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:

NIHR makes plain English summaries a requirement of funding via @NIHRINVOLVE

Plain and simply good news from a citizen point of view. With thanks to INVOLVE and NIHR colleagues for making this happen,

Plain English summaries in National Institute for Health Research (NIHR) funded research.

The National Institute for Health Research (NIHR) is committed to making sure that each research study it funds has a clear and concise plain English summary. It is important that this information explains the research as a whole and is easy to read and understand. From14 May 2014 a good quality plain English summary, submitted as part of the standard application form, will be a requirement of NIHR funding.

What makes a good quality plain English summary?

It is clear, easy to read and is as jargon free as possible. It provides an overview of the entire research study that readers can understand straight away.

Why is it important?

A plain English summary is used in the following ways:


reviewers use this summary to inform their review offunding applications

summaries of funded research are made publicly available on NIHR and other research websites to inform the public and researchers

If it is felt that a plain English summary is not clear andof a good quality then the researchers may be required to amend their summary prior to final funding approval.

Where to get further information?

Visit the NIHR ‘make it clear’ webpage to find out

http://www.involve.nihr.ac.uk/makeitclear

Or contact the NIHR Research Design Service

www.rds.nihr.ac.uk/

NIHR Friday: BioResource launch has volunteers at its heart

Delighted to see today’s announcement by the National Institute for Health Research (NIHR) of the new NIHR BioResource. 

The importance of the new BioResource (the main website for the BioResource is here) is underlined by the fact that not one Minister but both the Secretary of State for Health, Minister for Health plus the Chief Medical Officer, Professor Dame Sally Davies, are quoted in the announcement.  Lesser events are lucky to get one of these on paper.  More than three (or, come to think of it, none at all) and it usually means we are talking about a crisis.

The NIHR BioResource is a shared enterprise that spans a number of our world-class Biomedical Research Centre (BRC) facilities in Cambridge, London (multiple sites), Oxford, Newcastle and Leicester.

But, at its heart, is a population of 75,000 volunteers – patients, family members and others – who wish to help further clinical research across a range of conditions.  As NIHR says in its announcement:

‘[NIHR BioResource] provides a national recallable resource of volunteers of patients, their families and from general population who wish to participate in clinical research across a wide range of studies. Volunteers provide clinical information and samples that allow them to be recalled by their genotype and phenotype (their physical characteristics) for experimental medicine studies and early phase trials.’

This time last year I was fortunate to visit the NIHR Cambridge BioResource Centre at Addenbrookes Hospital.  I came away being very impressed by the passion and commitment to public involvement shown by its leadership team including Dr John Bradley, the Director of the Cambridge BRC.

It was clear that they had done much to involve patients and the public in what they do but wanted to get better at it.  I seem to recall that much of my meeting with them was about how to involve the public more in the running of the BioResource, promoting it to the local population, and using what they learned to benefit other NIHR facilities in Cambridge as well as much wider.  The opportunity (and challenge!) for the future will be how to make public involvement relevant and effective across all the BioResource sites.

If you want to volunteer to take part in NIHR BioResource these web pages will tell you more.

Untold stories in clinical research: the carer’s tale

When asked, the National Institute for Health Research (NIHR) will tell you that 630,000 people took part in a clinical study last year.

I wonder, however, whether that number should be raised to nearer one million*. For alongside many participants during their journey in research, walks a mother, father, brother, sister or significant other. One of the six million carers that save the country many billions of pounds each year by caring for a loved one.

I began my career in an organisation (the Alzheimer’s Disease Society now the Alzheimer’s Society) that was founded by carers and driven by their priorities and concerns. That was until earlier diagnosis, advances in medicine and societal change brought the rights of the person with dementia to the fore.

Rightfully so.

I was part of a lobby group called Disability Daily that was part of the movement which forced Government to pass the Disability Discrimination Act and set down in legislation the rights of people with disabilities in employment, accessibility and to self-determination in other aspects of life.

Rightfully so.

