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“I thought, if nothing else comes out of this, I might be of service to other people” – ‘The Big C,’ NPR and clinical trials talk

Deutsch: Laura Linney während der Eröffnungsfe...
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To begin with, this blog was going to be about the portrayal of clinical trials in popular drama,  inspired by the current US show ‘The Big C.’

The latest episode runs on More4 tonight at 10pm.  If you haven’t seen it, then I strongly recommend a viewing. It is well-written, honest – to the point of sassy at times – and funny.

It’s one of those shows that highlights the general failure of our tv companies here to commission home-grown drama that doesn’t look like Eas(pre)tenders, a Chicheley Hall period costume drama or a ‘cops and robbers’ series.

‘Casualty’ is an exception that I will not countenance a bad word against. I should also add that, to be fair, our UK soap operas used to be quite good at including story lines about particular conditions as well as consulting charities and patient groups to ‘get it right.’  Whether they do now is something I really don’t know?  Perhaps someone from a charity might like to comment?

‘The Big C’ is about more than cancer in so many ways.  For instance, I read an interview with the star, Laura Linney, in which she said that the show was also about time and how we use it.  You might also be interested in this interview with Laura and the exec producers where they discuss the show’s themes and the audience response. Nonetheless, cancer is the main reason that bonds the characters and viewers together.  And, in this series, Cathy has been accepted onto a clinical trial. I shall say no more than that.

Anyway, as I say, my blog was going to be about how these sorts of shows can be so important in helping bring to the public consciousness issues such as clinical trials.  Then I decided against it on the grounds that it might be better to leave it to an academic.  Or, rather, I didn’t want to deny an academic a shot at doing a high-impact paper on it because I had ‘stolen the show’ so to speak.

Also, unlike the best research which is about seeking answers to questions,in my case it would only have been to construct evidence in support of a pre-supposed conclusion.  This being that Americans are perhaps beginning to have a better and more open conversation about clinical trials than we are in the UK.  Discuss.

Exhibit two in my argument would have been this rather good interview with journalist, Mary

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Elizabeth Williams, and phone-in about clinical trials with patients that appeared on NPR in the United States just a few days ago.  I do miss NPR from my time in the States.  For those who haven’t heard of it, it is a bit like our BBC Radio 4.  Heresy though it might be to say it, it is also sometimes better.  It’s ‘Talk of the Nation’ programme being a case in point.

The NPR piece is only seventeen minutes long and, if you have problems downloading media files, you can read a transcript of it by following the link above. Obviously this is the experience from the States but the central message is incredibly positive and universal – as in the quote I’ve used for my headline.

But, just to prove I am no propogandist, there’s also a good deal of honesty expressed such as when Elizabeth talks about the difficulties she encountered with one particular clinician.  The same sort of honesty that makes ‘The Big C’ work – for me at least.

Now, I must give Jeremy Vine on BBC Radio 2 a quick call…….

Getting touchy over the information revolution

Over the holidays I caught a BBC Radio 4 item about the days of the touch typist.  It was one of those gems of broadcasting which looked through a narrow lens to tell the listener much about how the world has changed.  It also brought back many memories of my time as a messenger at the old Department of Education delivering brown envelopes – many of them with a red flag meaning it was from the Minister’s office – to the typing pool.  About the same time my Dad (who was a schools inspector) got one of the first computers which sat in the corner of his office at the DofE in Arthur C Clarke fashion.  Indeed, I am not too sure who was more afraid of it – him or me.

Since then there has been an ‘information revolution’ of course,  And it just so happens that this is the title of the Department of Health consultation about information use and access in the health service to which AMRC has responded today .  We have made the following key points:

  • Research is central to the information revolution’s aspiration of delivering broad benefits to patients and society through improving access to information.
  • We welcome the government’s ambition that by 2015 “The quality and scope of information available for analysis and research will be considerably higher, more comprehensive and based on accurate recording.” and urge the government to work with us to ensure the information revolution can deliver this
  • Confidentiality and security must be central to the revolution to underpin patient support for the use of their data
  • Issues around the use of identifiable patient information in research must be addressed.
  • We urge that the recommendations of the Data Sharing Review and the ongoing work of the Research Capability Programme and Health Research Support Service be included in this strategy.
  • More focus is needed on informing patients to understand how their data will be used and supporting them to find out about research opportunities open to them.

The truth of the matteris that good information useage and good communication rely on sound leadership from the top – in this case Ministers. 

As we finalised our response this week, the irony was not lost on me that the Department should be seeking views on this issue shortly after a Christmas period in which it was roundly criticised for not pursuing a public information campaign on flu vaccination.  Why is it that, in this information age, all Governments wantonly cut back on communications, marketing and information activities?  Ultimatelyit can only short-change patients. 

