Alzheimer’s Society

I am often asked whether it is difficult – if not impossible – to involve the public in laboratory based research where researchers have limited or no direct contact with patients and the public.

My answer is that it might be difficult but it can be done. And the benefits can be significant.  The real challenges are to be clear about the purpose of this involvement, to identify where it can make a difference, and to identify the right methods for making it work in practice.

Earlier this year I sat on an EU funding panel in the neurosciences.  We looked at a wide variety of applications – from public health to basic science in a laboratory.  It was striking to me that the basic scientists  often put together more exciting and imaginative public involvement plans than their colleagues in other fields who should’ve known better. It was as if they were rising to the challenge; they wanted to prove those wrong who say that the lab is no place for the public.

I seem to recall that, for some years, the MS Society ran a buddy scheme in which MS sufferers were teamed-up with lab-based researchers. The partnership they developed over time became a motivational force for the researchers who had often never met a person with MS before. Equally the people with MS felt empowered by the knowledge and understanding they gained. They became impressive ambassadors for the charity’s research work.

I am delighted to say that a little known but very important group in the world of public involvement – the ‘User Involvement in Voluntary Organisations – Shared Learning Group’ (which brings together charities and voluntary organisation pioneering public involvement work) – has published a short but rather brilliant discussion paper looking at ways in which patients and the public can be involved in lab-based research.

You can find the paper here (see link entitled ‘Involving people in laboratory-based research). It includes examples from the Alzheimer’s Society, Cancer Research UK and Parkinson’s UK, some really helpful guidelines to aide your thinking as well as links to further reading.

I highly recommend it.

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.

 

The Alzheimer’s Society has published a new booklet entitled ’15 years of the Research Network.’ http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2261 It looks at the work of their Research Network of 250 people with dementia and carers in shaping and advancing the charity’s £5.3M research programme, some of their achievements, and a short history of how it all got started.

The story of the network – originally called Quality Research in Dementia (QRD) – is often held up to be a tale of one of the pioneering organisations of public involvement.  With some reason, not least the fact that it started its journey in 1999. The Society remains at the vanguard of charities plying this route within the not-for-profit sector many years later. It is disappointing and a matter of debate why more charities have not embraced public involvement in the same way.

I was working at the Society at the time when the idea of QRD emerged. I worked on the first public awareness campaign about dementia and research which contributed to this thought process. This won an industry award. Yet I had very little to do with the network’s setting up I am afraid. led organisations. 

The Alzheimer’s Society ‘Research Network’ story contains a number of universal lessons about public involvement in research. Some I have written about before.  But not all.  In brief, they are:

Time: It takes time to form, establish and embed public involvement in an organisation until it becomes part of normal business. No one ever tells you this at the beginning. Some people behave towards public involvement as if it should somehow flow freely once the tap is turned on. Think again.  Running water is only guaranteed if you prepare well and have a well-thought out plan in place.

Keep it simple: The quotes at the end of the booklet convey this best. The essence of public involvement is about bringing people together who have different perspectives and enabling them to focus on the same issue or challenge as equals.

Leadership: Nothing happens without leaders. But just as important as the avowed champion, is the sceptic who is brave enough to say to his colleagues: we should give this a shot because maybe, just maybe, they are right.

Continuity : Comes from money and appropriate budgeting. It is also a consequence of staff and patient leaders being supported to carry the torch. Through bad times as well as good. The Society booklet was written and produced by members of the network including many who have been there from the start. The network would not be what it is today without their staying power and memory for what it was like before. Many of them are also the patient champions who are now instrumental in the Society’s work around the Prime Minister’s Dementia Challenge.

Above the line: When it comes to public involvement in research you must be willing to put everything ‘above the line’ and up for discussion by patients and carers. It may be that you agree to put some bits off until later. But, at the beginning, you must show as an organisation that you are brave enough to listen to what people have to say – however hard – and turn this into an agenda for improving the quality of what you do.

The charity Pancreatic Cancer Action have caused a storm with their new ‘cancer envy’ advertising campaign in which patients are pictured saying things like: ‘I wish I had breast cancer.’

So if it’s shock tactics they were after, and public attention to go with it, then they must be delighted.  As must the advertising company most of all. Job done, they will be saying I suspect.

One can understand the temptation for charities to go just that little bit further in making us sit up and notice.  More charities than ever before are competing for yours and my funds. They are, I believe, genuinely motivated by a desire to make sure potentially life-saving messages get through to us.  But do the ends really justify the means?

I can remember two occasions in my charity career when judgement calls needed to be made about advertising.  At the Alzheimer’s Society in the mid-nineties the staff recoiled at a proposed advertising campaign showing a brain scan with the slogan ‘It blows your mind.’ But when tested with people with dementia and their carers they loved it. They felt that the time was right to shock people a bit. So we ran it. All seems a bit tame now twenty years later.  I can’t even find the posters on the internet.

