Sign-up to help step-up research into dementia: new service enables people to volunteer for research studies #joindementiaresearch @beatdementia

Of all the dementia initiatives announced by the Prime Minister, David Cameron, this weekend it may prove the pivotal one.  It may not grab headlines in the same way as £ commitments to research or new institutes (although it is doing pretty well). But, without it, this expenditure will be worthless.

For other patient populations it will undoubtedly be a model to be copied in galvanising their effort behind similar research of patient benefit.

Fact is, as regular readers of this blog will know, research that could possibly make a difference to health and wellbeing can not happen without the involvement, and in particular the willingness of those people to step forward and volunteer to take part in clinical trials and research studies.  As was amply demonstrated by Fergus Walsh’s excellent Panorama programme a few weeks ago.

Today a new online and telephone service launches to enable people with dementia, carers, family – as well as members of the public wanting to support research – to sign-up to participate in future dementia research. The service also enables researchers to identify potential participants for their studies.

Called JoinDementiaResearch you can access the (mobile friendly) website here: https://www.joindementiaresearch.nihr.ac.uk

The service has been in development for over 2-3 years with people with dementia and their carers fully involved in the design of every aspect.   When the Lay Champions Group began its work all that time ago it is difficult to convey the daunting nature of the task that lay ahead of us or its complexity.  Giving people a safe and secure way of signing up for research in this way has felt like building a skyscraper on a small plot of land in a crowded city.  But the determination was always there and it is in no small part due to the commitment of those champions (many of whom will be speaking to the media today) and also the commitment of the organisations involved, to working in partnership with them,

Today’s  launch follows a pilot in North East London which has already demonstrated its exciting potential to enable studies to get up and running.  I notice that just in the last twent minutes or so that I have been editing this blog another 200 people have signed-up and the total number has just passed 2000.

So, what can I say, other than: JoinDementiaResearch Now!

Have a great day.

Here’s the full news release…..

Ground-breaking new national service empowers public to take part in vital dementia research

A new nationwide online and telephone service that helps people to take part in dementia research studies launches today (24 Feb 2015). Join Dementia Research promises to accelerate the pace of dementia research by allowing people with and without dementia to register their interest in studies, helping researchers find the right participants at the right time. Join Dementia Research is a collaboration between the National Institute for Health Research (NIHR), Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland and has been funded by the Department of Health.

Dementia affects over 850,000 people in the UK, with 25 million of the UK population having a close friend or family member affected. A new national poll* has shown that almost two thirds of the general public (62%) would be willing to take part in dementia research, but more than four out of five people (81%) wouldn’t know how to volunteer. Join Dementia Research is designed to overcome these barriers and give everyone the opportunity to play a role in changing the outlook for people with dementia now and in the future.

The lack of access to willing volunteers is holding back critical research into the condition with government figures showing that less than 5% of people with dementia take part in research studies. The first of its kind in the UK, this innovative new service will boost research participation by connecting people interested in research to suitable dementia studies across England, Scotland and Wales. After piloting the service in a small region for six months, more than 1,800 people have signed up and already over 200 of them have participated in studies through Join Dementia Research.

The joindementiaresearch.nihr.ac.uk website offers a secure and easy way for someone to register their interest, discover studies that interest them, and ultimately connect with researchers to take part in their studies.

Anyone aged 18 years or over can sign up themselves, or on behalf of someone else, either by registering online or by contacting the helplines of Alzheimer’s Research UK (0300 111 5 111) and Alzheimer’s Society (0300 222 1122). By signing up to the service, people give permission for researchers to contact them with details of studies in their area that match their profile. People can then decide if they would like to participate in those studies on a case-by-case basis. By registering, people do not have to take part in any studies and can opt-out at any time.

Prof Martin Rossor, the NIHR National Director for Dementia Research, said:

“The government and charities have increased funding for dementia research over the last few years, meaning more studies are being done than ever before, but it’s often difficult to find willing volunteers at the right time.

“Join Dementia Research offers a way of ‘match-making’ – linking volunteers to researchers. The system also helps us plan future studies. It’s important that everyone should be able to find out about research that is happening near to where they live and get the opportunity to be part of that research. People can register with Join Dementia Research without being obliged to take part in a particular study, but we hope that the service will expand the pool of willing participants. Growing the number of willing research volunteers will help push forward research to make advances in treatment, prevention and care.”

