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.

 

Is it time to give patients the opportunity to self-refer themselves to take part in NHS research?

Harpal Kumar, the Chief Executive of Cancer Research UK, yesterday posted a blog about the new task force he is leading for NHS England on cancer diagnosis.  The aim of the task force is to enable people to get an earlier and speedier diagnosis of their tumour in the future.  But it will also be looking at treatment and after care. The initiative is badly needed and it is encouraging that it has such a strong focus on piloting ideas rather than simply cogitating what ‘might be.’

Many of the Sunday newspapers picked up on the specific proposal to allow patients to self-refer themselves to specialists for diagnostic tests.  If you believe in patients taking greater control over how their health needs are met, then this sort of direct referral is the logical next step.

Who knows what it means for GPs though?  I think many patients empathise with their GP about workload and the pressures of the job.  But I am sure they are less than enamoured, as I am, by the way the profession presents itself.  One of the unwritten stories for 2014 is how the GP profession has successfully rebranded itself as the real victims of health service reform.  And there was I thinking it is service users!

I suspect I will be told that my view is just one person’s perspective or experience (and, yes, my family did have a less than brilliant experience of primary care this Christmas) and doesn’t reflect the ‘truth.’  However, I seem to remember the Kremlin saying this about its critics before the Berlin Wall came down.

The interesting thing about the issue of self-referral is that it also came out as a very strong signal in the public feedback about the UK Clinical Trials Gateway in 2012.  In the survey NIHR conducted, approximately two thirds of people said they would prefer to be given the option of going straight to a clinical trial unit to discuss the possibility of participating in a clinical trial rather than being referred back to their GP by UKCTG.  Why?  Well, again, it is this perception that their GP is the ‘middle man’ blocking their path – rather than being a gatekeeper – to trying new treatments.

Since then, there continues to be an increase in the number of research active GP practices thanks to some sterling work by the NIHR Clinical Research Networks.  But perhaps direct referral should be the way forward for research to increase patient choice and participation.  If this capability can not be built around our clinical trial units across the country, perhaps it is something that our Academic Health Science Networks (AHSNs) might think about supporting – a service in each region that patients could refer themselves too and take the strain off GPs and other serices.

Cancer might well be a good test bed for this and something the task force should consider.  One in three cancer patients have a discussion with their doctor about research with many of these going on to take part in research as a result (National Cancer Patient Experience Survey 2012-2014).

Read all about it #WorldMentalHealthDay – Research Special!

In case you have just woken up, today is World Mental Health Day.  This year’s focus is on schizophrenia but a lot of other things are going on about mental health issues in general.

In no particular order, but with thanks to friends and colleagues for sending these to me, here are some interesting things happening with a research flavour:

A new Alliance of Mental Health Research Funders (AMHRF) has been established with some fantastic names associated with it such as the McPin Foundation.  The Alliance has been quick of the mark in issuing a manifesto for mental health research with one eye most clearly on next year’s General Election.

The British Psychological Society and Royal College of Psychiatrists have called for more funding for mental health research.  See here. A special issue of Evidence-Based Mental Health has been produced with a focus on schizophrenia and the magazine is also doing a tweet chat on 17th October – hashtag is #ebmhchat.

From an NIHR point of view you may wish to check out the PARADES study being conducted out of Nottingham University looking at bipolar disease.  It’s £2 million over 5 years with the aim of helping people with bipolar disease manage their condition themselves.  Official NIHR stuff here.

It would be remiss not to mention the new James Lind Alliance Priority Setting Partnership in bipolar disease being conducted by the NIHR BRC at Oxford, the mental health research charity ‘MQ’ and others.

And the Secretary of State for Health Jeremy Hunt is making a speech at the Royal College of Psychiatrists today setting out a ream of new measures including a push to get FTSE 100 companies to sign up to the Time to Change anti-stigma campaign, performing performance tables for NHS Trusts of mental health, and asking the College President, Simon Wesseley, to lead a group to define good mental health practice.  How do I know? Because the Dundee local press say so.

Very happy to add contributions and other items.

 

Ex-offenders take up mantle as peer researchers in pioneering @PenCLAHRC study

This is an excellent example of service users being involved in a study as ‘peer researchers’ and deserves attention beyond the readership of the Plymouth Herald.

Engager II might sound like the name of a spaceship but it’s actually the name of a study which intends to look at the mental health issues faced by prisoners near to and after their release.

In particular: ‘the research project…..seeks to develop and evaluate a system of care to address those problems. It aims to create an integrated approach that not only involves therapy but also addresses housing, training and employment, thereby helping to ensure that meaningful care continues after release.’   The full news release can be found here.

The study is funded by the National Institute for Health Research (NIHR) and being driven by PenCLAHRC partners, Plymouth and Exeter Universities as well as Manchester University.  I am not at all surprised to see PenCLAHRC behind another bit of pioneering work, particularly in terms of public involvement.