More recently when I was at Ovarian Cancer Action I looked at some proposals for a ‘shock’ advertising campaign and would have probably signed on the dotted line if I had had a choice.  But I was persuaded otherwise by colleagues.  Looking back, they were right and I was wrong.  There was little evidence to suggest there was the appetite among patients and carers for such a message at that time.

The reason for telling these stories is simply to make the point that – as with much else in running a charity – things get dangerous once you get too far ahead, or too far behind, your beneficiaries and how they think and feel.  To be fair to Pancreatic Cancer Action it does sound as if people with pancreatic cancer have been involved in the campaign.  They feature in it at least anyway. The founder Ali Stunt makes this point in her blog about the campaign yesterday. Although the fact that -as far as I know – other pancreatic cancer charities are not clamouring to endorse it might suggest that they are hearing otherwise on the ground.

On This Morning earlier today, the resident TV doctor, Dr Dawn, said the controversy about the campaign was based on a misunderstanding of its message.  The charity is wanting people to go to their doctor with possible early symptoms to get them checked out as possible.  Fair enough.  But if the message is being obscured by the medium’s ‘shock tactics’ then I would say the campaign is failing in its objectives.  I could understand it a bit more in a strange way if it was a cool fundraising pitch but not as a health improvement campaign.

I do agree with others that the charity has crossed the line into quite dangerous territory in which we are being asked to consider whether one disease is nastier than another. Is that really what charities want now? As Breakthrough Breast Cancer have said today: ‘It’s not a competition.’

It’s a matter of judgement at the end of the day.  And I am no Mary Whitehouse.  But in my opinion the charity has made the wrong call.

I just hope it’s not counterproductive in the long run.

It is no surprise that, in death as in life, Nelson Mandela has caused us to gaze upon humanity with warmth and optimism. I am sure I am not alone in having taken a great deal of pleasure from reading the celebrations of his life and reflecting on how different tomorrow would look were it not for him.

No more so than Sarah Boseley’s article  in The Guardian on Friday .  She deals with the way in which Nelson Mandela changed the HIV/AIDS agenda.   Her piece focuses on Nelson Mandela’s speech at the international Aids conference in Durban in 2000 – arguably a key turning point in the fight against the disease.  His words refocused the minds of warring scientists, activists and politicians, on tackling what mattered most: the human tragedy being played out on the African continent.

Sarah Boseley inspired me to dig out the text of his speech and here it is.  I hope you will find just five minutes today to read it.  Even on the page it is a beautiful piece of oratory. You can hear Nelson Mandela’s voice so clearly.

Two extracts struck me as particularly relevant to the discussions at the G8 Dementia Summit in London tomorrow:

“Now, however, the ordinary people of the continent and the world – and particularly the poor who on our continent will again carry a disproportionate burden of this scourge – would, if anybody cared to ask their opinion, wish that the dispute about the primacy of politics or science be put on the backburner and that we proceed to address the needs and concerns of those suffering and dying. And this can only be done in partnership.

I come from a long tradition of collective leadership, consultative decision-making and joint action towards the common good. We have to overcome much that many thought insurmountable through an adherence to those practices. In the face of the grave threat posed by HIV/AIDS, we have to rise above our differences and combine our efforts to save our people. History will judge us harshly if we fail to do so now, and right now.”

..and finally:

“The challenge is to move from rhetoric to action, and action at an unprecedented intensity and scale. There is a need for us to focus on what we know works.

We need to break the silence, banish stigma and discrimination, and ensure total inclusiveness within the struggle against AIDS; those who are infected with this terrible disease do not want stigma, they want love.”

I am not making a comparison between HIV/AIDS and dementia.  But Nelson Mandela’s words embrace eternal themes that are well worth remembering on the eve of tomorrow’s summit.

The G8 Dementia Summit programme was published yesterday and can be found here.  The website will also have coverage of the meeting all day tomorrow I believe.

My good friend, colleague, former carer to her mum, Peggy, and campaigner, Susie Hewer, has a piece on the dementia summit website about her own experiences with dementia and what the summit means for her here.

My previous blog on the G8 Dementia Summit can be found here.

BBC coverage of Nelson Mandela’s memorial service taking place in Soweto today is here.

This time next week they will be laying the tables and giving the carpet at Lancaster House in London one last hoover. All in preparation for the G8 Dementia Summit on 10/11th December 2013.

I expect the current stream of articles and stories about dementia will become a veritable flood ahead of the big day.

Alzheimer’s Society ambassador and patient, Terry Patchett, has already written in The Sunday Times about his disappointment at the lack of progress with the Prime Minister’s Dementia Challenge. Blogger @legalaware who I much admire has commented on the corporatisation of dementia.

