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).

NIHR and NAPP announce new award for research engagement in primary care

This morning I was the guest of the National Association for Patient Participation (NAPP) whose annual conference entitled ‘Quality in Primary Care’ is taking place in Leeds today. It marks the end of their annual awareness week.

NAPP’s members are made up of several thousand Patient Participation Groups (PPGs) in GP practices up and down the country. They are an increasingly important network with an important role in bringing the patient voice to general practice primary care?

Judging by the questions from the packed hall this morning, PPGs are made up of an extremely savvy, well-informed and engaged group of volunteers. Simon Stevens would have been impressed.

They certainly put pointed questions to the main speaker this morning – Maureen Baker, President of the RCGP. I found her speech deeply honest and quite compelling especially on the issue of multi-morbidity and the absence of an evidence base for how to deal with this challenge. Indeed, the urgent need too if we are to future-proof general practice.

I can only point to the work of the NIHR Greater Manchester Primary Care Patient Safety Translational Research Centre NIHR GM PCPSTRC as a sign that the issue is beginning to receive closer attention.

Improving the evidence base about the impact of multi-morbidity and many other issues in general practice will only happen if patients and carers are engaged as partners in developing research questions, shaping methodology and helping to spread knowledge. Also in helping to recruit and increase participation in research studies.

Many PPGs are already actively involved in research: raising awareness about recruiting studies; providing feedback to researchers on the patient experience; advising on the design of research and; feeding back the results of work. But we want many more to become active. They also have an important part to play in influencing the commissioning agenda around research, locally and nationally.

So I am delighted that I was with NAPP colleagues today to launch a new national Research Engagement Award aimed at celebrating what’s already happening in PPGs and encouraging more to do the same.

We want to acknowledge the work PPGS are doing to:
– build a research culture locally
– promote clinical research network campaigns
– provide patient feedback and input into research

It’s dead easy to enter. Applications including more details on the entry criteria are available online at (if the link doesn’t work today try again on a Monday).

Entries must be in by 12 September 2014 and the results will be announced in October 2014. Winners get a small cash prize and, of course, national recognition.

It’s an exciting initiative and I hope will be as impactful as the HSJ awards in clinical research and the Nursing Times award will be for clinical research nurses.

Enjoy the rest of your weekend.

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.


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

Or contact the NIHR Research Design Service

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.

@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 (

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.

CLAHRCs could be the superheroes in quality improvement for patients in the UK

Yesterday my day began in Clerkenwell meeting with the new charity, MQ Transforming Mental Health (

It is exciting to feel that we might at last be on the verge of seeing a strong charity profile in mental health research in the UK. But more baffling than ever why our existing mental health charities – some of them household names – have abdicated their responsibilities to fund research of patient benefit for so long.

Ah well, watch this space as they say.

The day ended with a get-together of the Directors of the old and new Collaborations for Leadership in Applied Health Research and Care or CLAHRCS for short (thank goodness).
Life really is too short to mess about with long-winded titles like this isn’t and possibly even shorter depending on what part of London you live in!).

There’s a nice sounding symmetry in that brief synopsis of the day. Which made me think of Clark Kent, which made me think of superman and then superheroes. I didn’t quite use that word in my remarks to the CLAHRC Directors last night. But on reflection I wish I had.

CLAHRCs really could be the superheroes in quality improvement for patients in the UK. But they are going to have to do more than just don a decent costume and fly through the air I am afraid.

The existing nine organisations have been one of the unfolding success stories of the UK health research infrastructure in recent years. Selfishly i would say that great examples of public involvement have emerged, brilliant projects involving patients and the public have been completed and rolled-out, wonderful patient leaders have emerged and are now championing research more widely. In some ways they have been talismanic organisations in our community where the advance of public involvement is often unbearably slow.

