health

Science historian and Guardian science blogger, Vanessa Heggie (@HPS_Vanessa) has written a fascinating piece about how AIDS activists among others changed the way we run clinical trials and persuaded researchers to adopt new methods.

That’s certainly the history lesson passed down to me as Chair of INVOLVE by previous members.  They will tell you that, before we ever talked about definitions, standards, impact or, rather bizarrely ‘what is a patient?’ it was protest and a sense of injustice that drove patients to clamour for change and hammer on closed doors.  They will also tell you that our very own Medical Research Council (MRC) was one of the organisations with doors firmly closed and drawbridge raised.

This year, the MRC has been celebrating its 100th birthday.  Like every centenarian it will have got a telegram from the Queen saying:

“I am so pleased to know that you are celebrating your one hundredth birthday this year.  I send my congratulations and best wishes to you on such a special occasion.”

If I were President I would add a ‘PS:’  But you need to do more public involvement if you want another telegram plus some birthday money next time.

The MRC is a curious organisation when it comes to public involvement.  I am in touch with a great many MRC  colleagues whose commitment to it is palpable.  As I go around the country, patient and public friends are often fulsome in their praise of MRC trials, how they have been run and how they were treated as participants.  In October, the MRC Clinical Trials Unit, – a world-class centre of research excellence – held a workshop to discuss how to strengthen public involvement in clinical trials in the future.  It is important that we support and encourage such activities in order for them to grow.

But, step closer to its HQ, and things become that bit more hazy.  In fact, befuddlement might be the best word to describe its corporate response.  Imagine people coughing and shuffling papers on their desk when asked a difficult question and you have it about right.  Fact is, they just don’t get public involvement or perhaps even ‘the public.’

The disjointedness between this corporate persona and its more streetwise operational self hit home to me when I viewed their new 2014-2019 strategy ‘Research changes lives.’

This document was published last week. The second of its strategic aims is entitled ‘Research to people’ and this has three objectives including one on ‘Engagement: To enhance engagement and communication with our scientists and partners, policy-makers and parliamentarians, and the public.’  What that means to the cynical part of me is that the MRC remains wedded to the notion of talking ‘to,’ if not ‘at,’ the public rather than taking a more courageous step to involve them in its decision-making.

The MRC has struggled with the notion that people who are not scientists might have something useful to contribute for as long as I care to remember.  When I became chief executive at the Association of Medical Research Charities (AMRC) and met its then chief executive, Professor Colin Blakemore, it was clear that engagement was the thing.  That meant raising public awareness and understanding.  No more, and no less. Professor Blakemore did awareness raising – and does it – very well indeed and he should be applauded for it.  It has never really moved from this position since.

I did experience a glimmer of hope some time ago when it was going through a revamp of its committees.  But, alas, I was to be disappointed.  Its Ethics, regulation and public involvement committee contains many ‘good eggs’ who I admire greatly. But they do not constitute a patient and public forum who could inform and shape the MRC’s decisions and work based upon people’s lived experience of research – whether as participants or interested members of the public.

The thing is, like many old institutions with cultures stronger than their constitutions, the MRC is a good egg that simply likes its ‘good eggs.’  It is attracted to status and titles.  And that means neither you nor I, I suspect.  So while its doors may be ajar compared to two decades ago, they are also wooden and heavy and cumbersome.  That means they are likely to spring back and do you and I an injury at any moment.

That’s a shame because it overshadows the excellent public involvement work being hatched ‘out there’ by MRC staff in their respective field.  They’re the ‘good eggs’ in my book.

Community-based Participatory Research: Unlocking the potential – 25th September in Bristol, 14.30-16.00.

Dr Ann-Gel Palermo is an experienced community activist researcher, involved with numerous organisations, local and federal committees in the USA concerned with public health and health disparities. She is chair of the Harlem Community & Academic Partnership (HCAP) which is a New York based partnership of community residents and representatives from community based, public health and academic organisations, with a community-driven and action-oriented approach to health research and health policy based on the social determinants of health. A seasoned community partner, Ann-Gel believes that community partners are uniquely positioned to enhance research work and to do it well.

Expect to hear about Ann-Gel’s work, engage in a discussion about CBPR and share ideas, questions and experiences of CBPR in the context of community-academic partnerships.

The free workshop is open to all, and is particularly relevant to health professionals, academics, community based organisations, students and volunteers who are interested in the role of CBPR, and how it can be effective in addressing social issues.

Details of Dr Ann-Gel Palermo’s event and the booking form are here

You know how the story goes.  Cancer is way ahead of other conditions when it comes to patients having the opportunity to participate in clinical research.  But there’s still lots of room for improvement.

