Search Results for: AHSNs

I have written a fair bit about Academic Health Sciences Networks (AHSNs) in the past. Not always favourably I’ll admit. But that was then and this is now.

I am pleased to report that, as of May, the 15 AHSN have been re-licensed/re-designated/re-booted (select as necessary) for another five years with NHS Chief Executive, Simon Stevens, describing them as a catalyst for change in the innovation landscape.

They have also produced a rather nifty booklet entitled ‘Guide to the AHSN Network 2018: Our collective impact and future plans.’ It was launched at the NHS Confederation today and includes some great examples of innovation that AHSNs have had a role in developing. From medicines safety to cerebral palsy. I encourage you to take a look.

I was pleased to see Mike Hannay, Chair of the AHSN Network and managing director of the East Midlands AHSN, use his blog on the NHS Confederation website today to call out the important role of public involvement and engagement in this success to date. Mike Hannay describes this as one of the ‘untold stories’ and I would agree.

The role of public involvement and engagement in the AHSNs continues to be under-stated. Individually and collectively they have done some great work. This booklet ‘Exploring Patient and Public Involvement in a Digital Age’ is an exemplar.  Where there has been a lack of definition it is perhaps only natural given their stage of development. But with some careful thought they could be the cutting edge of public involvement in some key areas of weakness for our community such as innovation adoption.  The sorts of areas which would enhance the UK’s attractiveness on the global stage.

So the re-licensing gives them an opportunity to work with patients, carers and the public and think creatively and ambitiously about the future, to chart  in coherent terms the role that involvement and engagement will have. Key criteria for success will include: clarity of mission, strong leadership from top to bottom, appropriate resourcing including people, the setting of clear expectations with partners and a willingness to partner with patient organisations locally and nationally.

I understand that we will hear more about the AHSNs future programme and plans over the summer. Let’s hope the next chapter is an even better one.

Today I have been in Bolton to kick-off the NHS North West R&D Conference. 170 delegates – including patients and the public – getting together over two days to talk research. A great event and I hope they feel I got them off to a good start with my talk.

It occurred to me afterwards that I have yet to be invited to attend an event hosted by one of the 15 Academic Health Science Networks (AHSNs). These are the bodies supposedly set up to bring local and regional partners together to drive innovation in the NHS.

So where are they? No, really, I mean, where are they?

Any time I visit a place I ask what’s happening with their AHSN. Almost without exception it triggers much shrugging of the shoulders and the sort of nervous chatter that only Scoop out of ‘Bob the Builder’ can better. I can certainly tell you from
a public involvement point of view they have barely made a mark.

Are we to presume they are a failure or, at the very least, failing?

Poorly conceived, their role badly defined, working to a short-term agenda and often without focus or leadership. The results seem more variable so far than a bunch of scones made by an early evictee from British Bake-Off.

When I hear what’s happening in local public involvement, I think we can be forgiven for feeling a sense of injustice that such pet initiatives would appear to get an easy ride. If only, if only….

In February last year I wrote that AHSNs might be an opportunity to shift the consensus around the innovation agenda. In fact I thought that was part of their role! But the only shifting I can see is bottoms on seats.

So if they are failing, can we at last have something truly
innovative: an independently governed democratic space in each region where innovations can be co-produced and co-diffused?

15 ‘innovatoriums’ run as social enterprises and in the public interest. Where there is equity of access, equality between the partners and a mutual sharing of the benefits.

Fanciful? Perhaps. But given what’s happening with the AHSN
experiment, what have we got to lose?

I am in Alberta, Canada.  I have been invited over to share the UK’s experiences in developing public involvement in research.  As ever, it is the similarities and not the differences between our two experiences that strike you on a visit like this. More about those another time.

My good friend, Derek Stewart, yesterday wrote an excellent blog with his thoughts on what we are trying to achieve through public involvement. He is right. Public involvement, participation, engagement, these are all a means to an end.

I wonder whether our real aspiration should be the development of ‘research active’ communities that lead to a healthier population.  On the 50 minute plane trip from Edmonton to Calgary yesterday I tried to draw/visualise what would define that ‘research active’ community with ‘healthier populations’ in the centre circle:

research active communities

Well, it is a rough sketch and I’m no Tony Hart.  This is what was flying by the window by the way:

Edmonton to Calgary

I very much believe that by community we could just as well be talking about an organisation as a neighbourhood or a patient population.  The term embraces all its citizens as well whether they be patients, carers, the public, researchers, clinicians, etc. etc.  Anyway, in a ‘research active’ community the following features would seem to me to be in the ascendant (this is what I wrote in the smaller, outer circles):

  • Research is visible to its members
  • Research priorities are defined collectively
  • Citizens help shape research design
  • There is learning through the communities’ experience of health and wellbeing
  • Citizens have clear opportunities to participate in research and are encouraged to do so
  • Research is central to the provision of health and social care
  • Its members are working in an equal and respectful partnership
  • Citizens can access and use research evidence as part of their care and treatment
  • Citizens share in the governance of research

Alberta is going through a process of rapid restructuring and re-organisation of research across the province.   It is not dissimilar to what is happening across the 15 local geographies in England where we are seeing Academic Health Science Networks (AHSNs), Collaborations for Applied Health and Research and Care (CLAHRCs), and Local Clinical Research Networks (LCRNS) occupy the same patch.

ahsns

Their collective mission is to work with their local NHS and other partners to build research and innovation into the way we deliver health and social care of patient benefit.  So, what happens between these new organisations will be more important than what happens within them.  Partnership, integration, connectivity will be the name of the game.

Similarly for public involvement a process of re-purposing within these areas must happen in my view.  We still have much to do to ensure public involvement is improved in research prioritisation, design and delivery.  But we must not become too introvert.  It will be important that we look out of our windows, work with patients, the public and our public involvement colleagues across the way, and build the connections that will grow communities that are active in research and healthier for it.

Dear Colleagues,

I understand that you have just received your letters from the Department of Health confirming your designation as an Academic Health Science Network (AHSNs) subject, no doubt, to a few refinements. Congratulations.

Me and my colleagues from across the world of public involvement are looking forward to working with you to get innovations out to patients and the public more quickly and efficiently.

In making this happen, we hope that the AHSNs – independently and collectively – will embrace public involvement as a core principle for the way they operate and from the beginning – as the National Institute for Health Research (NIHR) has done so successfully since 2004/5.

From a strategic point of view – and based on our experience – public involvement is an essential partner in delivering:

– accountability to your community and air cover for what you do
– value in ensuring that the work you undertake fits with the needs of your population
-efficiency, not least in making you more effective in engaging the public and getting them to take part in what you are doing
– innovations that actually work for patients and carers in hospital and at home not just in the lab

In the current climate and amid the concern to ensure a more accountable health system it would seem logical to embrace a partner – the citizen – who can help make this happen. If I am honest many patients and public I talk to think that AHSN will be another of those great British academic carve-ups. Indeed, often it is the institutionalisation of innovation and not our NHS that holds up progress of patient benefit. So it would be great to prove us wrong.

