INVOLVE

Two blogs in one day. Blimey. I’ll be giving away small packets of face cream or toys with the next issue at this rate.

Someone asked me recently whether co-production was going to be the only thing that mattered in the future. Is all that is currently known as public involvement going to be painted over as co-production ? In the way that Prince re-branded himself as the artist with no name. Would we be saying to friends, family and colleagues in the future ‘I’m pro co-pro, are you?’

Well, no, I am sure you will be pleased to hear.  Truth is that co-production is emerging as an approach that looks to have increasing utility in getting people to work differently in health research. It is another string to our bow. Part of the secret of its future success will be identifying its relevance and appropriateness, the contexts within which it will work best and with the best results.

As already presaged in this blog some time ago, INVOLVE has been working on some co-production principles building on previous work particularly in the social care field. Those principles are now finished and have been published today and you can find them here.

And in short-hand those are principles are as follows, but I won’t spoil it by saying the rest. Read and enjoy.

Key Principles
Sharing of power – the research is jointly owned and people work together to achieve a
joint understanding
Including all perspectives and skills – make sure the research team includes all those
who can make a contribution
Respecting and valuing the knowledge of all those working together on the research
– everyone is of equal importance
Reciprocity – everybody benefits from working together
Building and maintaining relationships – an emphasis on relationships is key to sharing power. There needs to be joint understanding and consensus and clarity over roles and responsibilities. It is also important to value people and unlock their potential.

Question: How many patients does it take to change a lightbulb?

Answer: No one knows, they are so rarely asked.

The irritating thing is that even when patients are asked to change a lightbulb, they are not given the help and support to do it effectively.

It’s a bit like asking someone to change one of a thousand lightbulbs in a chandelier hanging from a high ceiling in a grand mansion. No one tells you which lightbulb we are changing. Even worse, there’s not a set of ladders or abseiling rope in sight to help you get up there. Quite often you also find the thing has been booby trapped so the whole fitting smashes to the floor.

We need to get serious about the learning and development agenda in public involvement. It’s the proverbial step ladder to enabling and empowering patients so that they feel confident in their abilities and its potential contribution.

Likewise we need to get serious about the support we give to researchers. So that public involvement doesn’t feel like a distraction but an important step in ensuring their research is scientifically valid.

Now, the way this debate normally goes, everyone bangs on about being learner-centred and then in the next breath they plug their own training course. And there are some seriously bad courses – well intentioned but truly terrible – being provided.

Yes, we have to be learner-centred but in NIHR at least we also have to take a system-wide approach to providing learning and development and ensuring its quality. As you would in the best run companies and organisations.

Yesterday INVOLVE published the report from its working group looking at learning and development issues. We have made recommendations to the NIHR on overall strategy, what needs to happen in organisations and, lastly, how researchers and research managers should be tackling this. We also suggest some universal principles for learning and development.

If I had my way we’d have an INVOLVE accredited induction and training course provided as standard across the NIHR. But people tell me that’s not possible. I’m not sure why. Perhaps I’m just Jeremy Corbyn in disguise.

But think on this. The Americans are coming!

Yes, a few weeks ago an American outfit contacted me to plug and sell their shiny new course in ‘public engagement.’ I am sure it’s fine. But afterwards I thought, why aren’t we doing this? Why aren’t we exporting our knowledge in this way? We have so much to offer if we can only get our stuff together.

You can find the report here: http://www.invo.org.uk/wp-content/uploads/2015/09/FINAL-NIHR-LD-report-July-2015.pdf. And this is the summary of recommendations:

Across the NIHR it is recommended that:

 All learning and development for public involvement in research:
o provides ongoing support in three key areas – administrative, research and

personal support

o is accessible to all

o is appropriate and relevant to the task

o acknowledges individual readiness to learn and builds on existing knowledge and abilities. (Section 2.2).