Secretary of State for Health, Jeremy Hunt, said:

“New research is desperately needed to help the growing numbers of people who live with dementia, which is why we’re doubling the size of the funding pot. This is an important initiative, and I encourage anyone who is interested to visit the website or call the charity helplines to find out more about how they can help us tackle dementia.”

Sue Boex, one of the carers who helped design Join Dementia Research, said:

“This is a very exciting initiative, and one we really need people to get behind. Everyone can sign up, whether you have dementia or not, and there are lots of different types of studies to take part in. But because studies have very specific criteria, we need lots of people signing up in order to find the right people for the right study at the right time. I hope that 100,000 people will join the service in the first year. Its an ambitious target, but dementia is a massive problem and we’re ambitious to help make a difference through research.”

Speaking about this new service, Hilary Evans, Director of External Affairs at Alzheimer’s Research UK, said:

“As a charity focused on dementia research, we’re acutely aware of the tremendous impact volunteers make on research progress in dementia. We know there is a strong appetite from the public to play a role in dementia research, but until now there hasn’t been an easy and coordinated way for people to register their interest. We’re proud to be supporting Join Dementia Research to give people with dementia and their families the opportunity to be part of pioneering research to improve the lives of everyone affected by this heartbreaking condition.”

Dr Doug Brown, Director of Research and Development at Alzheimer’s Society said:

“We and others are increasing our investment in research to develop better treatments and ultimately a cure for dementia, but finding suitable volunteers to take part in these research studies is a difficult and costly task. This can slow research progress which is unacceptable given the urgent need of the hundreds of thousands of people affected by dementia.

“We’re thrilled to be supporting Join Dementia Research as it will overcome many of these barriers and speed up the ongoing research effort. For people with an interest in dementia research, this innovative new service gives them the best possible chance of finding and taking part in a suitable research study, empowering them to be part of the crucial search for better care today and a cure for the future.”

Professor Dame Sally Davies was appointed Chief Medical Officer:

“This superb initiative was developed to help ensure we can meet the ambitious targets for recruitment to high-quality research studies, set by the Prime Minister in his challenge on dementia. Join Dementia Research is a potential pathfinder for other fields, showing how to boost patient and public participation in research.”

Current research studies range from clinical trials of new treatments to surveys identifying what works in improving the quality of life of people with dementia.

 

Can we sum-up the NHS Constitution in 140 characters?

So, there’s been a lot of activity around the NHS Constitution this week.

The group reviewing this document, led by Dr Steve Field, held a twitter discussion one lunchtime and you can read the extracts of this on the Department of Health website here.  Then, yesterday, Jeremy Taylor from National Voices and a member of the review group wrote a rather good blog about the challenges of arriving at a Constitution that is both based on rights and values and has teeth .

This is all a very sensible bit of sounding out of people’s views ahead of the full public consultation on the Constitution towards the end of this year.

One of the immediate issues as noted both by the tweeters and Jeremy is the document’s lack of visibility.  So, in answer to my own question posed in today’s blog headline, while you of course can’t write the whole document in 140 characters it would be a noble aspiration and one fit for our ‘social media’ orientated culture to try and sum up it’s key pledge to citizens in 140 characters.  The statement then might be a footnote to many documents and communications received by patients, with it gradually seeping into society’s psyche.

I seem to remember that in the days of ‘Clause 4,’ the Labour Party did the very same thing by putting the wording of this on the back of membership cards.  To great effect given the numbers of people who were able to recite it.  Those were the days he says almost as if it is a confessional.  Anyway, I am going to have a go at my 140 characters version over the weekend.

I’ve also been pondering what has made the US Constitution such a successful document – and the one that springs to mind immediately when we think of constitutional matters – over many hundreds of years.  There is something about its clarity of language, its vivid nature, the fact that it is concise,  its ability to enshrine checks and balances between institutions but also between the individual and these organs of power, and the way it future proofs itself by building in an acceptance that not only do things change and providing mechanims for dealing with this.  Plus, finally, you can’t consider its resonance through time without also dwelling on the notable characters behind its compilation.  They were about as far removed from the pen of the modern policy-maker as you can be without the whole thing becoming fiction.