Widening lens a little soon brings into focus just how critical they are to bedding in research that can improve people’s lives. They are there to tell us what works and what doesn’t when it comes to implementing research and why. Think of a formula one racing car and the pit-stop crew constantly testing in practice which tyres work best on which surfaces in which conditions. It’s this rigorous testing, evaluation and improvement that leads to winning cars and winning teams. It may not be the perfect metaphor for them but that’s how I see the work of the CLAHRCs.

The thirteen new CLAHRCs are certainly going to have to work for their money when they get underway in January 2014. All £124 million of it to be exact. And the expectations on them will be higher than before.

From a patient and public involvement standpoint, and reflecting on my time on the CLAHRC review panel, I think there are five key questions which they will need to answer individually and collectively over the next five years:

– how can they work more closely together to develop their approach to public involvement?
– how well set-up are they to build the right connections locally to assist them in their work (from Healthwatch to patient groups)?
– how are they going to ensure reach across the whole of their local community including seldom heard and/or hard-to-reach groups?
– where’s the innovation in terms of approaches to public involvement and engagement? – how will they support patients to be leaders in this environment?

If there is a criticism we would fire at CLAHRCs it is that, like much of the infrastructure, there is always an air of foreboding that they could turn all academic on us at any moment. It is time to prove us wrong.

Mental health, life expectancy, these are issues that concern all of us.

To coin a phrase: ‘This is a job for CLAHRCs.’


NIHR and ABPI conference in November on ‘big data’

Click here for details of a National Institute for Health Research (NIHR) and Association of British Pharmaceuticals Industry (ABPI) joint conference on harnessing big data for health gains.  Takes place in London on 21st November.

The more it is used the more I dislike the term ‘big data.’  I mean, how to alienate your public in one go.  That’s why companies no longer use the word ‘big’ in advertising or references to inanimate objects. Hey ho.  I will be on the panel in the afternoon trying to put a human face on data.

Funnily enough on, the ABPI page listing this conference, they also have their statement on the House of Commons Science and Technology Report on Clinical Trials.  Here’s my blog on that report.

ABPI/NIHR Data conference

Take part in a live trial now as part of NIHR’s visit to the British Science Festival #NIHRCOMETtrial

I hope you’ll forgive the fact that what follows is the news release but I am part of the team presenting with Jonathan Sheffield at next week’s British Science Festival and I really couldn’t put it better than this.  The ‘live trial’ is very exciting indeed and the first dip in the water for a concept that we have been bouncing around for some time which I loosely call either ‘Trialwatch’ or ‘TrialInADay’ – using media and new technology to encourage mass participation in studies to answer serious research questions…….

National Institute for Health Research to make debut at British Science Festival with live trial

This September will see the National Institute for Health Research (NIHR)’s debut show at the British Science Festival and the organisation’s first ever live trial.

The British Science Festival is an annual celebration of science, engineering and technology, with over 250 events, activities, exhibitions and trips taking place over six days from Saturday 7 September to Thursday 12 September. The festival, which is hosted by Newcastle this year, will make a big ‘noise’ for science, technology and engineering regionally, nationally and beyond.

This year’s theme is ‘Making Waves’ and is focusing on discoveries, inventions and research that have made an impact on our lives, and more importantly, what will make an impact in future.

The NIHR’s show called “From bench to bedside: how clinical research is making waves in patient care” will take place on Thursday 12 September from 4-5:30pm at Northern Stage, Stage 2 in Newcastle. The show, hosted by Chief Executive of the NIHR Clinical Research Network Jonathan Sheffield, will include the unique opportunity to take part in a piece of live research called The COMET trial which tests reaction speed.

The event is an interactive and fun show aimed at the general public. Alongside the live trial it also includes audience interaction and a piece of original theatre. The event is free to attend and people can book their place online.

People can find out more about The COMET trial which members of the public can also participate in online at:


New webinar series on public involvement in adult social care @NIHRINVOLVE @OfficialNIHR

This is for the mods and rockers among you who spent the last week at the seaside and missed the twitter announcements….

Great to see this focus on public involvement in social care.