The wonderful thing – and you will appreciate this given that innovation is often about smart adaption of what exists to fit a new context – is that you have a wealth of public involvement experience to lean on. Not just in NIHR but in our clinical research networks, CLAHRCs and many patient groups as well. We don’t just know how to do this stuff, we actually know how to do it very effectively and this is why it is getting increasing attention from abroad. We know that we can make a real difference in the AHSNs as well.

For the last few weeks up until yesterday, I and many others have been working on the ‘Ok to ask’ campaign for International Clinical Trials Day (ICTD). Over 200 hospitals took part with many inspiring and exciting examples of people coming forward to take part in research but also being innovators in their own right. From children to old people, the desire is there to help they just need to be asked. So I know you will want to be at the forefront of what we do next year.

Finally, a small but important point. Few people will know of your existence in your area. The very term AHSN does not lend itself to dialogue except perhaps between its collaborators. Perhaps Networks can begin to demonstrate their ability to think out of the box by calling themselves something that is not an acronym,that will resonate with people.

I can’t wait to get started with you.

Best wishes,

Simon

Top initiatives today…..

Care to learn to care better.  

The NIHR Dementia & Neurodegenerative Diseases Research Network (DeNDRoN) today launched their new ‘Patients in Research’ infokit.  It’s an excellent free resource showcasing work from across health and social care, stories, ideas, tips and tools.  This great piece of kit is all part of a larger effort by DeNDRoN to: create a research minded culture across the NHS; bring together patients, researchers, clinicians and staff to work in partnership and; integrate research into the care and treatment people receive.   

You are never too old to learn.

Talking of learning, if you go to Macmillan Cancer Relief’s ‘Learn Zone’ you can now register for their ‘Building Research Partnerships’ course.  First developed in cancer it has now been developed to be relevant to all conditions.  It has an excellent reputation.  In fact I have signed-up to attend a course myself.

CLAHRCs Learn Well

Those in London who speak quickly might get that very poor pun in the headline.  Our CLAHRCs have been a flotilla of brilliance in public involvement.  So let’s keep it that way.

In May people will be putting in their bids to run the second round of Collaborations for Leadership in Applied Health Research and Care (CLAHRCs).  Recall that the Government announced squillions of ‘£s’ for these earlier in the year.  Public involvement will be an essential component of the bids as it is for all NIHR stuff.  So, because the tender document was so poor in what it said about PPI, some additional PPI information has been added to the FAQs today.  And if that doesn’t get you taking it seriously, just remember you never know who’ll you’ll face when it comes to the panel!

AHSNs could do better….

Our Academic Health Science Networks (AHSNs) have somewhat more to learn when it comes to public involvement.  However, some are steaming ahead like the West of England AHSN.  If you don’t want your Network to become the ‘AHSN Wenger’ of innovation with no prizes at the end of the season then check out the PPI section of the West of England’s prospectus.

Learning to love one another…

Pharma and the ABPI have taken a bit of a beating lately.  So credit where credit is due.  They now have a Patient Organisation Forum section on their website which includes details of the last meeting of the Forum.  I aim to get to the next one if I can.  It’s a start.

So there I was, reclining on my sofa, recovering from the worst chest infection known to mankind. (Note deliberate reference to the male species there.) And I had decided to use my temporary ill-health to fill some gaps in my movie knowledge.

Watching the MATRIX and MATRIX Reloaded it occurred to me that, faced with such monumental organisational changes in the NHS, wouldn’t it be great to be able to put them into slow motion. Or, better still, catch the new and reformed bodies between our fingertips and re-engineer them particle by particle. In one or two cases we might even want to carry out a bit of casual vaporisation. Keanu Reeves eat your heart out.

Just to recap. Alongside the tendering exercise for the second round of Collaborations for Leadership in Applied Health Research and Care (CLAHRC) [closes in May], we are also seeing the restructuring of the current clinical research networks into 15 integrated research networks. Both of these will match areas covered by the new Academic Health Science Networks (AHSNs). All this will happen like a well choreographed piece of organisational ballet or amazing planetary alignment to keep the sci fi analogy going.

AHSNs will bring together universities, industry, the NHS and other partners to improve innovation and the diffusion of new ideas in our health system. That’s the theory anyway.

From nothing, AHSNs now loom large in the same way that a flotilla of invisible alien spacecraft used to appear on Lt Uhura’s radar screen in Star Trek all those years ago. Dark, out of range of our phasers, and who knows what they will eventually look like when they do appear. It’s enough to make you want to warp factor out of here.

The key question is whether AHSNs will really be about radically shifting the way we innovate. Or simply a new plundering ground for those who inhabit our ivory towers. How they view you and I, the citizen, in all this, will be the most telling aspect in my opinion.

Prior to Christmas I was fortunate to accompany some colleagues from AHSNs on a study trip to the Southern Region of Denmark to see how they approach innovation. Three things struck me as we visited the innovatorium, university, hospital and town hall of Odense.

First, how they have begun to shift people’s thinking in terms of what partnership and collaboration should look like to improve innovation. Not least, and very simply, that everyone should work together in a communal space both physically and metaphorically. Second, that they have bitten the bullet and decided not to go at a long list of priorities but to focus on 2 or 3 with a key one being what we would call tele-health. Third, that the role of citizen as co-producer is central to their endeavour from giving it political legitimacy and deciding on the investment, right down to design and execution.

Reading a recent feature on Scandinavia in The Economist I was struck by its comment that the Danes are driven by pragmatism rather than ideology. Form follows function. It’s about getting the job done whether in terms of introducing a new treatment or launching Angry Birds. By the way is there a version of this yet called; Angry Patients?

Given that we tend to behave according to the ‘letter of the law’ in the UK it is unfortunate that the tender document for AHSNs did public involvement such a disservice in the first instance. Only now are we beginning to recoup the ground that was lost in those early months. Yet I am now quietly confident that we will be able to network and support the public involvement work of AHSNs when they come into being from April. And, of course, there will be considerable expertise and knowledge in our CLAHRCs that they can and should tap into.

So those thinking through their CLAHRC bid right now should be under no illusion; the standard and quality of public involvement in their overall design as well as their more detailed plans for the future will be integral to their application’s success. It will also have important knock-on effects for the organisations they work with.

But once the new world has taken shape we will still need leaders including patients to be brave about innovation and disrupt the consensus. To do a Keanu and rearrange matter(s) that will deliver innovation which matters to patients and the public.