Today NHS England has announced the results of the annual National Cancer Patient Experience Survey.  Almost 70,000 patients took part in the 2013 survey.  And for the second year running it includes the results of people’s responses to questions about access to, and participation in research.  It is therefore becoming an important tracker of how this aspect of the patient experience in the NHS is changing.

This year’s survey includes a new question about whether people have seen information about research in their hospital.  It really is good news that 85% said they had and only 15% had not (I am not going to deal much with regional or local variations today but I invite someone to compare individual Trust survey results against those for recruitment as published by the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC).  Perhaps a patient-friendly ‘access map’ is called for?

Disappointingly only 32% of patients said they had had a discussion about research with a clinician or health professional, 68% had not.  This is more or less the same result as last year and suggests ‘patient choice’ to take part in research is struggling to get a lift nationally.  However, it is worth adding that the survey was conducted prior to the ‘Ok to ask’ campaign this year and a number of other local and national initiatives.

Yet, look a bit deeper and the variations are massive across from Trust to Trust (from 11% to 62%).  Reflecting on this and some of the feedback on our ‘Ok to ask’ campaign in May 2013 I would hazard a guess that more focus needs to be given to helping health professionals have these conversations and feel able to signpost patients and families in the right direction.

Finally, 64% of people went on to take part in research and 36% did not.  But again the variations are significant from Trust to Trust – from 37% to 94%.  Overall though, this result mirrors other evidence about the way people are positively disposed to taking part in research given the chance.

The report does not contain any discussion of possible reasons for the above results and perhaps this will be forthcoming although I am disheartened by the fact that I could see no reference to research in the Foreword to the report.

Much food for thought and I would welcome views…

We have had two pieces of good news about health research of patient benefit this week.

First, the National Institute for Health and Care Excellence (NICE) issued new guidance saying that tamoxifen or raloxifene taken daily for five years can cut breast cancer risk by 40%.  This means women at risk of developing breast cancer have a choice other than mastectomy. There is a good BBC news piece here if you are interested.

Then, this morning, the Chief Medical Officer Professor Dame Sally Davies told BBC 4′ s ‘Today’ programme that the government will be putting new regulations in front of parliament later this year that would give the go-ahead for what is called ‘three-person IVF’ to enable children to be born without genetically inherited mitochondrial disease.  Parliament is to be given a free vote when the legislation comes before it.  Ian Semple’s article in The Guardian today is a good summary.

Both are extremely important announcements.  Each has been accompanied by debate in our media about the pros and cons.  I am sure this will continue.  But more significant are the decisions these will enable families to take where, in the past, there has been little if no choice.  I can only imagine the sense of empowerment that brings.  However, we must be sure that people have the full facts and information in front of them when considering their options. Whatever their decision, they must also feel that their choice and the reasons underpinning it are respected by professionals, colleagues and friends.

In my opinion these feel like well-informed announcements from a patient perspective, developments that the public should have confidence in.

Quite apart from the fact that NICE’s decision is based on evidence from large-scale clinical trials involving thousands of women, you may wish to have a look on their web pages at how they reached their decision.  As with all its guidelines there was an extensive period of evidence gathering and consultation.  And it is worth mentioning that the Clinical Guidelines Group (CDG) that took looked in detail at this included three patients/carers among its membership.

In terms of the ‘three-person IVF’ move, this has been pre-dated by months of debate including an extensive public dialogue exercise run by the relevant regulator, the Human Fertilisation and Embryo Authority (HFEA).  You can see the results of this exercise led by Sciencewise and also the recommendations made by HFEA to the Department of Health here.  No, it didn’t say that everyone supported the idea.  But in what I thought was a very well framed document, it said that the overwhelming opinion to emerge understood the benefits from a societal and patient perspective.  And on this basis that such procedures could and should be licensed.

Seems to me that when asked, and given time, the public are rather good on this issue at blowing away the smoke that others are keen to blow into our eyes.

 

Been meaning to post this for a while and not just because the poster design is going to brighten up my blog pages for a while.

Our Medicines for Children Research Network (MCRN) really has been an exemplar for involving young people in research.  Find something as good across Europe and I will eat my hat.  Its young person’s advisory group are now hosting a conference of their own – with the support of the Garfield Weston Foundation and the Centre for the Developing Brain, and Generation R – Trust and at the Science Museum on 11th September 2013.  Further details on the poster repos below (sorry can’t make them larger) but this link will also enable you to register your interest in going.

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