But carers have not stopped caring and their needs have not lessened because of these developments . In fact you could say they are greater than ever before as services become more stretched and disjointed and less person-centred. When I review the new fangled apps and self-management tools that researchers love to put in front of us these days, it strikes me that there is a great unspoken behind them all. It is that, however wonderful these things are, the onus for support is being shifted more and more to the household, the family, the immediate relationships a patient has. If they are lucky to have these of course. Are we really ready for care-behind-closed-doors as opposed to care in the community?

As an aside I implore you to support this year’s National Carers Week and it’s Carers Quest in June (9-15th) for this very reason. To ensure carers are recognised in and by their communities.

For the carer of someone taking part in research there are many anxieties and issues to consider. There are some very practical ones: getting your loved one to a many more hospital appointments and waiting, waiting, waiting; having to take more time off work or patchwork childcare around a new timetable; being your partner’s memory to ensure they do the tests or take the treatment and the right time and in the right way.  Carer costs are rarely taken into account when thinking about the cost-effectiveness of trials for instance.

Emotionally, there is much to contend with too. Worries over the added stress for your loved one of trying the untried. Concern that your partner is making the right decisions in their interest and not doing it to please others. Suffering each side-effect anticipated or not and it’s associated disruption to the rhythm of the caring day you that have perfected for so long. Remaining motivated for you and them. False hope. Being apart. Being lonely.

We do not talk enough about carers and the impact on carers of a person taking part in clinical research.

When we do my observation is that the conversation focuses on some predictable areas:
– the consent process and particularly consent issues when the research participants has mental capacity issues
– the tensions between parent and child and their respective agendas when the latter is the research participant
– the fact that not all care-giver relationships are kind and caring ones with the potential for serious abuse

All this is true. But only a few of the fragments of the research story as told by carers surely?

When I listen to patients and their carers talk about their experiences in research, so much more seems to emerge about their relationship which is rich and potentially useful for how we design research in the future. How much more could we do to take care of carers when the going gets rough on a trial and ensure people stay the course? Perhaps we ought to have an information and consent sheet for carers as well that captures their concerns? Can they be important brokers of the idea of taking part in the first instance?

That’s certainly how I felt this afternoon after the public involvement session at the Eastern Region Celebrating Clinical Research Nurses conference in Newmarket. The rather brilliant panel of adults and children (Beth and Evan) spoke insightfully and constructively about many things. From the quality of information and the issues that extended family can have over a trial and how to manage this, to seizing back control from a system and the way medicine can work was a strong theme. The patient’s story and the carer’s story were not always different, but the accent and tone was. How we reflect this is the challenge?

The literature on carers of people in research seems poor, an unexplored area of inquiry? If I find any, I will post it. Most of what I have found looks at the motivations for patients and carers for going into a trial.

So it is good news that the Local Clinical Research Networks (LCRNs) have put ‘carer’ into the title of their work on public involvement. It is now called Patient, Carer and Public Involvement and Engagement. Or something like that.

But they are going to have to get their acts together. I want it to be more than just in their title. Surveys will only go so far. We need more carers to be involved in how we design and deliver research. They have as much right to be on panels or speak at conferences as patients themselves. Carer issues, concerns and experience must be part of the story they tell across NIHR.  They are also very much a gateway to participation for many as the Stroke Research Network has shown during its lifetime.

We are waiting.

Carers might actually make the difference between us achieving a million patients in research or not?

Here are some quick links and ideas of further information that my good colleagues at INVOLVE sent to me after I had posted the above.

If you have any projects looking at carers’ issues in research, you might want to submit something for this year’s INVOLVE conference on 26/7 November.   

Dementia and mental health seem to be the main conditions where there has been discussion about the role of carer involvement in research,  This looks interesting on the Mental Health Research Network (MHRN).   You might also want to check out what Norah Fry has done in the past with carers of people with learning difficulties

 

 

 

 

 

*not an official goal

Dignity and respect in clinical trials: some thoughts

Looking at how we can improve the patient experience of being in a clinical trial is something I’ll be doing a lot of this year as National Director.