I was digging about in my garage the other day and found an old snow globe. I am afraid I have always found these ornaments – the mainstay of souvenir shops across the world – something of a disappointment. Give them a good shake and there’s a briefly pleasing fall of artificial snow before it all settles down to being the sugar-coated scene it was before. I mean, what’s the point in that?

Earlier this week I was reminded of my find by an email alert from the Health Service Journal. The HSJ – as it is more commonly known – is the journal that follows, investigates and reports the every move of the NHS. A little like one of those birds that ride on the back of an elephant. It is ever-present, pecking away. Some I am sure, see it as an irritant. Others observe that it keeps its host ‘clean.’

Anyway, HSJ was trumpeting one of its many ‘lists’ of the year. In this case the 2016 HSJ100 list of people with the greatest influence in the NHS (which actually comes out in October I believe). The accompanying editorial commentary heralded ‘huge shifts in power and influence’ across the NHS. On closer analysis I can’t say I came to the same conclusion. In fact the first word that came to mind was really quite unseasonal.

Power and influence might have shuffled around the NHS top table. It might have spread to local NHS dominions as the editorial says. But it has certainly not found its way into the hands of patients and carers. Now that really would be a power shift. Not a snow globe of one.

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[Even the poorest indicator that such a power shift was occurring – the number of ‘patient leaders,’ on the list (a term which has been purloined by the system as cover for who it chooses to – rather than who it should – work with) is this year notable for the scarcity and randomness of the names that appear. Though all of those who do get ranked are to be admired and respected.]

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Rest assured, my assertions have foundation. Some of it is personal. Some of it can only be summed up as ‘events I have chosen to take personally.’

First, the personal. Two weeks ago my father was finally discharged from hospital following his stroke in July. That’s a long-haul. It will be familiar to many families. That the last 6-7 weeks of our struggle – and there’s no other way to put it – amounted to how we could spring him from hospital in the manner of a fugitive will also be familiar to many. In spite of there being no clinical reason for him to be in hospital, we waited and waited and waited for social services to find the ‘capacity’ to care for him in the best place possible and of his own choosing – at home with my mum. Two months of draining, upsetting, costly (for all concerned) ‘imprisonment’ in his hospital room.

I knew we were in trouble when the first words the social worker spoke to me were not ‘how is your father doing’ but ‘how much money do they have?’ The opacity of the way social services communicated with us from that point onwards. The lack of timely and regularly information during this distressing period. A creeping, overwhelming sense of powerlessness that threatened to engulf us all. Not to mention the threatening comments made by another social work to my mum and dad one day when they were alone, implying they were to blame for the situation. Nothing quite prepares you for the staggering inhumanity of it all.

Any ounce of remaining empathy I may have had for the local authority and the underlying causes of its predicament dissipated from the day my father came home. For on each and every day following his return home – and on three occasions on one single day – its financial assessors phoned up to make an appointment so they could see how much my parents have at their disposal to pay for care. I don’t begrudge them the need to do this. I do begrudge the way in which money rather than a duty of care now clearly motivates – no, spurs! – the system into action.

The following conversation between me and one of the financial assessors sums up how little power has shifted to the patient
(or the lack of patient-centredness to use the term of the day).

Financial Assessor (FA): Hello Mr Denegri, I am phoning to set up an appointment for us to carry out a financial assessment of your father’s income and assets. This will be over the phone.
Me: Can you not come out to visit them? Both my parents are very hard of hearing and will find it difficult to do it over the phone.
FA: We don’t do appointment visits I am afraid. Only over the phone.
Me: Good job I’m around then. What if they didn’t have me? They’d really find it difficult over the phone. Can you send us the form in advance so we can look at it and be ready?
FA: There isn’t a form as such. What happens is we ask you some questions – should only take 20 minutes – and then we send you a completed assessment to for you check and sign to say it is accurate. I can send you a list of the things we need to find out about.

This was emailed to me later the day. It’s a list of all the sources of financial income/assets a person may or may not have and needs to declare. There is nothing to accompany it which says how the information is used, why and what might happens as a result.

Alternatively I could mention the mounds of unnecessary equipment sent home with my Dad. The vast majority of this already languishes unused in the garage or in boxes in his room. Some of this has been reclaimed but only because my mum arranged for it to be picked up. This is a system that is just not thinking. And when it is thinking, it is trying too hard at the wrong things.

If you detect anger in my prose then you would be right. Perhaps you might feel it inappropriate. But I can assure you – as many patient advocates will testify – any anger I have is nothing compared to the sheer frustration I feel about a system that leaves one feeling impotent, to blame, and trundles on regardless.

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Now for the matter you might think I have chosen to take personally.

The report and recommendations of the Accelerated Access Review (AAR) was published six weeks before Christmas. Chaired by Sir John Bell and Sir Hugh Taylor it sets out a series of measures that could – to paraphrase the newspaper headlines of the day – cut up to 4 years off the 15-20 years it takes to develop new treatments and innovations. If achieved that will be no mean feat. Millions of patients could benefit. The ball is in the Government’s court – it will respond formally in the New Year.

Good though this is. And it undeniably is. I am not sure the report’s claims of being patient-centred in how this will be achieved stand up to closer inspection. They might have done if the work of the patient theme of the two year inquiry – most importantly a set of statements shaped by patients and carers about what was important to them about innovation and research – had been published as part of the main report as had been signalled would happen in an interim report. But they were not. It was left to National Voices to salvage something by publishing them under separate cover on their website.

It all looks a little unchivalrous to dismiss the patient voice in this way. Hence the source of my anger. Call me old fashioned but the lack of courtesy, the condescension implicit in this sort of decision makes my blood boil. I am sure there’s a reasonable explanation. But the worry is that it says something deeper about the attitudes to the patient voice that run deep, very deep among senior decision-makers. The same might be said about Sustainability and Transformation Plans but I am no expert on that particular saga.

In the instance of the AAR, the proof will be in whether the patient voice is encapsulated in the way the report is implemented; the extent to which it is included on the AAR implementation group; the degree to which AHSNs and other organisations will be asked to hold a mirror up to themselves using the aforementioned statements over the coming months and years.

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So sadly – and in spite of some positive signs like the Patients First conference last month – one must conclude that just like that AAR report we do not start 2017 with patients and carers, their professional colleagues and policy-makers on the same page. Nor has there been a power shift across the wider health and social care system in favour of the patient and the carer.

The context for changing this does not look good. The months and years ahead are going to be extremely difficult. In science in particular. Partly because of the scale of the Brexit challenge and the defensive postures that are being taken in response. Partly because of the deep conservatism that has always driven the anti-EU viewpoint and is the prevailing force in the land at this moment in time.