‘Get all sides of the story’: public involvement and participation in adult social care research

The NIHR School for Social Care Research (SSCR) and INVOLVE are launching a series of webinars starting on 13 September 2013.

Learn about:

  • different research methods and approaches to help you address the specific and unique concerns of adult social care research with a range of different groups
  • why public involvement in research is important, the difference it can make to your research and hear about examples of how people are getting involved.

Sign up and join the webinars which draw on SSCR’s Methods Reviews, INVOLVE’s experience and the expertise of researchers actively involving members of the public in their research.  The series will be relevant to researchers and practitioners (among others) who are new to social care research and public involvement in research as well as to experienced researchers looking for new ideas and approaches. It will also be of interest to those who want to find out more about research.

Webinar 1: Public Involvement in social care research: An Overview

Friday 13th September 14.00 – 15.00 (register by Friday 6th September 2013 – places are limited)

This first webinar provides an overview of public involvement in research:

  • ‘Context’: Dr Michael Clark (Research Programme Manager, SSCR) introduces the webinar series, setting out the context and SSCR’s methods reviews.
  • ‘The Need’: Simon Denegri (Chair of INVOLVE, NIHR National Director for Public Participation and Engagement in Research) provides an introduction to the difference between public involvement in research and engagement and how they overlap.  He will outline why public involvement is important and how it makes a difference.
  • ‘Good practice’: Tina Coldham (service user; member of INVOLVE) offers advice and tips on things to consider when involving members of the public in research. Tina will highlight practical examples and signpost to relevant resources and information.

The webinars will run over the next 6 months. Future seminars will be topic based and aim to cover:

  • Research with black and minority ethnic people using social care services
  • Research with d/Deaf people
  • Research about social care services for visually impaired people
  • End of life care research methods
  • Interviewing people with dementia
  • User controlled research



It’s NIHR Friday: NHS Trust research activity stats published

You didn’t think I’d forget NIHR Friday did you?

So the National Institute for Health Research Clinical Research Networks Co-ordinating Centre (NIHR CRN CC), together with The Guardian online, has this week published its annual performance tables for research activity in each NHS Trust in England for 2012/13.

You can find the figures for your local NHS Trust here. For each Trust data is provided on the number of clinical research studies recruiting during the year, along with the overall number of patients recruited into all studies.  Comparative figures are provided for 2011/12 so you can see whether activity has increased or not where you live.

Overall the news is very good indeed.  More than 630,000 people were recruited into clinical research studies.  That’s a 7% increase on the year before.  During the year NIHR CRN supported more than 4,200 studies and that’s a 12% increase on 2011/12.  There are some nice, simple summary reports available through the NIHR CRN CC website here (look for the pdfs at the end of the page).

A good year then.  But it can get better.  Hence the importance of the ‘Ok to ask’ International Clinical Trials Day (ICTD) campaign this year.

This week I was fortunate to see the early feedback and results from the campaign (in fact some of them are in my Leeds presentation which I posted yesterday).  There is much to celebrate.  You can be sure we will be continuing with the theme and perhaps we need to join-up the performance stats and the ‘Ok to ask’ activity in some way?  How about a ‘Rapid Reaction Ok to Ask’ taskforce to focus on the areas where we need to do most work?

Have a good weekend.



It’s NIHR Friday – Public involvement: did the research network move for you?

NIHR Clinical Research Network Survey

Patient and Carer (Lay) Involvement in Research: Your Experience

The National Institute of Health Research (NIHR) Clinical Research Network (CRN) Patient and Public Involvement Steering Group is running a survey to capture how being involved in research impacts on patients and carers.

You should take part in this survey if you are a patient or carer (lay person) who is involved as a research partner or collaborator at one of the Clinical Research Networks.

We will produce a report summarising the findings from this survey.  We will use the information that you provide to encourage more people to get involved in research and to improve the experience for all individuals.  We will not be identifying individuals by name in the report.