It will be one of the objectives of the NIHR strategy to increase research participation that I have just broken off from writing to do this blog.  If you haven’t seen me talk about these objectives already, they look something like this at the moment (out in all good bookshops some time soon!):

  • Supporting choice with accessible information for patients and professionals
  • Promoting participation by increasing the visibility of research in care settings
  • Involving patients in research development, innovation and diffusion
  • Using patient insights to remove barriers to participation and improve their experience of research
  • Championing patient leadership in research locally
  • Developing research active communities
  • Establishing partnerships to promote patient choice

We are already doing some scoping work on the subject through NIHR’s Clinical Research Facilities (CRFs). Patient experience is also being measured as part of the way the new Local Clinical Research Networks (LCRNs) are run.  And a number of my colleagues are immersed in specific projects which aim to gather and use patient insights to improve the quality of care people receive.

All to the good. A considered look at dignity and respect in clinical trials has been a neglected area for too long.

Ensuring that what we do is aligned nationally with NHS England’s patient experience work , the learning that others have already published – such as ‘The Patient Experience Book’ by the NHS Institute for Innovation and Improvement -, and the output of innovators such as Patient Opinion is going to be essential.  Colleagues should be thinking similarly and endeavouring to do the same at a local level.

So what’s the problem you may ask?  A IPSOS MORI survey commissioned by the Health Research Authority (HRA) and published in 2013, found that 82% of people said they were confident or very confident of being treated with dignity and respect in a health research study.  Sounds positive. However, for almost 1 in 5 of us that means there is an element of doubt.

Similarly, people’s reported experiences of being in research generally tend to be good.  But dig behind this some more and there are common themes that emerge around information, consent and professional attitudes; the sense that one is still more subject that participant. Most certainly not part of the team.  And then there’s that whole chestnut of not being thanked for one’s contribution.

I encourage you to look at the ever-excelling healthtalkonline to hear more patients and carers talking about what was good and what was not so good for them. There is no room for complacency and much to leave one restless; enough at least I hope to help you understand that campaigns like #AllTrials are not so much about transparency but about patient rights.

I must admit that I try to avoid using words and phrases such as ‘patient-centredness’ and ‘patients at the heart’ these days.  Do you?  In my opinion they seem to run roughshod over the reality of public involvement which is that it is fundamentally not about ‘you’ or  ‘me’ alone, but about relationships: patient:doctor, patient: nurse etc.   And it’s the nature of these relationships that are critical to sustaining dignity and respect in all types of research.

Today I spoke to the London Regional Meeting of Clinical Research Nurses (CRNs), one of five such meetings being held around the country in the next few weeks to celebrate what they do.  Last year they produced a rather wonderful pamphlet ‘Our Voices’ in which a few  told their story of what they do, how they got there and what they like about their role.  It is simple and straightforward.  Respect for the patient and for carers shines through.   It mirrors everything I have ever been told by patients about how important the clinical research nurse was to their experience.

I think that’s a good point on which to end.  But also a good place to take up the discussion.

Blog: Local leadership in public involvement in research shows the way

The massive restructuring of UK clinical research according to new, local boundaries is a regular topic on this blog. My recent post about whether research was ready for the new localism prompted quite a response.   I doubted then the willingness of new organisations in this transformation to involve the patient voice.

The associated engineering works to make change happen on this scale are significant.  It is a credit to all concerned that – unlike London which you are lucky to be able to traverse at weekends because half the rail tracks are up – clinical trials and studies continue.

Nonetheless it is not easy, particularly for our colleagues trying to ensure public involvement is central to how we do things. After almost a decade of clinical research networks we have become adept at navigating round the equivalent of the wrong type of snow, leaves on the line and the odd elephant sleeping on the track.

I worry that as national networks transition into local networks cross-country travel will be more difficult.  On the other hand a cause for optimism are the new alliances that can be built around the Local Clinical Research Networks (LCRNs)  which will share the same local boundaries as Academic Health Science Networks and the Collaborations for Leadership in Applied Health Care and Research (CLAHRCs).

I would hazard a guess that the lead for this collaboration will come from local areas.

My experience of major change in many different types of organisations is that ‘head office’ can be stunned into inaction by the enormity of what is happening.  It’s actions are often awkward, over-complicated or downright heavy-handed.  Simply because the default position of the centre is to want to intervene and control rather than empower.  It is ironic that while change is often sparked at the top it can be the last to enter the process of culture change and learn new behaviours.

