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.

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

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

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.

Yesterday the Health Research Authority (HRA) published its plans for promoting transparency around publication of health research findings.  Of particular note from a public and patient perspective is its proposal to:

‘set standards and issue guidance for how those that have participated in research are appropriately informed of individual outcomes and study results at the end.’

The HRAs move follows months of debate on the issue of transparency. A House of Commons Science and Technology Select Committee appearance beckons for them tomorrow morning (as it does me).  Its plan marks the end of the beginning in the campaign for greater openness spearheaded by AllTrials. It is important that we support HRA as it tackles the implementation of its recommendations.

I hope people will take time to study Appendix 6 of the document released by HRA yesterday.  This contains a summary of the public dialogue exercise it has carried out over the last few months.  It shows that the public and patients care about publication of research findings.  In fact, they care a lot.  As one participant is quoted as saying:

‘Research should all be published: because that would be the right ethical thing to do.’

And they have a great deal to say on how best to report the results of research studies to participants in an accessible and sensitive manner.

Yesterday I met a colleague who was telling me how the European Medicines Agency (EMA) has completely fouled up its own process for dealing with the transparency issue.  You may recall that it set up six working groups to look at different issues and made an ‘open call’ for group members.  But, as I understand it, EMA put so many parameters on who the groups’  ’public’ members should be, that it defeated the purpose of having them.  What with this and the recent European Court judgement in favour of two pharma companies; one can only muse on the irony that the forces of opaqueness should find new friends in those places they have roundly criticised for many years for holding back progress.

Anyway, three cheers for the HRA.  At last a regulator that doesn’t mumble or bumble but is clear about the future.

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…..

Over the last two days I have been caught in a couple of discussions about definitions and terminology in public involvement. Caught is an apt term. Like bugs in a web, you can see the participants in such discussions struggle violently to begin with. Then, before long, they submit totally to their fate which is to be forever entangled. Or gobbled up by the word police.

It is such a shame. I was brought up to believe that language sets us free. And, here we are, feeling bound and tied to an uncertain and probably bleak future by our inability to find the right words.

But that is the problem. I think we are looking to words to do too much for us. They should enable, empower, enable us to communicate and be understood. However, we must do the rest.

But in public involvement I am afraid we are reaching the point where we are allowing words to be so controlling of our thoughts and those of others that they are approaching dogma. Is that what we really want?

My English teacher used to say that you have to know the rules to break the rules. So, I respect the different definitions of involvement, participation, engagement or whatever. But I refuse to lie down in front of, or be bound by, them. In fact half the fun is pulling them apart and putting them back together in different ways. And the context in which we are doing this is always changing which is why a spade will not always be a spade however much we would like it to be.

Like the writer or poet our task is to find better stories to tell that resonate and describe what it is we are doing and make people want to write their own chapter.

In similar vein, i totally get things like ‘the ladder of public engagement.’ In fact I enjoy these things and often find them helpful. But I’ll be damned if I am going to test everything I do by them and throw the things out which don’t quite match. In fact I have often walked under them and survived. And I am sure their authors would want me too.

Anyway, where there’s a ladder isn’t there more often than not a snake as well?

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

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……

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.