And well he might. Dementia is now big business. You don’t have to search too long to find city analysts estimating its size and value as a market. I wonder also how many of you saw the adverts for the ‘Alzheimer’s Show’ in London, and pondered, as I did, that there was just a hint that the disease was being made to sound like a lifestyle choice.

But I nearly choked on my Shreddies at the weekend as I read Jeremy Hunt’s thoughts in the Daily Telegraph. For I never thought I’d hear a sitting Secretary of State for Health reflect on the postcode lottery in dementia diagnosis with words we would normally associate with patient groups and campaigners. It’s enough to make one lose your bearings.

[As an aside the map doesn’t tell us anything new I am afraid. Other than that we wouldn’t be here if successive Governments hadn’t neglected dementia as an issue for 20 years. And we shouldn’t let them off the hook about the next 20 either. Only they can make a serious change to the cartography of this disease. Which is why the Dementia Challenge is so important.]

Now about this summit. Will it be a case of ‘so what’ or ‘slam dunk, job done?’ Expectations are certainly high.

Unfortunately, as an arena for great things, summits are not what they were. We grow up learning about the great summits of our time where conflict was settled and rights enshrined. But these days they are more about the careful choreography of different interests. Sometimes they lead to a merry dance. More often, success is defined by whether the participants walk out in step and to the same tune.

So I doubt very much that we will see our leaders emerging from the G8 Dementia Summit scaling new heights. But we may see them set out together from their newly pitched base camp. And that is good.

I suspect we will see some commitment to increased research funding even if the figures are non-specific. Also to greater international collaboration. But if I were at the table I would want three things to emerge from the final communique that is agreed at the end of the meeting:

Humanity: amidst all the talk of science and molecules a recognition that dementia is about people and relationships that are often under great stress and suffering great hardship. Recognition of the role carers play is a must.

Home: an acknowledgment that for many, no wonder drug or breakthrough will be found fast enough to alleviate symptoms or prevent deterioration. Millions of the world’s population will continue to care and be cared for at home, often in isolation. I hope leaders are not seduced too much by the petri dishes and slides of brains which will be rolled out. But recognise the predicament that people find themselves in because of a lack of care and support. We must see a greater priority given to research into quality of life issues.

Hope: I say that we are unlikely to see leaders scale heights. Yet that is no reason for those of us watching at home not to feel that a new ‘moonshot’ has begun. That this is just the opening chapter and that we all have something to contribute. We must see a commitment to return to the table time and time again in the same way that our world leaders do to consider matters of trade or economics.

If I wake up the day after and see the summit as clear as day then, in my view, it would have been worth it.

First off, an anecdote inspired by the Secretary of State for Health, Jeremy Hunt MP’s, announcement to mark the 65th anniversary of the NHS, that all older people will have a named clinician responsible for their care.

This is absolutely good news.  But it’s the view down the narrow end of the telescope.  I wonder how things might look if it was an older person looking down the other end of the telescope?

Gordon Lishman, the former DG of Age Concern (now called Age UK and looking ever more like the charity equivalent of ‘Poundstretcher’), once said at a conference, ‘we will know change is upon us when doctors and health care staff can remember an older person’s name and call them by it [sic].’

Anyway, I am thrilled by the fact that this whole episode reminded me to dig out and pass on a really rather excellent paper by a colleague, Peter Lansley, who is Professor Emeritus (Construction Business Management, Assistive Technology, Ageing) at the School of Construction Management and Engineering at the University of Reading.

His paper, published in Ageing and Society last year, is a review of the special programmes of ageing research run by the research councils and others over the last 15 years.  It is a highly readable critique of how the aforementioned bodies failed to grasp the opportunities to promulgate multi-disciplinary research into ageing: top-down, highly linear in their approach, and certainly not user-driven, most of these programmes have failed to deliver anything of more than passing interest.

You will see that one of the other observations Peter makes in his paper is the extent to which single disease concerns have dominated the view taken by funders, again to the detriment of the whole. Some years ago the government funders, charities and others pulled themselves together into what is called the UK Age Research Forum (UKARF).  In fact I have featured several of its meetings on these pages.  It was never the easiest of partnerships.  But it really does look in abeyance at the moment.

If you look at the website, there are no UKARF events listed and most of the forthcoming activity is disease specific and run by the relevant charity.  I note the Alzheimer’s Society provides the secretariat but they have a lot on their hands with the Dementia Challenge.  So, it might be good for someone else to step up to the plate although in my experience few organisations felt able to go that in the past.  And maybe UKARF is not the right model.  But, in the meantime, I fear another year of missed opportunity for multi-disciplinary and multi-agency ageing research lies ahead.

My apologies to Peter for taking so long to flag this paper up….