At NIHR-wide strategic level it is recommended that:

  •  The NIHR supports regional and sector-wide collaborations for the delivery of learning and development opportunities. (Section 2.4).
  •  The NIHR funds a national lead to provide a national and strategic role for learning and development (this could be based within INVOLVE). (Section 2.4).
  •  The NIHR allocates funds for research to evaluate the nature and impact of learning and development to support public involvement. (Section 2.5).At organisational level it is recommended that:
  •  All NIHR organisations allocate resources and provide staff with induction training on public involvement in research. (Section 2.2).
  •  Learning and development for public involvement is resourced, embedded and promoted as part of organisational development within all NIHR funded organisations. (Section 2.3).
  •  There is clear senior leadership responsibility and accountability within organisations for the implementation and review of learning and development for public involvement in research. (Section 2.3).
  •  NIHR research commissioners demonstrate their commitment to public involvement in research by stating what they will provide to support learning and development. (Section 2.5).At researcher and research manager level it is recommended that:
    •  Researchers and research managers work with public members to develop learning and development plans for public involvement to support themselves and those they involve. (Section 2.2).
    •  The learning and development needs for all public involvement roles are identified and reviewed. (Section 2.3).
    •  Members of the public are given clear information, advice and support to enable them to carry out their roles effectively. (Section 2.3).
    •  Members of the public are encouraged, supported and enabled to take responsibility for their own learning and development needs. (Section 2.3).
    •  Researchers report on learning and development for public involvement as part of their reporting to research commissioners on public involvement. (Section 2.5).

Simon Denegri Sent from my Work iPhone
You can also find me at:
Twitter: @SDenegri
Blog: https://simondenegri.com/

Herewith a copy of the announcement that you will also find on the National Institute for Health Research (NIHR) and INVOLVE websites to day about the award of the new INVOLVE contract.  This means INVOLVE now enters its second decade of being fully funded by the NIHR and the only such body of its kind across the world.  An incredible achievement. But what this announcement says is that no one is resting on their laurels.  It is time to build on the great work that INVOLVE has already done and for it to work with its many partners so that one day public involvement is second nature in everything that the NIHR and its people does.

Formal announcement as follows:

13 August 2015

The University of Southampton has been awarded a four year contract worth £3.2 million to deliver the NIHR’s Centre for Patient and Public Involvement, Participation and Engagement, taking account of the Going the Extra Mile report.

To date, INVOLVE has delivered knowledge, guidance and support that is highly respected and of immense value to the public and researchers alike. It has established an international reputation for excellence and leadership in public involvement in research.

Based in the Wessex Institute at the University of Southampton the new contract will start on 1 February 2016. INVOLVE will build on its strong foundations of providing support and expertise whilst evolving the way it delivers it services. Through a new partnership with the NIHR Research Design Service, INVOLVE will provide leadership in public involvement in research at national, local and regional levels.

Professor Dame Sally C. Davies FRS FMedSci , Chief Medical Officer and Chief Scientific Adviser at the Department of Health said:

“INVOLVE represents our core values, with patients and the public being at the heart of everything that we do . This new contract will provide continuity for the superb work already underway, with new and greatly improved links to the regional and local expertise of the NIHR Research Design Service and across the NIHR.”

Simon Denegri, Chair of INVOLVE said:

“This is great news for the public and for research. The ‘Going the Extra Mile’ report underlined that, as the NIHR community of patients, carers and the public grows, we must work differently to better support their contribution to research. The Wessex Institute will provide a strong foundation for the work of INVOLVE, enabling it to build upon its success while ensuring it continues to innovate and think strategically about advancing public involvement across the NIHR. The partnership with the NIHR’s Research Design Service means we can strengthen the practical support and advice available to colleagues locally, and better assure its quality. I am excited about these new arrangements and look forward to judging their success on whether they have resulted in a stronger patient voice in NIHR research in five years’ time.”