Who can blame colleagues for thinking that falling back on old behaviours, or shrinking within the traditional boundaries of institutions and organisations, to protect ‘what’s left’ is the way forward. But it is not. And in public involvement it represents a very real danger; a threat to the steps we have made to democratise health decisions including those made in research. To the role that the public have in helping this country do ever more high quality research that focuses on patient needs and priorities.

2016 might have shaken us up in many ways. But the idea that things have dramatically improved for patients is a sugar-coated one, best consigned to a snow globe. In 2017 we must question and challenge the prevailing consensus like never before. Lives depend on it.

[apologies for such a long blog, you can blame it on five days in bed with flu]

Yesterday I was on a visit to the West Midlands.  The University of Birmingham, Birmingham Health Partners and West Midlands Genomic Medicine Centre (GMC) had invited me to talk about public involvement in research strategies for the region.

Many organisations and voices were represented in the room.  The discussion was lively and, at times, challenging.  But one particular colleague turned what was a valuable meeting, into an invaluable one for me.  Coming from outside the world of research and representing the world of public engagement in services and care provision she rightly asked (I paraphrase): ‘What is this?  Is this a parallel universe?  Why haven’t you been part of our discussion in service delivery over the last few years? Where have you been?’

These remarks should not be taken as an indictment of our colleagues in the West Midlands: I have heard it in many other places.  But it was a reminder, if ever we needed one, that often we need someone from outside our world,  to hold a mirror up to ourselves so that we can see who we really are.

On the train home I remembered another anecdote from a colleague some months back.  Again, it was in the context of a conversation about the need to bring researchers and care staff together more often to learn from and support one another.  She recounted to me that when she had tried to do this, the greatest reluctance was shown by her colleagues from the world of research.  Not those from service provision.  Research is research, and care is care, and ne’er the twain shall meet right?

Well, of course not.  But the point is that while we often talk a good game in public involvement in research about working with our colleagues in service delivery.  All with the aim of making research a bigger part of their thinking and vice versa.  We don’t follow it through. In fact, maybe we are just that little bit too comfortable in our ‘research’ silo.  And that might mean we are giving off the impression that we are too posh to get our hands dirty in the world of service provision?

This is not a new issue by any means.  I dug out the notes of a discussion on this topic from the INVOLVE Symposium in 2014.  Here they are, along with some of the suggestions for breaking down the boundaries (they can also be found on INVOLVE’s website here):

Discussion topic: What is INVOLVE’s role in bridging cultural barriers between involvement in research and service delivery? Issues raised:

  • Focus needs to be on how research contributes to service improvement. How do people involved in service delivery access research? How to interest them in research?
  • Challenge of different timescales in research and service improvement.
  • Realism about how much individual research projects and public involvement can deliver.
  • Researchers generally have bought into engagement not involvement. Conflation of the two.
  • Capacity issues in commissioning/service delivery. Practicalities more important barriers than cultural or language issues. New structures/plethora of guidance on PPI etc. PPI on the service side has fragmented as services have fragmented. There is no service side equivalent of INVOLVE. Trickle down from NHS Constitution to “shop floor” will take time.
  • Need to convince serviced providers that research will improve services, benefit patients and staff.
  • Lessons from research can be translated to service development.
  • Researchers not focused on dissemination. No money/status in implementation.
  • Lots of patient involvement in services we don’t see or understand.
  • How to ensure patients/patient groups have access to new research?
  • How to ensure patients/patient groups actively involved in service development can access learning and development opportunities available to those actively involved in research? Can we share what we have?
  • How do people currently use evidence of research outcomes to influence service provision?
  • Who has responsibility for ensuring research outcomes are shared with patients/the public, Clinical Commissioning Groups (CCGs)?

Discussions on what can INVOLVE do included:

  • Focus on how research can benefit health/how involvement in research can benefit.
  • Work with NHS England strategically – barriers are systemic not cultural divide. Opportunity to change this. INVOLVE can step in. Strategic link between those driving PPI in research and service delivery.
  • Simple local diagrams of new structures in service delivery and research, with simple explanation of organisational roles.
  • INVOLVE to facilitate strategic discussion across NIHR, NHS England, Health Education England.
  • Dual track – encourage linkage/mapping at both national and regional/local levels.
  • INVOLVE to signpost good local practice in joined up PPI working/shared learning.
  • Recognise key drivers on service side (key NHS Trust targets, etc)
  • Influence research commissioning to promote dissemination, engagement, implementation.
  • Engage third sector re research outcomes.
  • Look at effectiveness of dissemination/impact strategies.
  • Build on plain English work to help describe research as relevant, getting research into patients’ hands, demystifying research.
  • Advocate for participatory research.
  • Advocate for using existing research not just doing new research.
  • Raise research mindedness in service PPI.
  • How could INVOLVE help AHSNs and CLAHRCs do all this?
  • Look beyond healthcare involvement to learn how others involve/engage the public?

The discussion focussed on work that INVOLVE could do.  But, frankly, many of the things on the list should not be reliant on INVOLVE.  Nor can we use the fabulous work of our CLAHRC (Collaborations for Leadership in Applied Health Research and Care) organisations in trying to overcome these barriers as an excuse for doing nothing ourselves.  The onus is on us all to try and change the culture.

I know it goes both ways.  But perhaps our first move should be to open the door to our colleagues in service delivery.  And if they don’t come to us, we should go to them.

Patients, carers and the public would expect it of us I think.

As a democrat it doesn’t sit well with me that the new interim Major of Greater Manchester is unelected. The excuses for it seem pretty poor. You should start as you mean to go on.

Perhaps we should have sensed something was up when ‘DevoManc’ emerged as the nickname for the entity that will be responsible for the devolved health and social care budget. Is that ‘diva’ or ‘devo’ because there seems a lot of ego on show with this one. Not a lot of power going to the people.

I will gladly put money on the thing failing because of coruscating town hall bureaucracy and inertia not least around public engagement. Perhaps ‘DevilManc’ is a better option because the devil will be in the detail. Believe it or not I sincerely hope it works and I get egg on my face.

And what of this thing called the Northern Powerhouse. Does it refer to everything north of Watford and south of Hadrian’s Wall? Is it just about Manchester? Or are those great northern cities of Leeds, Sheffield, Newcastle and many others included? As they should be. No one seems to know. Whatever! Again, it sounds like the name of a good nightclub not a serious bit of regional policy.

Fact is that successive Governments have been piss-poor when it comes to handing power to the regions – or more correctly – the citizens who live in our regions. In the meantime, wealth has continued to trickle down to London and the home counties like the snow in a snowstorm toy. Doesn’t matter how the UK has been shaken up, it always happens?

So no wonder the devolved nations – Scotland, Wales and Northern Ireland – have become more restless and assertive. Same with places like Greater Manchester. Other English regions will follow suit. It will be an undercurrent of the new parliament, that’s for sure. It will be something that politicians will need to embrace without unlocking the darker forces of provincialism.

