Health confirming your designation as an Academic Health Science Network (AHSNs) subject, no doubt, to a few refinements. Congratulations.

Me and my colleagues from across the world of public involvement are looking forward to working with you to get innovations out to patients and the public more quickly and efficiently.

In making this happen, we hope that the AHSNs – independently and collectively – will embrace public involvement as a core principle for the way they operate and from the beginning – as the National Institute for Health Research (NIHR) has done so successfully since 2004/5.

From a strategic point of view – and based on our experience – public involvement is an essential partner in delivering:

- accountability to your community and air cover for what you do
- value in ensuring that the work you undertake fits with the needs of your population
-efficiency, not least in making you more effective in engaging the public and getting them to take part in what you are doing
- innovations that actually work for patients and carers in hospital and at home not just in the lab

In the current climate and amid the concern to ensure a more accountable health system it would seem logical to embrace a partner – the citizen – who can help make this happen. If I am honest many patients and public I talk to think that AHSN will be another of those great British academic carve-ups. Indeed, often it is the institutionalisation of innovation and not our NHS that holds up progress of patient benefit. So it would be great to prove us wrong.

The wonderful thing – and you will appreciate this given that innovation is often about smart adaption of what exists to fit a new context – is that you have a wealth of public involvement experience to lean on. Not just in NIHR but in our clinical research networks, CLAHRCs and many patient groups as well. We don’t just know how to do this stuff, we actually know how to do it very effectively and this is why it is getting increasing attention from abroad. We know that we can make a real difference in the AHSNs as well.

For the last few weeks up until yesterday, I and many others have been working on the ‘Ok to ask’ campaign for International Clinical Trials Day (ICTD). Over 200 hospitals took part with many inspiring and exciting examples of people coming forward to take part in research but also being innovators in their own right. From children to old people, the desire is there to help they just need to be asked. So I know you will want to be at the forefront of what we do next year.

Finally, a small but important point. Few people will know of your existence in your area. The very term AHSN does not lend itself to dialogue except perhaps between its collaborators. Perhaps Networks can begin to demonstrate their ability to think out of the box by calling themselves something that is not an acronym,that will resonate with people.

I can’t wait to get started with you.

Best wishes,

Simon

Clinical research? It’s a people thing. 2

medical research

I can’t do policy or politics today. Sorry.

Wherever you are and whatever you are doing for International Clinical Trials Day (ICTD) and NIHR’s ‘Ok to ask’ campaign I hope it is going well.

For me, it has been all about the people I have met over the past week.

76 year old Anne, diabetic and badly disabled, who I chatted to over lunch at a dementia conference in Bristol. She decided to go the event because friend and neighbour has dementia and she thought it would be good to find out more about it. I think she might have been flirting with me when she invited me to her care workers birthday party.

Elaine who shared the green room with me at the radio studio on Friday morning. Elaine is in remission from breast cancer and told listeners up and down the UK about her positive experiences of being on a drug trial. I hope her Trust does the right thing and grants her wish of becoming a research champion volunteer.

Susan Moore who stole the show at the
Central Manchester Foundation Trust public event ‘Showcasing Medical Research.’ Susan is Chair of the research user group for the musculoskeletal work being done there and I can see why she is so highly valued by her colleagues. Professor Ian Bruce similarly gave a model example of how to talk about research to a mixed audience.

And the many clinical research nurses (CRNs) who contacted me after their annual conference last week with ideas and issues they are committed to help sort out with patients. Really, how long until we properly recognise how pivotal CRNs are to involving patients and the public?

Not to mention, the tweets, pictures, events, media stuff (watch out for Dame Sally on the 6pm BBC news by the way) and much, much more.

Clinical research. It’s definitely a people thing.

CCGs, Healthwatch, put research on your agenda for Intl Clinical Trials Day (20 May 2013) #nihroktoask Reply

medical research

Good morning.  There is one week to go before International Clinical Trials Day on 20 May.  NIHR’s ‘Ok to ask’ campaign is off to a flying start with 150 hospitals already signed-up to take part.  Remember, you can find out more details on the ‘Ok to ask’ website.

A number of Clinical Commissioning Groups and Healthwatch organisations have been in touch to ask: ‘what can we do?’  Well, I hope they will join forces and support their local research networks or NHS Trusts in events they already have planned would seem an excellent idea.

But there is another important way in which you can mark International Clinical Trials Day and help improve the opportunities for patients to take part in clinical research.  All NHS organisations have new duties to promote and advance research under the Health and Social Care Act 2012.  Many have only just begun to grapple with what this means and how to fulfil them.  That’s understandable given the major changes that have just happened.

So, how about making sure there is a 15 minute item on the agenda for your next CCG or Healthwatch meeting entitled ‘Improving patient choice in research.’  Don’t even worry about having a paper written for it.  Why not just have a roundtable discussion about what this means for the Board and how it might take things forward with other partners including patients and the public.