To prove the point I heard yesterday that in the West Midlands a new public involvement forum has been created bringing together representation from the Academic Health Science Network (AHSN), CLAHRC, Research Design Services (RDS) and Local Clinical Research Network (LCRN).  To quote Andrew Worrall, the Chair of the new forum  and an outstanding patient leader, its intention is to:

‘ensure that during this period of transition and policy development in each of the organisations we should work on the development of a shared vision for patient and carer participation, involvement and engagement, (PCPIE), share best practice and jointly invest in and share infrastructure and resources where appropriate.’

The forum is called the ‘Public Involvement and Lay Accounatbility in Research (West Midlands)’ or PILAR for short and will show its public face for the first time at an event on 6th March which I am speaking at (I think).  This meeting will be an opportunity to bring other partners together from the area.  Andrew tells me that a critical factor in PILAR’s formation has been the support of the leadership across all the aforementioned organisations.  But I have no doubt that this leadership focus has come about because of the lead shown by patients and the public as well.  People like Andrew but many others.

In another example CLAHRC North West London are exploring imaginative and innovative ideas to design a more connected system for engagement and involvement. They are working with patient advisers to sketch out some basic ideas to enable better reciprocity – a mutually positive and beneficial exchange – between individuals and the many organisations in their patch.  Initial ideas attempt to address the fact that people don’t live compartmentalised lives and their engagement may be dynamic and fluid across and between organisations and that they are not ‘owned’ by an institution.  Watch this space on this one.

It sounds like the West Midlands and NW London are ahead of the game in beginning to get things in place to make public involvement in research work for local people.  That is: leadership; clarity over function and; the structure or form to make it work.  Perhaps the model will work for you too.  Happy to give you the contact email for more information if you drop me a line with your contact details.

All that remains is to glue the many local parts together so that we still have a national focus where needed.  That seems to be happening in terms of academic and clinical leadership.  But not in public involvement.  It is where the supportive hand of NIHR could make a real difference.

Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’

There’s a big push on #patientdata at the moment.

Leaflets explaining how patient data will be shared in the future are being stuffed through people’s letter boxes.  This is part of an initiative called ‘care.data.’

Medical research charities have meanwhile funded a national newspaper advertising campaign exhorting the benefits of sharing patient data for research. The ‘ad’ shows the face of a boy with the strapline: ‘Hello, I’m Peter: We haven’t met before but one day you could save my life.’

In marketing speak both initiatives – although more the former than the latter – have been accompanied by ‘noise disturbance.’

This includes some very valid criticisms of the leaflet and the way it has been delivered.  The inevitable spoiler campaign.  Not to mention the usual misinformation being reported and repeated without challenge.  Some of the news articles I have read leave you with the impression that sharing data is an entirely new activity across health and social care.  It is not.  What is changing is the way this is managed; for the better in my opinion.

Yet I am torn.  There is that part of me cheering the fact that our health service is making a concerted effort to engage people about data after years and years of dragging its feet.  Thank goodness we have begun to share the data dilemma, and everyone’s role in tackling it.

Then there is the communications professional in me that can tell you – without a shadow of doubt – that direct marketing and national newspaper campaigns are blunt instruments that rarely result in public understanding.  Unless repeated.  Unless part of a bigger and more varied campaign.  Unless pursued over the longer-term.  I read somewhere that the recall rate for national newspaper ads is something like 1 in 5 people and lots of variables drive how high or low that figure is.

I fear I sound churlish but my point is a simple one.

I applaud the campaign.

But we are going to have to work harder at this if we want the noise disturbance to subside into something more harmonious.  And that includes supporting regular conversations with patients and carers in those settings where the importance of sharing their data will feel immediate and personal rather than distant and impersonal.  As well as reminders at key points in their life.

My son just got a birthday card from our local football team – why can’t the NHS contact people when they reach the age of consent to tell them why the NHS is there, what it offers and their responsibility to it?

In the meantime you may find this piece by Dr Geraint ‘Big Data’ Lewis at NHS England helpful.  As well as this excellent graphic from Cancer Research UK about the benefits of sharing data from a research perspective.  I must say, despite CRUK being a monolithic organisation, I am feeling more positive by the day about how it is thinking about public involvement and engagement.