Perhaps that’s the real challenge for the future NHS Constitution as Jeremy sort of implies – whether it becomes fact or fiction.

PM’s Global Health Policy Summit Speech signals the personal as well as phenomenal

You can find the full text of the Prime Minister’s speech at the Global Health Policy Summit in London today here.

David Cameron’s remarks have caught the headlines because of his announcement about the new Phenome Centre.

But, as important, are a number of other areas of his speech. These deal with the importance of the NHS to making research happen, the Government’s commitment to enabling the use of patient data for research including the forthcoming consultation on the NHS Constitution, and his ‘Dementia Challenge.’  If ever we had an insight into his personal priorities for his administration across health research then this speech is a pretty strong synopsis.

In other news today, the Department for Business, Innovation and Skills, announced that Donald Brydon, current Chair of the Royal Mail Group, will be the new Chair of the Medical Research Council (MRC) succeeding Sir John Chisholm in nine months time.

Patient involvement in the Health and Social Care Act: National Voices Briefing

National Voices have published an excellent briefing on what the Health and Social Care Act (which received Royal Assent today) means for public involvement in care.’ And how we need to actively follow-up with the new NHS structures and bodies established by the legislation to ensure they keep to the letter of the law.  Read on.

From crisis to challenge: PM to spell out new dementia plan including research boost

This morning’s news bulletins are full of stories trailing the Prime Minister’s speech in London later today, when he is expected to launch a national challenge on dementia – from accelerating research funding and setting up a new academic science centre, to establishing a national screening programme and encouraging people to donate their brains to research.

Just over twenty years have passed since I climbed the steps to the offices of the Alzheimer’s Disease Society (now called the Alzheimer’s Society) then situated above a branch of the Abbey National Building Society on Balham High Street in South London, to begin work as their parliamentary officer. In those days I think the Society spent about £75,000 on research compared to the several million both it and Alzheimer’s Research UK spend today.  How far we have come?

Twenty or so of us were crammed into that office and I seem to remember working off the top of a filing cabinet for much of the next three months before we moved into central London.  Either that, or travelling round the Society’s local branches up and down the country; a network of the impassioned – spouses, sons, daughters and friends, brought together by their common experience of caring for a loved-one.  Yet it was also a community isolated by this shared experience, such was the stigma and lack of attention paid to dementia then.  And this sense of abandonment by society seemed cruelly accentuated by the very policy that was supposed to remedy it – community care; but that’s another story. It is still shocking to me that ‘then’ was 1992 and not 1892.

Over the last two decades, there has been much progress in terms of public awareness, the treatments available to people with dementia, and in terms of the quality of health and social care provided.  But the variables in determining whether, as a carer or as a person with dementia, you receive the right support and help are far too many.  The decisions by commissioners, providers and others that influence them, can feel far too abitrary.  The resulting isolation for loved-ones and their families, all too real.

For too long, dementia has suffered from a lack of attention and forward-planning at the very heart of Government which has been so pivotal to progress in other diseases such as cancer.  Today’s expected announcement by the Prime Minister, David Cameron, is therefore important not only because it comes from the top, but also because it begins to put in place key components of a strategy – from boosting research funding to improving diagnosis – which put dementia on a par with cancer, heart disease and other conditions as a national priority.  I am looking forward to seeing the full plan.

I hope also that the Prime Minister’s anticipated choice of words in describing what needs to happen  – ‘a national challenge’ – will begin to change the lexicon in common use when it comes to dementia; away from the numbing defeatism and ageism of ‘crisis,’ ‘timebomb’ and burden etc towards a more considered terminology which will inspire a shared commitment and endeavour.  We should never under-estimate the power and importance of language in these campaigns.

One final reflection.

It is pure coincidence that last week I had to pen the Foreword of a new book by a colleague.  In it, I mentioned how I witnessed people with dementia – aided by earlier diagnosis and new treatments – begin to have a voice and directly influence their care as well as local and national policy for the first time.  I have no doubt that their advocacy has been instrumental in getting us to this point.

Dear David Cameron, being a ‘research patient’ is one thing, it’s being a ‘research citizen’ that interests us more

Wall-to-wall coverage of the Prime Minister’s speech yesterday about life sciences and putting the NHS at the heart of innovation. All a bit frustrating therefore, that the full transcript of his speech is not yet available on the No 10 website as far as I can seen.

