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 http://www.crn.nihr.ac.uk/crnappaward (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

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.

@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”