The moral case for public involvement in research is dead, long live the moral case…..

‘I was so angry when I found out how much money was being spent on Multiple Sclerosis research but how little patients and carers had been asked about how it should be spent,’ said my friend and colleague.  She was talking about the spark that lead to her own personal history of involvement in research.

I mention this because, at the moment, I quite often begin my talks and presentations with ‘why’ we do this thing called public involvement.  You can see the latest version of this presentation which I gave in Canada last week here.  The five ‘whys’ I focus on are in the picture below.

Why public involvement

I often talk about how these ‘whys’ are in the ascendant for many organisations now – over and above the moral case which perhaps dominated before.  But my friend’s comment is a timely reminder that morality is alive and well in this debate. Thank goodness.

In fact, for most of us, isn’t it the hand that pushes us away from the shore to begin our public involvement voyage?

 

Young people in research have sent me a postcard, have a look….

The Generation R event – organised and delivered by young people in research – has to be one of the highlights of my year.  You can find a write-up from the September event here.

Today the Generation R crew sent me a postcard about what is happening next.

Note the key messages to emerge from the event with respect to the reporting of research results and the involvement of young people in research design and delivery.  The latter chimes with this year’s recommendation in the CMO’s report.  The former is in tune with the #AllTrials campaign.

Really can’t wait to see what these impressive research champions emerge with in the New Year.

GenRpostcard

GenR key messages

@RBandH Guest blog: Promoting Clinical Research Locally – From ‘OK to Ask’ to Research Changed my Life

Promoting Clinical Research Activities and Opportunities Locally – From OK to Ask to Research Changed my Life

Mark Terry, Research Office, Royal Brompton & Harefield NHS Foundation Trust (m.terry@rbht.nhs.uk)

2013 has been notable for the strong momentum provided by National Institute for Health Research (NIHR) to NHS Trusts in our efforts to raise awareness of research activities to the public, and to promote research opportunities to patients. At Royal Brompton & Harefield NHS Foundation Trust (RB&HFT) we have utilised this national focus on awareness and engagement, to actively promote patient/public involvement in the design of high quality research but also engagement with our research portfolio and wider opportunities available.

RB&HFT is a leading specialist centre for heart and lung research, with an international reputation for cutting-edge research and an identity which positions clinical research as integral to the core mission of the Trust. It should have come as a surprise that, following a local replication of the NIHR mystery shopper exercise , we faired only marginally better than the (very poor) national average for the availability of useful research information. However, prior to these results, it was recognised that we could do much more, and as a result of the NIHR spotlight, a Research Awareness Working Group (RAWG) was established to deliver an initial set of priority actions, followed by the development of sustainable, long-terms plans to ensure that patients/public are empowered with greater access to improved research information. As the group was getting going, NIHR launched the “OK to ask about clinical research” campaign, which focussed our attention upon ensuring that, should a patient or a member of the public feel empowered to ask, they would receive a structured, positive response every single time.

As such, RAWG identified that patient/public facing promotional materials would be required, and should be placed in high visibility areas of the hospital buildings, a staff training needs analysis would be needed to identify which staff groups (clinical and non-clinical) patients and the public pose questions about research to, and a wholesale revamp of the research pages on the corporate website and staff intranet would be needed to act as a current, accessible information source.

We have now implemented an initial action plan and are confident that patients/public will now be able to easily access useful information. Posters with the tagline “today’s research is tomorrow’s care” are present across the hospital buildings promoting our revised webpages and email and telephone contact details of who to discuss research activities and opportunities with, in addition to NIHR leaflets being available in all outpatients waiting rooms, reception areas and PALS. A research sign posting guide was also developed for staff use, outlining the top five places to whom an enquirer should be directed to for more information. This has been used as the basis for short training sessions with outpatient staff, receptionists, PALS officers and switchboard operators. It has also been printed and attached to all staff payslips to ensure blanket coverage, and inserted into Trust corporate inductions packs for new starters. The Research Nurse Forum members have been enlisted to further encourage use of the guide on the wards, and the junior doctor handbook amended to include the guide and emphasise the importance of research and the rights of patients to be given information about research opportunities available to them.