The BBC has by far the best overview (I would also recommend Fergus Walsh’s piece in particular).

My eyes nearly popped out of my head when I saw the headline of the former: ‘Everyone to be ‘research patient:’ says Cameron.’

But what if, Prime Minister, I thought, we pushed that further and developed a system in which every patient was in fact considered to be a ‘research citizen,’ regarded as full members of the ‘health research community,’ with clear rights and responsibilities?

That is a more interesting and challenging idea with greater potential for helping the wider life sciences industry.

It requires a culture shift away from simply viewing the NHS through the eyes of researchers (as yesterday’s announcement seemed to do at times) towards a position where we also view matters through the eyes of the patient. And not just as a participant in a trial but as an individual who can shape, inform, develop and disseminate research if given the right access and the right opportunity.

It would also require us to be brave enough to equip patients with the tools to exercise and, dare I say it, make clear choices about research, their data etc? And it requires a concerted effort to change the paternalistic attitudes that are embedded in our health professions and which only serve to disempower patients and restrict their life choices. As many independent commentators have been quoted as saying today, some of the biggest bugs that hold back research and innovation are alive and well in many GP surgeries?

This is demand-side economics at its most basic if you want to look at it like that. But it is just as important as the supply side stuff that was your focus yesterday. I am thinking that it uncannily sounds like the ‘Big Society’ or a patient-centred NHS. No matter, it goes to the heart of yesterday’s plans to boost innovation in the NHS.

How long can the Government continue living in a box before UK science unravels completely?

George Osborne MP, pictured speaking on the la...
Image via Wikipedia

There is an article in today’s Times Higher Education (THES) about a report from Science is Vital campaign on the current crisis in the career structure for scientists entitled: Careering Out of Control: A Crisis in the UK Science Profession?  You can also read more on the Guardian blog

Looking through a wider lense still, I see that Mark Henderson has written an excellent piece in the latest issue of The Times Eureka magazine about how UK scientists and organisations won the battle with last year’s comprehensive spending review result but not the war.  Not least because, as the Campaign for Science and Engineering (CaSE) has reported the cuts to science will be much greater than expected not least because of the higher than expected rate of inflation.

The Chancellor of the Exchequer, George Osborne, said at the Conservative Party Conference as he announced a bunch of tinderstick intiatives in science, that he wants the UK to produce the greatest scientists .  And yesterday the Prime Minister, David Cameron, implored us to believe that we can fight our way out of the current turmoils. 

Yet, with the science funding picture as it is and the Government dogmatically sticking to its mantra  it is difficult to see us fighting our way out of a cardboard box at the moment, let alone create the best and the brightest scientists.

****************************

I found myself deeply moved by the news and growing tributes rightly being paid around the world this morning to Steve Jobs following his death from pancreatic cancer. Whether as innovator, designer or consumer champion he has been a hero to many including myself.

When I got to work I trawled through some of Steve Jobs quotes on the web to remind myself of why and how he was different. These two struck me:

A lot of companies have chosen to downsize, and maybe that was the right thing for them. We chose a different path. Our belief was that if we kept putting great products in front of customers, they would continue to open their wallets.

And this too:

Quality is more important than quantity.  One home run is much better than two doubles.

Stem cell research…and that ‘nudge’ theory thing again

So, if you are looking for more information about today’s Government report: ‘UK Taking Stock of Regenerative Medicine in the United Kingdom’ you really do need to visit Becky’s policy pages as she has, per usual, taking the words out of my mouth.

If am being absolutely honest though, I am more looking forward to tomorrow’s report into changing human behaviours by the House of Lords Science and Technology Committee as chaired by Baroness Neuberger. There have been a couple of preview pieces including this one in yesterday’s Observer which is by far the best.

My sense is that the report will say that the ‘nudge’ approach to changing behaviours is, like one of those self-help books that seem to fill the shelves at WH Smiths these days – interesting, titillating but lacking in an evidence-base to support its place at the heart of Government policy.

It’s not the first time this has happened you might say…and you’d be right.

Is the Council for Science and Technology Fit-for-Purpose?

It is a question all Boards and Committees should ask themselves.