A next step might then be to have a paper written setting out a strategy.  By putting it on the agenda you will be beginning to set the future agenda for research in your area. Think of it as research’s 15 minutes of fame but with reprints for years to come…..

Time for a chat I think! Intl Clinical Trials Day, 20 May: ‘Ok to ask.’ Reply

International Clinical Trials Day, medical research, Ok to ask

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NIHR is heading-up a campaign for International Clinical Trials Day (ICTD) on 20th May entitled ‘Ok to ask.’ Its aim is to empower more patients to talk to their doctor about research.

I happen to be writing this from Bergen in Norway where I am speaking at the Nordic Health Research and Innovation Conference later today.

The chiseled coastline here is known for fjords and its numerous small islands; frozen tears tumbling down granite cheeks. Over dinner last night, two of my fellow delegates – both clinical research nurses – told me about the arduous island-hopping journeys made by cancer patients to be part of a gynaecological trial. Not just occasionally, but every three weeks, motivated by a desire to improve the prognosis for all women.

Give or take the odd ferry there is not a world of difference between this ‘journey’ and that made by hundreds of thousands of patients in the UK who are taking part in clinical research this year (well, have you ever tried changing trains at Crewe?). Nor the fact that, for most people who participate in research, the opportunity only arises because of a conversation with a confident and well-informed doctor, nurse or health professional.

We need to get better at helping these conversations take place in our surgeries and hospitals up and down the country and increase the number of people in research studies. That’s why this year’s International Clinical Trials Day (ICTD) ‘Ok to ask’ campaign is so important. It’s the only national campaign for ICTD ever to have taken place around the world that I’m aware of and, I’m delighted NIHR is leading it.

‘Ok to ask’ is about empowering patients to ask their doctor about clinical research relevant to their care and treatment which they might take part in. It’s also about saying to doctors that it’s more than ‘Ok to ask’ patients about being in research. In fact, most people would like to be approached about opportunities as the results of last year’s National Cancer Patients’ Experience Survey (NCPE) showed.

Whether you are a patient, carer, doctor, nurse, researcher, charity CEO or interested member of the public, there’s many ways in which you can support the campaign. Just visit the NIHR CRN ‘Ok to ask’ website. And whether you are an NHS Trust, patient group or research team there are loads of materials to help support your conversation with patients.

Listening to the conference debate here this afternoon the prevailing opinion seems to be that Nordic clinical research is as becalmed as the small rowing boats on the fjord outside. I think they are being hard on themselves. But it is the sort of discussion we would have had in the UK five or six years ago. Not so now. Our own clinical research networks are the engine by which we are delivering every greater opportunities for patient’s to be part of research. Over 500,000 patients took part in research in the UK last year. By doing so they are helping to improve the quality of our health services in the future.

It all begins with a conversation. So let’s make it a national one.

http://www.crncc.nihr.ac.uk/oktoask

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The UK has a lorra lorra data and this is how it’s handling it in medical research Reply

Big Data, health informatics, patient data • Tags: , , , , , , , , , , , , , , , , ,

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……

 

Now this is good, very good. The Cystic Fibrosis Trust has a transparent new research strategy Reply

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The Cystic Fibrosis (CF) Trust launched its new five-year research strategy in London yesterday.  I have to say I am highly impressed.  In terms of content and dissemination they seem to have single-handedly shown the rest of the medical research charity sector how to embrace the future as a funder and a patient group.

Why is it so good?  Well, the research strategy is clear and visionary.  It seems to strike the right balance between basic research and clinical research.  But it’s more than that for me.  Most important is the firm commitment to ‘Enhancing the involvement of people with cystic fibrosis in shaping research’  as one of its three enabling piorities.  I also like their very simple but effective ‘SCORE’  approach to evaluating potential research ideas to fund. It’s about time more charities came out with similar focus and simple creativity.

I’m also pleased that CF Trust’s new approach to research is available to a wider audience using Cystic Fibrosis Unite among other devices. As I found out after I did the first (perhaps exciteable!) version of this blog CFUnite is independent of the CF Trust and funded by a Wellcome Trust People Award. But my excitement is not totally unfounded.

I love the fact that CF Unite embraces and pulls in all possible partners in making research happen – you really do want to be part of the enterprise.  On the CFUnite site you can register your interest to help design and take part in clinical studies.  And you can email them if you want to find out the results of relevant trials.  This is just the sort of thing we should be doing in the name of transparency and in the public interest.  You can find all these features here.

CF Trust complements this with its own cross-referencing and linking to CF Unite but also by giving people information on clinical trials taking place in the UK.  This is a facility that it has made available for some time and shows its long-term commitment to making sure this sort of information is in the public domain.

Its a worthy package that has made my day.

Bold ambition for lung cancer research just what the doctor ordered Reply

medical research • Tags: , , , , , , , , , , ,

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.