The crowning jewel of these efforts is the revised web pages, which direct visitors according to their needs (patients/public, researchers, and life science industry representatives). These pages contain a vast amount of information in a user-friendly and easily navigated format. All research studies currently open to recruitment are listed along with brief details and contact information. Increased appropriate participation in our research portfolio may result from these listings, but primarily this resource is acting as a unique and vital source of information for patients/public, and staff alike. Internally, a desk-top icon has been placed on every Trust computer (advertised through a research screensaver and email blast out) to enable staff to quickly identify whether the Trust does indeed have research opportunities that are potentially relevant to a particular patient.

We have now wound RAWG down, in favour of a new Research Information Group (RIG), aiming to capitalise on work already undertaken and to co-ordinate ongoing support to promote and raise awareness of research in the long-term. We aim to achieve this through regular updates of live initiatives, a more pro-active approach to publicising research successes and achievements as well as the development of benchmarks additional to the repeat of the local mystery shopper exercise to enable us to measure the impact of these initiatives. Which links in nicely with the new NIHR campaign: “Research changed my life”

CMO as good as her word on young people’s involvement in research

The Chief Medical Officer, Professor Dame Sally Davies, published her annual report today.

Actually, it’s two reports. The first is the usual state of the nation summary of the population’s coughs and splutters. The second, uniquely this year, looks in depth at the worrying lack of attention we have paid to young people’s health. It’s entitled ‘Children Deserve Better.’

You have probably caught some of the news reports about this already. These have focused on things like the re-emergence of ricketts, and the high mortality rate among children in our country when compared to places such as Sweden.

One of the benefits of the nation’s doctor also holding the role of being the nation’s chief clinical researcher (Director of R&D at the Department of Health) is that in her deed and word, the bedside is never too far from the bench, and vice versa. We must make the most of it while it lasts.

So, in the report on children and young people’s health I am delighted to see that Dame Sally has followed up on her comments and highly vocal commitment at the recent Generation R event in September (see previous blogs) by including the following recommendation:

Recommendation 23:
The National Institute for Health Research (NIHR) Clinical Research Network, including the NIHR Medicines for Children Network, should work with children and young people to input to the design of clinical studies in order to facilitate increased participation of children and young people in drug and other trials.

That’s a clear steer to me and others across NIHR and elsewhere to make this happen. I know personally how much Dame Sally is interested in this area, simply by her frequent nudges to me to make sure young people are part of NIHR’s strategy and plans for public involvement and their wider access to research.

Speaking as a pseudo policy-maker the key now is not for us to receive a myriad questions by email but solutions and ideas on how we can achieve this on a larger scale than we have already managed.

For we start from a good base in the UK when it comes to involving young people in research. The model we have adopted in the Medicines for Children Research Network is feted and being copied by many abroad (Canada for one). But there is much more we can and should be doing.

Children deserve better.

Exclusive preview! UK clinical research gets its own TV show…..Downtown eat your heart out @NIHRCRN

So here’s something to make your crumpet and jam just a bit more palatable on Sunday afternoon…Thanks to NIR CRN.

This week Health Sector TV will be broadcasting a programme entitled ‘Clinical Research: Making Patients
and the NHS Better.

The blurb says that this is ‘an important new documentary highlighting how the Clinical Research Network (as part of the National Institute for Health Research) provides the infrastructure that allows high-quality clinical research to take place in the NHS, so that patients can benefit from new and better treatments, and we can learn how to improve NHS healthcare for the future.’

You can view the programme via Health Sector TV on Sky Channel 212 and Freesat Channel 401 on Sunday 20 October at 5.30pm and then it is repeated on Monday 21 October (5.30pm) and Saturday 26 October (12pm).  But you can view it now here!

As ever, the patients steal the show and my thanks to interviewees: Carole Bennett and Katrina Randle.  Also interviewed are:

  • Dr Jonathan Sheffield, CEO, NIHR Clinical Research Network
  • Lydia Christopher, Director for Industry, NIHR Clinical Research Network
  • James Calderwood, Research Nurse
  • me!

I believe you will also be able to view the film online at Health Sector  The film is also be available for healthcare professionals to view online for 12 months at anytime via Health Sector TV.