Blog: We have the public to thank for this week’s well-informed decisions in health research

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.

 

Comment: The Sherpa’s story and its relevance to public involvement in health research

I am indebted to a good friend and colleague of mine who, some time ago, sent me this BBC News story from last year.  It reports on the rising concerns among Himalayan Sherpas about the lack of regard being shown towards their needs and the environment as scientists tromp all over the local geography.  To the extent that they are threatening to withdraw their labour.

I used it last week for an NIHR talk.  I read out extracts to the assembled post-lunch audience (yes, I care that much about my audience that I don’t like to work them too hard after lunch).  Before I did so, I asked them to substitute every mention of Sherpa with ‘patient’ and every mention of a geographical place with ‘health research’ or ‘NHS.’

I invite you to do the same…It sort of works.  Then ask yourself what would happen if we allowed the same behaviour in health research and what the outcome would be if patients and the public withdrew their labour?  Well, of course, this behaviour does happen all the time and it’s something of a wonder to me that patients don’t object more often.  They should do…and loudly.

Anyway, I like the story and thought I would share it more widely on the blog.  It’s just a different way of getting the message across that public involvement should be a core principle of any health research organisation – funders, journals, Government, universities* blah blah.  For it’s easier to get to the top of ‘Mount Everest’ if patients and researchers work in partnership.  We are also more likely to climb the mountain that matters to ourselves and our fellow human beings if it becomes a joint endeavour.

I mean sometimes I listen to researchers on the radio talking from the top of the mountain they have just climbed and think…what the heck are you looking at from up there?  For what did you climb that tor?  Put your crampons on and get your rope.  I think you’ll Fiennes that the action is over here.

Brief sermon from the mount is now over.  Parting of the oceans will come later when I head into town.

* By the way if you every want a true indicator of how financially troubled our universities are, next time you visit one: count the number of cranes and then count the number of empty rooms, labs etc.  Then do the same every time you go back.  Interesting.

Dilnot presents us all with a second opportunity on long-term care

All hail today’s Dilnot Commission report.

If ever there was a shining – or should I say less than shining – example of the way in which Government has failed its population it is long-term care.

This failure has manifested itself in the difficulties faced by many people in accessing and paying for good quality care. But the real failure, is the way in which all Governments have dodged a proper and open public debate on the issues over the last four decades.

The origins of the long-term debacle can be traced back to the sixties when the then Government (I believe the Minister was Enoch Powell no less) began to close the old hospital nightingale wards with the aim of moving provision into the community. It was the right move but poorly implemented. You could argue that local authorities have been playing catch-up ever since given the lack of resources and backing they have had to take up provision at the level needed.

By the time I arrived at the Alzheimer’s Society in 1992 we were reaching the final chapters of this massive abandonment by the NHS of those with highly complex needs. The postcode lottery was firmly in place and many old people were finding themselves in a quick-sand of bureaucracry and betrayal which was quite literally dragging them into poverty.

That no one told them that this was what waited in store for them, is one of the more shameful aspects of how our modern society has evolved in recent times. Indeed, it took six months for the Society to get NHS authorities to cough-up the figures for the number of beds they had got rid of and only then because we got MPs to approach them on our behalf. Perennial questions to Ministers in the House during this time had simply drawn the answer that ‘this information is not held centrally’…i.e. they didn’t know.

One of the ironies in how matters have unfolded is that, then, we and other campaigners went to great lengths to stress how the growth in long-term care needs was entirely manageable and not the ‘timebomb’ others liked to call it. Of course, twenty years of inaction and prevarication can make a problem a whole lot larger than it ever needed to be.

I wonder if others involved in the issue feel the same. I have a distant memory of going to see a Shadow Health Minister by the name of Alan Milburn around about ’95 or ’96, who put his full support behind our campaign for a Royal Commission into long-term care. When New Labour took office in 1997 it duly set one up.

Two years later the Commission, Chaired by Professor Sir Steward (now Lord) Sutherland, published its report and called for personal care to be provided free with the living costs of providing the necessary accommodation covered from people’s income and savings.

The Labour Government – or rather Gordon Brown – kicked the report into touch finding the costs unpalatable although the decision was driven as much by acute anxiety over its own popularity as so many things were in those days. Nonetheless it shouldn’t shoulder disproportionate blame to its predecessors or successors for exhibiting a lack of political will at a critical moment.

Since then the issue has seemed suspended in mid-air with few daring to touch it.

I have a distant recollection that in the run-up to the General Election the Health spokespeople in each of the political parties got themselves in a right old tangle about a supposed agreement to take an all-party approach on long-term care. First they had, then they hadn’t and then everyone ran for cover the nearer it got to the starting gun. Shame. So I am pleased that 26 charities including the Alzheimer’s Society have today come out challenging the parties to work together to solve the mess we are in.

Today, understandably, the costs of such care dominate our thoughts. But I hope that we do not also lose sight of the fact that this is not just a debate about the cost of the roof under which we are cared for, but about the quality of care that we will actually receive in the future. And that will only improve if we continue to research the needs of people with long-term care needs and the sorts of services that meet them.

Dilnot’s plans for a partneship between state and individual are not that far removed from Lord Sutherland’s own approach in that sense. His report provides us with a second opportunity to have a proper public debate and tackle the issues head-on, a second opportunity that those facing long-term care today do not have .

Willetts at UUK Spring Conference – white paper, postgraduate education etc

The Science Minister, David Willetts MP, has been speaking today at University UK’s Spring Conference (have UUK actually seen the weather out there?).

The full text of his speech is available from the Department for Business, Innovation and Skills website but I was very pleased to see this section in it: 

‘There’s another issue too. We are looking within BIS – in light of changes to undergraduate funding and finance at how we support postgraduate study in future. We have a successful postgraduate sector that has grown substantially over recent years and has done so with comparatively little Government funding or regulation. Many people have raised concerns about the impact that higher graduate contributions could have on participation in postgraduate study – and it would be clearly detrimental to this country if we saw a big fall in postgraduate numbers.

So I have asked Professor Sir Adrian Smith – who, as you know, produced a comprehensive report on postgraduate study in March of last year – to reconvene his review panel and consider this issue in light of the new funding environment.

On research funding, HEFCE has a four-year allocation and should announce institutional allocations for the 2011/12 QR Grant, indicative allocations for HEIF, and teaching allocations on March 16th. Together with other funding bodies, HEFCE will also announce shortly the way forward on the Research Excellence Framework and impact assessment.’

The impact on postgraduate education of changes in the higher education funding is one of the issues that has been raised with me most by AMRC member charities.  Not surprising really when you consider, as an example, the number of new and ongoing postgraduate studentships (approx 700) being funded by them as we speak – they are an important way of bringing new scientists on as well as fostering and supporting important research activity.

As I’m sure you will be aware from the main news headlines about this speech, David Willetts, has announced a delay of the higher education white paper originally slated to be published in March.  This is so the Government can take into account the tuition fees that universities are likely to charge.