How this issue impacts on research and innovation and the public’s role in this is going to be fascinating. Last week saw the first conference I know of, that looked at the implications of ‘DevoManc’ for research. It concluded, I hear, with a vigorous session on public involvement. Good work my trust Mancunians.

Wales recently rebranded research there as Health and Care Research Wales. New research centres and units have been announced. They have also established HealthWise Wales with the aim of getting all its citizens taking part in research. I tweeted that it feels like a ‘coming of age’ for research there.

Looking at England, I feel more confident about what will happen where we already have strong, regional forums for the patient voice.

Fortunately the North West is one of those. It has the excellent North West People in Research Forum (NWPiRF) which held a strategy session just a few days ago: https://storify.com/nwpirf/a-trip-in-the-tardis-north-west-people-in-research.

The West of England People in Health forum where I spoke last week is another. The East and West Midlands have emerging ones too. The North East has its Voice North forum for older people. All of them share similar characteristics: strong leadership, a collaborative ethos, and the spirit of creativity. Perhaps add to that a desire to integrate with health system in their area.

What of the others? London for instance, which is often hide-bound by the institutional dominance on the landscape of Imperial and UCL? Or the southern counties?

Going the Extra Mile’ published the day the General Election was called, – and about to be reprinted in a more accessible format – recommended that there should be a patient voice forum in each region.

And I would go one step further. I would argue that the health research organisations in each of these areas should be putting a portion of their public involvement budget – AHSNs, CLAHRCs, LCRNs – into a central pot to run them. Perhaps 5% or £10,000 whichever is the greatest or the equivalent ‘in kind.’

If research is to face the same forces of devolution as others sectors then strong public involvement and engagement is going to be essential. We are not going to achieve this if the limit of our ambitions are our traditional organisational or institutional boundaries.

Simon Denegri
Chair, INVOLVE
NIHR National Director for Public Participation and Engagement in Research
Twitter: @SDenegri
Please visit my blog at;
https://simondenegri.com/

Simon DenegriChair, INVOLVE
NIHR National Director for Public Participation and Engagement in Research
Twitter: @SDenegri
Please visit my blog at;
http://simondenegri.com/

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).

Yesterday INVOLVE hosted a meeting of about 100 public involvement leads from across the National Institute for Health Research (NIHR). There are probably nearer 200 in total across the NIHR family.

This was the first time that we have ever been able to bring together people in this way. A powerful milestone.

This link will take you to a presentation myself and Rachel Matthews (CLAHRC NWL) did at the meeting. It gives an overview of the initial findings of the NIHR Strategic Review of Public Involvement ‘Breaking Boundaries:’ http://www.slideshare.net/SDenegri/presentation-to-national-institute-for-health-research-nihr-public-involvement-leads

They are very much initial, headlines as we are still sifting through the mass of views, opinions and evidence provided by people so very generously. We also had a Q&A session with members of the review panel with questions ranging across a wide range of issues – from funding to what’s happening in our networks.

Here are my opening remarks as well which I probably didn’t keep too! I’ve kept the slide numbers in there for reference…….

Good morning everyone.

This is an exciting day.

‘Coming together is a beginning, staying together is progress, and working together is success.’

Henry Ford

This is an important day.

Never before have we brought together public involvement leads from across the National Institute for Health Research (NIHR). In that sense, this is something of a milestone in the development, the maturing of, public involvement in health research.

So, a warm welcome to the Kings Fund and to this first INVOLVE/NIHR Public Involvement Leads meeting.

I would like to take a few minutes to preview some of the key themes for the day. The first one is leadership.

Over the last three years since becoming Chair of INVOLVE and National Director I have visited many of your organisations and institutions and I would like to thank you for your welcome and hospitality at each of these.

Now, in return, it feels important to acknowledge, celebrate and recognise you as leaders, the leadership role you play in bringing people together to make public involvement happen. That role can be exhilarating and satisfying but also isolating, difficult and challenging.

So we are going to spend a great deal of today enabling you to network, think about ways of collaborating with others, and enable us to discuss openly what shared learning and support looks like for you.

One of the reasons why I was very keen to bring us together as a community is a concern that colleagues fulfilling public involvement roles in organisations may not always have the structures and support to fall back on that other colleagues do, that we need to help support your development needs as colleagues. I hope this represents a start.

But we must also knuckle down and begin to tackle issues around cohesion, consistency and continuity in what we do across NIHR. From the language we use to how we support patients and carers appropriately to be part of research.

What does ‘One NIHR’ look like from a PPI perspective?

This is one way of looking at it – you all gathered together in this room. Over 100 of you. But there are in fact 180 people across NIHR and AHSNs who have a public involvement role who could have been with us today and that’s not including colleagues in CTUs, NHS, Universities etc.

But we also have to think about what ‘One NIHR’ looks like from outside, and most importantly from a patient and carer perspective.

Thinking about that first quote I shared with you from Henry Ford and what he did to introduce the first mass produced car, a key challenge for us is how we spread and embed public involvement?

How do we enable anyone to join us and make the contribution to research that they feel most comfortable with? How do we make it easy to drive from a patient and carer perspective, and enable them to drive to where they want to get to?

[final slide]

I hope that you will leave today, enthused and excited about your role, and what we can do together to create and lead the future in public involvement with our patient and carer colleagues.

Simon Stevens, the relatively new NHS Chief Executive, put innovation front-of-house in his speech to the NHS Confederation yesterday.  He identified it as one of three elements crucial to ‘future-proofing’ the NHS for the challenges ahead.  You can read the full speech here.  But I have also included the relevant extract below as it is worth reading.

A few points and observations of my own:

The competition announced for leading teaching hospitals and clinical research centres to join the Genomics England programme is a canny move that will help build capacity and capability quickly while also assisting with implementation in clinical practice.  It fits with the spoken model of Genomics England as being a reading library rather than a lending library. It also opens up the possibility of better engagement and involvement of patients in personalised medicine.  The TSB funded public dialogue exercise will report its results shortly but it was interesting to speak to a cancer researcher a few days ago and hear how the sort of precision diagnosis now possible with some cancers can amount to overwhelming detail for a patient and their family.

It is easy to read too much into speeches but I did take the ‘if we get our act together’ passage as a call to arms to all parts of the health research and innovation system to work together better.  I also felt that implicit in this was a vote of confidence in, if not  a nudge that long-term support will be available to, AHSNs (Academic Health Science Networks) as the organisations to make things happen.  Whereas the previous regime was far too political in seeing AHSNs as a land-grabbing opportunity, this one seems to see them as instruments of innovation.