I sometimes think that when politicians become Ministers they forget that they have become heads of ‘corporate’ beings.  Good communications is vital to whatever service their Department is delivering.  They neglect it at their peril  – a lesson learnt by most businesses long ago. 

For those wanting to get a grasp of some of the issues around the NHS White Paper ‘Equity and Excellence: Liberating the NHS’ of which the ‘Information Revolution’ is just one aspect, I encourage you to read yesterday’s House of Lords debate.  What would we do without the Upper House I ask myself?

It being the end of the week I should perhaps mention several other interesting bits of news from the last five days…

First, the data sharing agreement announced by the Wellcome Trust and other research funders.

Second, a union of national importance on the scale of William and Kate it may not be, but this week the Association of British Healthcare Industries (ABHI), Association of British Pharmaceutical Industries (ABPI), BioIndustry Association and British In Vitro Diagnostics Association (BIVDA) announced the formation of LifeSciences UK to facilitate joint-working between different parts of the healthcare industry and strengthen their voice with Government.  

And, third, this item about Cancer Research UK setting up a c-team of experts composed of four world-class research groups to launch a new blitz on cancer by targeting rogue stem cells that cause tumours to spread and become untreatable.

That’s it this week from the A-team.

An evening of industry – how the pharma business model is changing

So it’s 10pm and I’m busy here putting the final touches to the AMRC/INVOLVE report of the workshop we held in November which drew together patient views on health research regulation. 

This was at the invitation of the Academy of Medical Sciences as part of their review of regulation and governance but – and all credit to them – we agreed that AMRC/INVOLVE will produce its own independent report of the event and I hope this will be out before Christmas.

Anyway, that’s just a bit of context for you.  While writing, I listened to an excellent edition of ‘In Business’ entitled ‘Bitter Pills’ looking at changes in the pharmaceutical industry with a focus on GSK.  Its worth a listen if you are interested in how the business model for pharma is changing fast.

Unfinished business – clinical research

There has been much to dwell upon since our workshop for member charities ‘Clinical research – working with NIHR’ a fortnight ago.

This is the fourth workshop on clinical research that AMRC has held in as many years.  Each has attracted more delegates than the one before – a fact indicative of the increasing interest among charities in funding clinical trials and studies.  The main difference now – compared to a decade ago – is that we have a system and infrastructure in place to better support their involvement – the National Institute for Health Research (NIHR).

Nonetheless the meeting emerged with some important issues and questions for the future.

Such has been the pace and scale of the changes that have happened under the auspices of NIHR that the ‘how to’ question regularly cropped up in conversation.  NIHR is necessarily a sum of its parts but it is n0t always clear how these parts fit together and relate to one another.  Our members are no different to other funders in needing a journey planner as well as a route planner to help guide them through the complexities.

So, the new National Office for Clinical Research Infrastructure (NOCRI) is an important initiative.  I am pleased that AMRC will be meeting with them in a few short weeks to discuss how they can improve engagement with medical research charities and provide a one-stop shop for guidance and advice.

Since I wrote ‘Not another article about partnership‘ on this site last August and expressed irritation with the system by which NIHR partnership status is awarded (or not) to funders, the Department for Health has instigated a review.  The questions on this topic at the workshop were, therefore, a timely reminder of the need for consistency and transparency in how such decisions are made.

I continue to be concerned that we do not do nearly enough to support research into rare disorders in the UK and this came out in the meeting.  While I can understand the interest in ‘scale’ – i.e. supporting those studies that are based around large patient populations – I sense a growing frustration among member charities who represent people and families coping with rare conditions.

Quite simply they feel that their agenda is being overlooked and I agree with them.  I have blogged before (‘Research of rare quality’ – 7th Sept 2009) on this topic and I hope that AMRC’s seminar in April for rare disorder charities will be an opportunity for this important group plus their colleagues in the sector to rally around some key research issues that we can press together, and press hard.

‘Who pays?’ – whether the charity funder or NHS – in supporting different aspects of supporting clinical has always been a difficult and intricate issue.

New guidance is expected shortly from the Department of Health.  It is intended to clarify existing rules and AMRC, together with a number of member charities, will be meeting with other funders and officials next week to understand better its implications; also to encourage an approach to its implementation and communication which reflects the fundamental contribution of charities to the future of clinical research in the UK.   If we are not to disincentivise some charity funding in this area it is important that this is got right and that potential issues are worked through sooner rather than later.

Yesterday you may have heard the excellent ‘Today‘ programme item about the publication of the MND Association’s manifesto ‘Make MND matter at the General Election.’  Take a look.  It will leave you in no doubt as to the rising sensitivies among charities about ‘bureaucracy and regulatory burdens’ standing in the way of appropriate use of charitable funds.

For, at the end of the day, our first responsibility must always be to our beneficiaries, donors and supporters.  It lies at the root of the sector’s interest in clinical research. It will be the test by which we must always determine our future  involvement.

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