The announcement of the INVOLVE Centre contract comes a few months after the publication of the ‘Going the Extra Mile’ report and recommendations following a year-long strategic review of public involvement across the NIHR. The review panel welcomed the NIHR’s on-going commitment to supporting INVOLVE over the last ten years. It also provided expert input into how INVOLVE might be remodelled for the future so that it continued to meet the needs of the public, researchers and other partners in a rapidly changing health research system.

Click here for more information about INVOLVE http://www.nihr.ac.uk/about/involve.htm

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/

A small island has appeared off the coast of Pakistan following the tragic earthquake there last week.  The consensus of scientific opinion is that, before long, this island will disappear without trace.  In the meantime it is an interesting curiosity, attracting quite a gaggle of geologists and geographers.

I wonder if that is how INVOLVE was viewed by the science establishment all those years ago when it first came together? Soon to disappear, I mean.

Well, we didn’t. In fact we are now in our seventeenth year. And we are not so small any more. So there!

Last week INVOLVE held its annual members’ symposium, an opportunity to re-group, share and think about the future.  It is always telling what bubbles to the surface on these occasions.  I even sketched a cartoon to help me think about the themes afterwards.

IMG_0079 (2)

‘Integration’ was one of the most commons words used in our discussions over the two days.  No, not the integration of health and social care.* But, the urgency with which patient and public involvement across health research needs to be integrated or connected at the very least; the dangers in terms of waste, duplication and missed opportunities, if they are not.  Public involvement in research consists of many islands dotted across the system.  Some are well-connected.  Others less so.  We must build bridges quickly between those that are not; even if means settling for pontoons rather than suspension bridges.

Changes in the NHS loom large.  We were treated to two excellent presentations about ‘health and wealth’ and also the Academic Health Science Networks (AHSNs).  AHSNs are the new kids on the block with the given task of helping to generate.  But they are ending up with a different job description and less money than was originally hyped up two years.  So be it.  We’ve been there and done it many times as patients and the public.  However, their emphasis on partnership and collaboration plays into our hands nicely if we can just get through that door marked ‘academia – do not disturb.’ And persuade those monsters from the deep to break the waters with some funding.

We are hesitant about the idea of patient leaders and/or patient leadership.  Or rather, we are concerned about the speed with which patient-driven notions of leadership are fast becoming bastardised and commoditised by the NHS in its anxious search for accountability and legitimacy.  Capsizing looks inevitable but not complete submersion if we can get a boson’s line to it fast enough. Should we succeed I think it could sail from port again but stronger just like INVOLVE did all those years ago.

As always there is he frustration that others in the NHS can not see what we can beyond the fog behind our island.  Who knows what the charities are doing hanging on by the anchor chain and abandoning all hope of independent thought.  Roll on the breath of fresh air that walks in the guise of future NHS leaders who truly understand involvement.  They will come I feel sure.

Yes, we talked about language and definitions (c’mon, if we didn’t it would be like Christmas Island without its red crabs).  We agreed that precision in our language can give confidence to others.  That we shall seek to do, while avoiding those pincers of course!

We also talked at length about standards.  What does good quality public involvement look like?  Should we have a Chief Inspector of Patient and Public Involvement who can be CHiPPi with those who fall short? No. of course not.  But we think there might be mileage in us producing some principles and a framework that helps people identify quality in different contexts.  We can not instruct. We can, however, help others make sense of where they stand and surely that is far more empowering, Anyway, watch this space for an excellent paper summarising what we have discovered in terms of standards and values and principles.

I rather enjoyed the truncated session in which we were asked to identify the things we wished we had known before getting involved in public involvement. I said I wish I had known how much support and help was already out there ready to come to one’s aid.  More simply, that a passion shared is change in the making.

So, give INVOLVE a call today.  Look at the website. Or follow it on Twitter @NIHRINVOLVE

No PPI person is an island in our book.

*By the way does anyone else view health and social care integration as I do – like the merger of Lloyds and TSB. Resulting in a poorer service to consumers over many years before being split into two once again?