If you are interested in taking part, we would like to hear your views.  Please click here to complete the online survey:

The deadline for completing this survey is Friday 26 July 2013.


Blog: Why the NIHR Journals Library is important from a patient perspective

NIHR Journals Library Launch 20th June 2013

As promised here’s my speaking notes from the launch of the NIHR Journals Library today.  Good to see the Minister, Earl Howe, there (I tweeted his remarks earlier) plus the CMO, Professor Dame Sally Davies, Trish Edwards, Asst Editor from the BMJ etc.,

  • Public involvement in UK health research
  • NIHR wedded to public involvement as a core principle from the beginning
  • Six years have shaped and defined some common-sense models for involving the public
  • Have avoided something that could have been a ‘smothering cloak of acceptability’ instead are close to achieving a ‘partnership focused on improving value and quality.’ But lots still to do.
  • Quite literally thousands of patients, carers and others are joined in this endeavour with us (like Leicester yesterday!)
  • International leadership – lots of traffic with other countries about public involvement and sense that our developing partnership with the public might just be giving us an edge
  • NIHR Journals Library approach is a continuation of this agenda

What the NIHR Journals Library means for patients and the public

Open publication of the complete results….

  • Aside from demonstrating how public money has been spent and with what impact, a number key benefits, including one that you might not have thought of on your way here…..
    • Help patients, carers and relatives understand research, indeed the research underpinning care and treatment
    • We know people are increasingly looking for such information and trying to make sense of the mass of info already out there
    • Inform policy-makers and clinicians and support adoption of new and better treatments

Also about helping researchers and patients to better understand how different models of public involvement in research do or do not add value to…

  • Building the evidence base around methodology for public involvement
  • Important for other journals to begin to follow approach of NIHR Journals Library
  • Enabling sharing of knowledge and understanding

The NIHR Journals Library commitment to public involvement

  • A plain English summary will accompany all research published in the library
  • Authors will be asked to describe patient and public involvement in their study
  • Ref INVOLVE work to produce a standard approach to lay summaries across NIHR

From willing to informed research citizen

For selected projects we will also produce stand alone summaries intended for a public audience

One of tasks going forward it to embed public involvement in how the above pieces are produced.

This is just the beginning so watch this space….





NIHR Friday: CLAHRCs Selection Panel announced plus NIHR Journals Library opens

I was just going to tweet this but since it is in a downloadable pdf and not actually on the face of NIHR’s website, I thought it would be helpful to post it – the membership of the Collaboration in Leadership for Applied Health Research and Care (CLAHRC) Selection Panel:

Professor Huw Davies (Chair) Co-Head of School, School of Management, University of St Andrews,Scotland, UK
Mr Simon Denegri National Director for Public Participation and Engagement in Research, National Institute for Health Research and Chair, INVOLVE, London, UK
Professor Cy Frank Faculty of Medicine University of Calgary, Calgary, Canada
Professor John Gabbay Emeritus Professor of Public Health, University of Southampton, Southampton, UK
Professor Gillian Leng CBE Deputy Chief Executive at NICE and Honorary Senior Lecturer at the London School of Hygiene and Tropical Medicine, London, UK
Professor Steven Lewis President Access Consulting Ltd, Saskatchewan, Canada Adjunct Professor of Health Policy at Simon Fraser University, British Columbia, Canada.
Professor Tom Walley CBE Director, NIHR Evaluation, Trials and Studies, Director of the HTA Programme, University of Liverpool, Liverpool, UK

The original details for the CLAHRC competition can be found here.

And in other news this week the NIHR has launched its own ‘Journals Library.‘  I quote from the website:

“The NIHR has launched a new Journals Library, providing full publication and open access to an extensive body of health research. It comprises a suite of five programme-specific journal series, published online, which are fully searchable and provide a comprehensive record of work funded by these NIHR programmes. Building on the success of the existing Health Technology Assessment journal, the library will give accessible full publication of  findings of the research commissioned by these programmes and will provide an important permanent and comprehensive record of the work which has been funded.”