Yesterday the Prime Minister announced the final names making up the re-formed Council for Science and Technology. Many of the final selection are people I much admire and David Cameron can be confident he is in good hands when it comes to scientific advice.

But it is curious – and this is purely a personal opinion – that the new membership would seem to leave the Government strategically naked when it comes to that most difficult of tasks – how to communicate scientific endeavour when it pushes the boundaries of public acceptability. I certainly can’t see a name that is instantly recognisable as filling that role anyway.

The common thread running through recent controversies such as GM foods and hybrid embryos is that the then sitting Government found it a struggle to steer a steady and confident course to safety. In the latter instance, it positively scrabbled and begged others outside to make the case on its behalf. Fortunately, the resulting campaign was a success.

When the Government announced the appointment process for the Council I did get the various application papers with half a mind to apply. For I may be wrong but I am sure that it was actively seeking candidates who might be able to give a more ‘public’ view of things.

It would be interesting to know if such people put themselves forward wouldn’t it?

In the meantime I worry that David Cameron may well emerge from CST meetings enthused by his latest science lesson but with few pointers on how to pass it on to the nation.

Sounds like the first job of the new Council might be to do a skills audit. As the old-hands in Board-land will tell you, when in doubt, co-opt or get a guest speaker.

Cameron’s High Five

A reminder that David Cameron will be making five pledges on the NHS in a ‘keynote’ expected this week (possibly tomorrow (Tuesday)). Things like..there will be no privatisation, and an end to waiting lists etc.

The Economist’s ‘Leviathan’ blog - which is always worth a look – takes a rather derogatory view of the Prime Minister’s five-a-day prescription, calling it mood music.

I read it as a sortof high-five to the NHS to rebuild confidence. But it will be the stuff between the lines that we’ll need to look out for, since this will hint at the conclusions drawn after the recent ‘listening exercise.’

That giving feeling

David Cameron was on the stump yesterday selling, or should I say ‘re-selling,’ his Big Society vision.  It has been pilloried in most of the articles that I have seen but if you wish to read his speech in full and make your own mind up then you can find a copy on the New Statesman website

The PM’s approach to the ‘Big Society’ reminds me of the early days of the New Labour Government when everything was branded ‘the people’s..’ this or that.  Like then, I think the Big Society language jarrs with many people quite simply because it feels as if they are bing sold something they already own. 

That, and the fact that the undercurrent running through it – that we are all somehow not pulling our weight in the name of society – probably feels a little too hard to bear for the many people using all their energies just to make ends meet for their own family and friends. 

ACEVO pre-empted David Cameron’s speech with a report of its own commission on the Big Society.  It said that the Government should be clearer about its vision and give it a bigger push.  It welcomed the Government’s ideas on promoting greater giving while saying they could have gone further. 

I wholeheartedly support measures to make it easier for people to give to charity, but I do not think this is the issue that needs addressing. 

The real problem with the Big Society vision is that it is a totally utilitarian view of volunteering or citizen involvement.    It doesn’t encourage us to examine the relationship between charities, citizens and the state, rather it simply asks us to ‘serve.’  It is top-down and top-heavy in tone and style rather than liberating or enthusing.  It is of its time but not forward thinking.

UKCMRI Gets Go-ahead…and news on CST

Those who visit this blog regularly will know that we’ve been following progress with the plans to build the UK Centre for Medical Research and Innovation in London ever since our first post.  So, in what feels like an early Christmas present for science, it is good to be able to report that yesterday Camden Town Hall councillors gave their go-ahead to the project. 

 The Wellcome Trust has a straightforward press notice on it (they are one of four partners involved, the others being Cancer Research UK, UCL and the Medical Research Council) but I can highly recommend the UKCMRI website as well where you can get a better idea of what the centre will look like and what it will do.  Let’s hope the new centre will be snowproof unlike the rest of London.

In other news this week..this hasn’t been picked-up very widely but the Prime Minister’s Office announced the membership of the re-constituted Council for Science and Technology which was set-up in the early nineties (and re-launched in 2007) to advise the PM on cross-cutting issues of strategic importance.  The Council is also advertising for ten independent members.

Thw word is that Monday looks like the day when the Government will announce the science budget allocations…and I also hope that we can publish our independent report of the AMRC/INVOLVE patient workshop on research regulation.