There are no surprises that care.data is in amongst the mix.  It should be.  Stevens nearly gets it right in his messaging.  But we could all be more plain-speaking.  It is about using data to make people better.  Hence the tragedy if we can not realise its potential because ultimately we failed to build a robust system that wins public confidence. If you talk to colleagues in the cancer world you will soon hear how the pause in care.data is having knock-on effects for cancer registries and others in how they can use data for research.

Finally, I think it is very, very interesting indeed – if not downright refreshing – that citizens, patients, the public are being mentioned in the same breath as innovation.  In fact being viewed by the NHS’ CEO as key innovators in the system.  I particularly liked his closing sentence to this part: ‘Above all it’s why we should recognise that achieving change in the NHS is not merely a techno-rationalist activity, it’s health as a social movement, working with communities and civil society organisations and local government and faith groups and patients groups and many others.’  It strongly echoes the philosophy behind the NIHR strategic plan: ‘Promoting a research active nation.’

Some will no doubt object to us being seen as ‘renewable energy’.  But it’s better than being fracked to death as before.

Above all, I hope the emphasis on research and innovation in Simon Stevens’ speech will result in greater momentum in NHS England with regards to its research strategy which is into its second draft and badly needed.

Extract from Simon Stevens speech to NHS Confederation, 4th June 2014.

3. Harnessing the coming innovations in modern medicine.

When you’re in the heat of the here and now it’s sometimes hard to stand back and see some of the bigger changes unfolding, some of the wider opportunities ahead. But now is the time to do that.

I say that in part because I believe that all industrialised countries stand on the cusp of at least three quite fundamental shifts in the practice of modern medicine. Will we in the NHS embrace them and harness them to our cause – or will we wait for them to wash over us, while trying to muddle through? That’s our choice.

First, personalisation. A decade and a half on from the Human Genome Project, we’re still in the early days of the clinical payoff. But as biology becomes an information science, we’re going to see the wholesale reclassification of disease aetiologies. As we’re discovering with cancer, what we once thought of as a single condition may be dozens of distinct conditions. So common diseases may in fact be extended families of quite rare diseases. That’ll require much greater stratification in individualised diagnosis and treatment. From carpet-bombing to precision targeting. From one-size-fits many, to one-size-fits-one.

The NHS should be at the forefront of this global medical revolution. That’s one reason why I’m announcing today that NHS England will be launching a  competitive process for the nation’s leading teaching hospitals and clinical research centres to join the UK’s new 100,000 genome programme – one of the world’s highest profile initiatives in this area. We expect to issue the ITT at the end of this month, followed by two bidders’ days and final submissions in July, and the announcement in the autumn of the successful wave one trusts who will begin sample acquisition in early 2015. In parallel we will be consulting on moving to a new model for regional genetics labs to upgrade and industrialise NHS capabilities in this area.

We’re never going to be the country that pays the highest prices, or that adopts new treatments regardless of how well they work – just so we can say we’re ‘innovative’. We’ll happily leave that accolade to others. But what we should be is rigorously pro-science, pro-research, and pro-the rapid spread of useful improvement. That’s where AHSCs and AHSNs have such an important role. If we get our act together, what the NHS potentially has to offer – that many other health systems don’t – is a unique combination of biomedical research, population-orientated primary and specialist care serving diverse patient groups, longitudinal data (to allow matching of phenotypes wit genotypes), an aligned financing system, and a rigorous focus on value creation.

A second area where we’re going to see major opportunities is by using data to drive transparency, quality improvement and the move to more proactive and anticipatory care. For example, researchers have shown that real time analysis of clinical data from electronic health records could have identified increased risk of heart attacks associated with one diabetes drug at least five and half years earlier than actually happened. Similarly while cancer outcomes have been improving dramatically – Cancer Research UK point out that half of all cancer patients now survive at least 10 years, compared to only a quarter in the 1970s – we also know that perhaps a quarter of cancer patients are only diagnosed when they arrive in A&E, and that as result their prognoses are substantially worse. So proper data linkage between GP systems and hospitals and other health care providers to create secure, confidential longitudinal information that allows us to target prevention and quality improvement, as well as help discover new treatments and cures, is essential if the NHS is to deliver for the people of England. That’s why getting programmes such as care.data right is so fundamentally important.

Third, we stand on the cusp of a revolution in the role that patients – and also  communities – will play in their own health and care. Harnessing what I’ve called this renewable energy is potentially the make-it or break-it difference between the NHS being sustainable – or not. That’s why NHS England has, for example, just launched an initiative to support 150,000 people with so-called patient activation tools. It’s why we’re backing the new NHS Citizens Assembly. It’s why a number of patient groups are arguing for personal health budgets that put service users in control. It’s why we should be doing more to support the 1.4 million full time unpaid carers across the country. It’s why the £500 million-worth of volunteer support for the NHS (which I suspect is an underestimate) should be nourished and stimulated. Above all it’s why we should recognise that achieving change in the NHS is not merely a techno-rationalist activity, it’s health as a social movement, working with communities and civil society organisations and local government and faith groups and patients groups and many others.

So – a coming revolution in biomedicine, in data for quality and proactive care, and in the role that patients play in controlling their own health and care. The NHS has to grab these opportunities with both hands, rather than just letting them wash over us, or hoping they’ll bypass us so we can carry on with business as usual.

A glance at the events already confirmed in my diary for 2014 tells you everything you need to know about the priorities this year compared to last.

Events hosted by one or more of the Academic Health Science Networks (AHSNs), Collaborations for Leadership in Applied Health Care and Research (CLAHRCs) and new Local Clinical Research Networks (CLRNs), dominate. Regional and local patient group meetings feature large as well and are increasing in number all the time.

Localism is well and truly beating at the door of these organisations. Whereas before they (or their predecessors) were used to playing to national agendas and seeking international reputations. Now they must demonstrate that they are also serving local needs and local partners. It might well have been in their brief before.  But it was conveniently forgotten or, at best, poorly demonstrated.

Are they ready to listen to the voices of local people? I fear not.

Do they all have the aptitude and skills to do so? Not on your life.

Inevitably they will be tempted to look for surrogates – whether providers or commissioners – to give them the aura of being locally rooted.  Just as these surrogates will lean heavily on the research infrastructure so that they can demonstrate that they are meeting their duties to promote and advance research.

AHSNs, CLAHRCs and CLRNs, are about to ‘enjoy’ forced cohabitation in defined geographies with these bedfellows. For some that will feel like going on a camping holiday with once distant acquaintances to find there is only one tent.

If 2013 was about NIHR finishing the job of renewing and building its infrastructure then, now, it’s about making sure all the bits fit together as one, that the desired convergence with the NHS does not end up looking like Jackson Pollock’s picture of the same name.  Collaboration must be the priority. Some will fall out of the tent. Others will make it work. The better ones will break the rules and realise there is nothing stopping them from staying in a B&B.

At the moment I see too many separate interests jockeying for position; dialogue but no common purpose or agreement on the bottom line. This has be expressed in terms of what it means for the local population as much as it speaks to any national imperatives or international agendas.  For with local identity comes local responsibility as well.

For patients and the public the best thing you can do is be visible and make our agenda unmissable as the above plays out. Do not wait for it to settle, for then the deal will have been done.

Make new contacts or strengthen existing ones with patient and public colleagues. There is much truth in the saying ‘strength in numbers.’ And our numbers are growing every day. Pick up the phone, send an email. Make the connections.  It is these that will help UK health research find their local feet.

My best wishes for 2014.

Goodness knows what made me start to do this.  Perhaps it’s the ‘public servant’ in me.  Hey ho!

Here’s a list of the Academic Health Science Networks (AHSNs), websites (click on the relevant AHSN name), their MDs, Chairs, and Twitter addresses.

An interactive map of the AHSNs areas can be found on the Yorkshire and Humber AHSN site here.   But just so you know the areas look like this:

ahsns

East Midlands, Rachel Munton (Managing Director), Martin Hindle (Chair), Peter Bates (PPI lead) @EM_AHSN

Eastern, Dr Robert Winter (Managing Director), Professor Sir Michael Rawlins (Chair), @TheEAHSN

Imperial College, Adrian Bull (Managing Director),@Ldn_ICHP

Greater Manchester, Raj Jain (Managing Director), @GM AHSN

Kent Surrey Sussex, Guy Boersma (Managing Director), David Clayton-Smith (Chair), @KSS_AHSN

North East and North Cumbria, Dr Seamus O’Neil (Managing Director), Dr Arnab Basu (Chair) @AHSN_NENC

North West Coast, Liz Mear (Managing Director),

Oxford, Gary Ford (Managing Director), Nigel Keen (Chair), @OxfordASHN

South London, Chris Streather (Managing Director) Richard Barker (Chair), @SLondon_AHSN

South West Peninsular, Rennie Leach (Managing Director), Dr Andrew Vallance-Owen(Chair),

UCL Partners, David Fish (Managing Director), Sir Cyril Chantler (Chair), @UCLPartners

Wessex, Martin Stephens (Managing Director), Fiona Driscoll (Chair), @WessexAHSN

West Midlands, Kate Hall (Managing Director), Professor Michael Shephard (Chair), @wmahsn

West of England, Deborah Evans (Managing Director), Steve West (Chair), @Weahsn

Yorkshire & Humber, Andrew Riley (Managing Director), Sir Andrew Cash (Chair), AHSN_YandH

Some of this information can also be found on the NHS England website. In fact, through that you can also find a very interesting ‘matrix’ showing the priorities of each AHSN.  East of England and South London have listed public involvement as cross-cutting themes.  I also know that some such as West of England have got a robust approach to it.

But now you have the twitter addresses for each you know what I would do if I was you?  I would drop my respective AHSN a twitter Xmas card asking them how that public involvement plan is going.  After all, patients are for life not jus for Christmas.

Glad to be of service and very happy to correct any mistakes.

1. ‘The dog ate my whole doctor’s surgery.’ Yep, it’s those dastardly GPs again. Ever since the weekend news that many cancers are first diagnosed in A&E we’ve seen the excuses just roll off their collective tongues. So much so you’d think they’d said them before. We’re underfunded, underpaid. stunned by so much change, and very, very, very, very busy. Expect more of the same in response to the Care Quality Commission report this evening. Most definitely DOWN.

2. ‘The NHS is listing.’ So the HSJ published its annual top 100 superheroes in healthcare list today. All puerile nonsense really. The HSJ even hosts a party for them all. Given that the first individual with patient credentials appears at #37 on this year’s list, I suspect the only patients and members of the public at the party will be serving canapés. And we wonder what’s wrong with the NHS. DOWN.

3. ‘Research is the new dating.’ The Health Research Authority (HRA) has announced a consultation on good practice in approaching people to take part in research. Good move I say. Too many ethics committees would rather we recruit people to research using methods similar to MI6 at Oxford or Cambridge in the 50s. More on this later but they are most definitely UP UP UP!

4. ‘Cut-price PPI.’ With the January sales just a few weeks away it’s heartening to hear that the National Cancer Research Institute (NCRI) is keen to make an impression. But cutting the reimbursement of patient and public involvement colleagues from £150 a day to £80 overnight and without consultation is just a little bit crass. Remind me, what does the campaign slogan say: ‘no research happens without participation.’ NCRI is DOWN in my book. Sorry.

5. ‘Results? Don’t worry your little head about that!’ So we learnt this week that 4 out of 5 participants in research would like to be informed about the results of studies they have taken part in. But only 1 in 5 get them. Shame. Research is for life not just for Christmas. But why not take the opportunity of the festive season to sign-up to #AllTrials who are definitely UP.

6. ‘Exeter is the new Bonsai beach of PPI.’ Congrats to PenCLAHRC on what I heard was a fantastic PPI conference a few weeks ago. I say ‘heard’ because I wasn’t invited. Not that I bear a grudge or anything. Now, where’s NIHR’s number…..? UP, I say, UP

7. ‘Researchers like their toys.’ How dare we question the basis and funding for the 6,234th study into whether music and singing in a care home leads to happier residents? Of course it bloody does! Similarly I have yet to fully understand why the ESRC thinks it is a good use of public money to spend £425k to study how children play with Action Man. They could just have called on my house and spent Sunday afternoon with my sons – for the price of a cucumber sandwich or two! The ESRC is DOWN.

8. ‘Dementia wasn’t cured in a summit.’ Let me be clear, the G8 Dementia Summit today is a good thing in my view. But whether we’ve seen Jeremy Hunt march us all up the mountain and then back down again like the Grand Old Duke of York remains to be seen. In the meantime put your trust in the ‘10,000’ and many more people with dementia and their carers who will get us there through their involvement. For that reason, and that reason alone, UP!

9. ‘Think AHSN, think Secret Santa.’ If you had been at the AMRC AGM two weeks ago you’d have thought Christmas had come early in research with the advent of AHSNs. They are going to solve all our problems.

Up and down the country the same encounter is taking place in dark alleys between researchers and policymakers: ‘My mate Nicholson tells me (sniff) you’ve got a problem with your test tubes and stuff. Well, I know just the bloke to help you, works for one of ’em AHSNs. Goes by the name of…’

But let’s get real. With less money and little consistency in approach, working with AHSNs is going to be more like the office secret Santa.  What that means, my hardy patient and public colleagues, is that your particular Secret Santa may have forgotten all about you I am afraid. So, AHSNs are neither UP or DOWN my Christmas chimney. The jury is most surely out.

10. ‘You know who you are.’ The term ‘patient leader’ is being purloined and skewered left right and centre.   Beware management consultants and so-called ‘public engagement experts’ on the make especially. Patient leaders, rise above it I say! We’ve seen it all before. We are all on the UP.

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?

Fantastic to see so many people gathered in the room and in hyperspace for the launch of the Public Involvement Impact Assessment Framework (PiiAF).  You can view the prototype website here. A really important piece of work and here are my remarks from the start of the day without the jokes.

Launch of the Public Involvement Impact Assessment Framework #PiiAF – Friends Meeting House, London, Friday 6th September 2013

Thank you to Jennie Poppay (@Popay100) and her team for asking me to say a few words to open today’s event and put the Public Involvement Impact Assessment Framework (PiiAF) in context.  10/10 also for thinking of such a memorable title for it by the way y- ou’ll go far in marketing.

And I really am going to say a few words only because, like you, I am eager to learn more about the main act.

Impact reporting

Earlier this week I was helping to write the first draft of NIHR’s annual report for 2012/13.  I’m pleased to say that its first chapter is titled ‘Patients and the Public’ and is all about the different ways the public are involved in what NIHR does.  Reading the rough cut, the first chapter comes across like a great story.  Or should I say stories because there are a number of stories about impact public involvement has had. And lots of facts and figures.  It’s compelling.  It’s exciting.  There’s a real sense of momentum.  As you read it you want to be part of it. 

I know some people are reticent about the agenda around impact; they have a sense that it’s controlling in some way.  But personally I think it’s quite the opposite.  Not being good at reporting impact is going to be our straightjacket as a movement.  Getting better at it is going to be liberating for us and others.

PiiAF

So congratulations to Jennie, the team and all those who helped on produce PiiAF.  Thanks also to the MRC Methodology Research Programme for their support for it.

As I was reviewing PiiAF last night I was struck by a couple of its main strengths. 

The first is the way it combines a framework with supporting guidance and access to further resources which will enable people to tailor it to their own needs.  This flexibility is going to be really important for patients and the public, researchers and others to self-direct such models according to their needs.

Everything we do must be rooted in and with the experiences of patients and the public on the ground.  I sometimes refer to this as earthing our work in the same way that we earth our electricity supply.  Enabling people to plug into such work and in the knowledge that it is well-earthed can give real energy to what they are doing.

The second is the importance given to values.  For some reason people seem to want to denigrate the role of values.  But the best organisations I have worked for are those that have had a real sense of their values.  And over the summer with the Francis report we have seen how positively dangerous to others when an organisation such as the NHS cuts itself adrift from a set of core values.

Space race or space station

I know that Jennie and her colleagues are keen for PiiAF to not just be used but to be built upon, to be strengthened and improved upon by others, that it be a spur to people to add to the evidence base around impact.

That has to be right. 

As some of you know I was on the panel for the awards of the second round of CLAHRCs announced by the Department of Health in the early summer.  Many things struck me about the applications we received.  Not least how many people said they were going to produce the definitive toolkit for measuring the impact of public involvement, the national evaluation framework for all to use.

Course I understand the desire.  I am as competitive as the next person.  But I think we have to remember we are not in the public involvement equivalent of the space race.  In fact isn’t the better way to be building on what each other is doing to create the public involvement equivalent of the space station where we are able to work and learn together, to take the long view of what colleagues are doing?

Strategic challenges

Impact and its reporting is just one of the strategic challenges we need to make headway with, and with some urgency if public involvement is going to be positioned well for the future.

And it’s important in my opinion that we keep the momentum and visibility up that I hope people felt was there going into the summer. From INVOLVE’s work on learning and development to ‘Ok to Ask’ to our new tool for helping people to cost public involvement.  A combination of considered strategy and real, practical tools.  The fact that 40,000 people visit INVOLVE’s website every month indicates the need but also, I hope, that we are all doing something right.

Anticipating what next is going to be the key:

         Growing the community and its influence throughout the system.

         Clarity about the public’s role in improving the nation’s health and wealth as part of NIHR’s growth agenda.

         Funding and resources

         Supporting public involvement colleagues across the new local networks, CLAHRCs, Academic Health Science Networks (AHSNs) to work together.

         Turning NHS research and its design into real opportunities for the public and patients.

         Thinking through future options for how we strengthen the model of public involvement and our approach within NIHR, and how we determine these.

It is going to be a busy autumn and thanks to Jennie and the PiiAF team for getting us off to the right start.

 

 

 

 

 

A little while ago I stumbled across a survey which said that 70% of the leaders of FTSE 100 companies had an accountancy background. In other words they were not necessarily bloodied in, or married to, their organisations core business. It makes perfect sense when you think about it. Their number one priority is to deliver the right numbers for shareholders and the stock market.

It got me thinking anyway. Could a non-scientist lead the Medical Research Council (MRC), the National Institute for Health Research (NIHR), or even one of our esteemed Academies one day? And, if not, why not? After all, the No1 priority of all these organisations is public benefit. So why not have a member of the public as leader?

A casual observer might also be forgiven for concluding that when science organisations have stumbled into problems the issue has often not been a lack of science expertise. The real issue has been a lack of leadership skills: financial acumen; the ability to build relationships and; poor communications. A lack of recognition that these positions are more and more ‘political.’ Perhaps that is the tale of the unfortunate recent history of the Royal Institution for instance, I don’t know?

Closer to home it is worthwhile reflecting that there continues to be a proverbial ‘glass ceiling’ which is preventing patients and the public from being co-applicants, reaching the boardrooms, or leading health research organisations.

In fact my impression from reviewing many research applications now is that our governance model for public involvement has got stuck on creating PPI ‘advisory’ or ‘steering groups’ like a needle on vinyl. Off-centre in terms of how the organisation is run they are in what scientists might call a controlled environment. I think we all know what that means from a public and patient perspective!

Yesterday I spoke at two events hosted by the West Midlands CLRN and Northwest London CLAHRC respectively. There was no shortage of ‘lay leaders’ in those rooms. In fact, in the case of the former the Director, Andrew Worrell, has no science background at all. But he was voted in unanimously by both his public and science colleagues. He remains the exception to the rule I am afraid.

Perhaps as our Academic Health Science Networks (AHSNs), CLAHRCs and Clinical Research Networks go through their various changes in the next year or so, we should be setting an expectation that they have a plan for public involvement in their governance.

As for the Royal Society, MRC and others I suspect we will still be waiting in another 100 years. That might be the right decision. But it would be a shame if they had not at least asked ‘what if..’ and considered the benefits as well as the downside.

Asking ‘What if’ is not a bad way to begin shedding the cobwebs in any organisation.

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.