The official launch is on 20th June and I shall hold back a little on what this means for patients until I have spoken at the event.  It is very exciting and I am pleased NIHR continues to lead on practical action to open up research outcomes to everyone.

Keep track of your medicines with ‘My Medication Passport’ c/o NW London CLAHRC

I seem to be visiting more CLAHRCs (Collaboration for Leadership in Applied Health Research and Care) next week than in all my time as a boy looking for new school shoes.  One of the CLAHRCs unfortunate enough to be visited by me is Northwest London.

They’ve just launched a brilliant new tool to help patients keep track of medicine changes and improve communication with health professionals and others. ‘My Medication Passport’ is available in hard copy and can also be downloaded as an app on your smartphone.  The initiative is an idea that came out of the CLAHRC’s public involvement group and is already being used by 5000 patients across Imperial College Healthcare NHS Trust.

The ‘My Medication Passport’ web pages are bursting with good information to accompany the launch including patient testimonials and a video.  Really, really good and just the sort of thing that has been emanating from CLAHRCs. Here’s hoping this blog can help a little in putting it in the hands of more patients for whom medication changes are a real care and safety issue.

Since we are talking about innovation the Guardian did one of its online discussion today, this time on the role of the Academic Health Science Networks (AHSNs). Panelists included Jonathan Sheffield from the National Institute for Health Research Clinical Research Networks (NIHR CRNs).  The discussion can be found here although those nice people at the Guardian normally do a summary too at some point.

It’s NIHR Friday inc. new publications, a competition and NIHR CCF makes the Grade with patients

Yes, it truly does seem as though Friday should be dubbed ‘NIHR Friday’ given the propensity for my erstwhile colleagues to push info out on the aforementioned day.  The clutch of interesting announcements this week include:

Publication of the NIHR Annual Report for 2011-2012.  You know, I’m sorry if this offends some people but I’m proud of what the UK has created in NIHR and I’m proud that I work for it.  I’m also proud that a publicly funded organisation should be arguably the world’s leader in its support for public involvement in research.

I’m only part of my way through these but you can view the 21 entries to the NIHR New Media Competition and vote for your favourites by pressing the ‘Like’ button as and when.  The aim of the competition is to create videos that will enthuse people about research.  Loving their work so far.  You need to vote by April 30th and the winners will be announced in early May.

The NIHR Central Commissioning Facility (which is like the organisational Michael Grade of NIHR) has just published its patient and public involvement plan for 2013-2015.  And very good it is too.  In an exclusive email to me (not!) CCF say: ‘Over the next two years, we will be looking for some of our public contributors to get involved in helping us to develop and deliver projects in the Plan. At this stage, it would be useful to identify public contributors willing to express their interest in this process. Initially this would commit people only to joining an email distribution group that we would then come to for input as we begin to develop the delivery of projects and activities in the Plan.’  More details on the website.

And, any time after about Wednesday next week, I guess ‘It’s ok to ask’ about International Clinical Trials Day and some of the plans for that.

Enough already.



As a public contributor to the work of the Central Commissioning
Facility (CCF), I hope you will be pleased to hear that we have just published
CCF’s Patient and Public Involvement Plan 2013 to 2015.

The Plan is
available to download from our website along
with a report of the consultation that took place in January 2013 and a
background report. (If you would prefer to receive paper copies of all or some
of these documents please email me,,
with your postal address.)

Over the next two years, we will be looking
for some of our public contributors to get involved in helping us to develop and
deliver projects in the Plan. At this stage, it would be useful to identify
public contributors willing to express their interest in this process. Initially
this would commit people only to joining an email distribution group that we
would then come to for input as we begin to develop the delivery of projects and
activities in the Plan.

If you wish to be part
of this distribution group please do not reply to this message but instead email

If you have any questions or queries please don’t
hesitate to get in touch.