 

NIHR looks to go PROACTIVE with plan for research participation and engagement

Why shouldn’t you and I be able to take part in appropriate and relevant research as part of our NHS care and treatment?

Why shouldn’t we be able to expect to have that discussion with our doctor as part of our diagnosis and care?

Why shouldn’t we be able to access research evidence so we can reach an informed decision with our doctor about what is best?

The vast majority of us, when asked, want to take part in clinical and other forms of research.  Those who have been in a trial are eloquent about the benefits.

Surely we should aim to give willing people the opportunity and confidence to become active research citizens, to give willing patient populations the opportunity and confidence to become a research active community?

Through this wider engagement and participation we can also grow and strengthen the numbers of people actively involved in designing, shaping and delivering research with their partners in the health professions and research.

At the moment too many barriers are placed in people’s way.

That’s why NIHR’s ‘OK to ask’ campaign being run today, on International Clinical Trials Day, for the second year running is so important.  It is about removing those things that lie in our way to our active role in research.  It is important to remember that the original idea for the campaign – and its shaping -came from patients and carers.

A crude instrument it may be. Fledgling in its implementation at the moment, I would certainly agree. But it is a start and we have to start somewhere.

What’s important is that we have a long-term plan and commitment to work towards those three aspirations I set out at the beginning of this blog.

Today, the National Institute for Health Research (NIHR) has published its strategic plan for increasing citizen engagement and participation in health, social care and public health research (2014-2019) as part of a document entitled ‘Promoting a research active nation.’ 

The plan sets out a formal NIHR programme of work – called PROACTIVE for short – which it aims to support over the next five years, working with citizens, health professionals and NHS staff, funders and other research organisations to enable citizens to:  choose to take part in research; use the evidence on which their care is based and; have a good research experience and recommend it to others.

In some ways there is delicious irony in the fact that we run ‘Ok to ask’ on International Clinical Trials Day (20th May) which is itself a celebration of the day when James Lind started his famous ‘scurvy’ trial on the 20th of May 1747.  After all, the seamen who took part in his trial were most definitely ‘subjects’ of inquiry as opposed to participants.  But we have much work still to do.

Looking forward to my visits to the Maudsley and Barts later this morning.

 

A brief update on NIHR’s review of public involvement in research

We have just passed the mid-way point in the ‘evidence-gathering’ phase of NIHR’s strategic review of public involvement entitled ‘Breaking Boundaries.’  So here’s an unofficial Chair’s view.

The announcement of the review on 31st March, its terms of reference and our initial call for views can be found on NIHR’s website here

People can at the moment choose to respond to the review using the downloadable questionnaire on the website, or using the online survey which is available here.  So far, almost 200 people have responded to the online survey.  61% have said they are a service user/patient/consumer/carer.

In addition there is now a facilitator guide as well as some PPT slides available for people who are planning to hold a group discussion with patients, carers and colleagues before responding.  Our sense is that quite a few organisations are planning to do this as part of their response.  Anyway, the guide and the slides can be found at the end of this post.

Also over the last month we have held discussion sessions at four meetings where the excellent RAPPORT study of public involvement was reported. These events took place in Manchester, Bristol, London and Cambridge and reached about 200 people, again mostly patients, carers and members of the public.  Thinking about these sessions and the sorts of comments we are getting through the written and online survey evidence, some key issues and questions.  Thematically, these might be headlines:

  • The purpose and value of public involvement
  • The infrastructure needed, national, regionally and locally, to deliver public involvement
  • The resources necessary to deliver public involvement that works
  • The importance of relationships to the success of public involvement
  • The learning (knowledge, skills, experience) needs of all partners and how to support them
  • The need to tackle the impact and outcomes agenda

We have also held two ‘international’ sessions by phone with colleagues from Canada, USA, Denmark, Australia and the European Union.  It was clear from these conversations that the UK is held in very high regard for what it has achieved in public involvement; we are the recognised leader in many respects. Also, that this leadership is closely associated with the work of INVOLVE over the years.  Nonetheless, we have much to learn from them.  We are all battling with the need to prioritise and find models suited to the future not the past or present.  The case for an international alliance or association where we can share our ideas and challenges is growing in strength.

This week we will be meeting with representatives and members of the Association of Medical Research Charities (AMRC) and Association of the British Pharmaceutical Industry (ABPI) to get their views on public involvement in research.  Heading into June there will be a range of events where we will be holding ‘consultation’ sessions including North West People in Research Forum on 30 June and the Health Services Research Network (HSRN) conference on 19/20 June.  And, finally, some yet-to-be scheduled tweet chats and social media activity.  Please remember that the hashtag is #PPIBreakingboundaries

Please keep the responses coming in.  I know I speak on behalf of all the review panel when I say they are insightful, helpful and hugely important in their own right.

The  previously mentioned guide can be found here: 

  And the slides can be found here: