Welcome

Thanks for visiting my blog. I am Chair of INVOLVE - the UK's national advisory group on public involvement - and NIHR National Director for Public Participation and Engagement in Research. I was CEO at the Association of Medical Research Charities (AMRC) from 2006 until 2011. My full profile can be found on the 'Biography' page. The views on here are all personal ones unless otherwise stated. I hope you enjoy some of the things I write and/or find a useful link or two along the way.

Lit runways and other language pitfalls – or should we say ‘crash landings’ – in science.

I went to a listening event hosted by the new Life Sciences Minister, George Freeman, yesterday. It was rather good. One of the better ones I have attended over the years. So well done him. And well done those who ran it.

During the course of the event, I came across a new term – ‘lit runways.’ Well, new to me. It was being used in the context of trying to speed up access to medicines for patients by shortening the development time. The idea being that if you can see the runway lights you can land safely and soundly without delay.

Now I’m not one to knock a good metaphor. After all I seem to remember once being lambasted by a Daily Telegraph reader for the number of metaphors I used in a letter to which he was responding in print.

And all Governments have new ways they wish to articulate their policy ideas. David Willetts had ‘clusters’ for breakfast. I seem to remember Lord Drayson ‘catapulting’ faster than one of his racing cars.

But yesterday afternoon I did begin to wonder.

For as soon as I heard the words ‘lit runway’ I recalled a story in which an airline pilot was severely reprimanded by his airline (he may, in fact, have been sacked) for mistaking the M4 as Runway 27R at London Heathrow Airport.

Luckily he realised the error of his ways before his wheels struck the roof of the Queen’s car taking her back to Windsor (I made that bit up). Perhaps he knew something we don’t about runway expansion in the South East of England.

The point is that it’s all very well landing on a lit runway…as long as it’s the right runway.

So, listening to the absorbing debate among colleagues I was encouraged by the number of times people talked about ‘empowered’ patients being fundamental to the future success of UK research and success.

I couldn’t have put it better. But if they really mean it then it means accepting that patients and the public must be part of the construction crew that builds the runway.

If not, we will simply building runways to destinations not of patients’ choosing. And no one wants to land there.

Night night.

A research active NHS is Impt to patients, NIHR survey shows. Minister for Life Sciences quoted

The following is the news release put out today by the National Institute for Health Research (NIHR) Clinical Research Network with new survey data about public opinion on clinical research and the role of the NHS.

Starts here:

A new survey conducted on behalf of the National Institute for Health Research Clinical Research Network (NIHR CRN) shows that 89% of people would be willing to take part in clinical research if they were diagnosed with a medical condition or disease – with an all-time-low figure of just 3% saying they would not consider it at all.

The survey also revealed that 95% of people said it was important to them that the NHS carries out clinical research.Last year over 600,000 people took part in research which aims to improve diagnosis, treatment and care of patients in the NHS. The growing importance of clinical research to the general public and their increased willingness to take part suggests that this number is set to rise.

Commenting on the findings of the survey, the NIHR Clinical Research Network’s chief executive, Jonathan Sheffield, said:

“It is important that we make information about clinical research opportunities widely available to NHS patients, through as many routes as we can. This survey shows that people want to participate and we need to ensure they are made aware of the research opportunities available to them. Through our local Clinical Research Networks, we will continue to actively work withal parts of the NHS to promote research opportunities for patients.

“The survey also shows that although 77% of people are awarethat clinical research happens in hospitals, they are less informed about opportunities to take part at their local GPs – even though our data shows that one in three GP practices is research active.

“Clinical research happens in the majority of healthcare settings from hospitals to Ambulance Trusts and from Mental Health Trusts to Community Hospitals. I would urge people interested in research to examine all opportunities as anywhere there’s an NHS patient, there should be an opportunity to get involved in research. Part of our role is guiding healthcare professionals to ensure that they are promoting research and we have produced materials to help them do that.”

When asked about motivating factors for taking part in clinical research, nearly half of the people surveyed said that receiving a diagnosis for a medical condition or disease would be a factor most likely to motivate them. One in five said that they would be motivated if a friend or family member was seriously ill and an appropriate treatment had not yet been developed. On this Jonathan Sheffield said:

“It is important to know that many research studies also involve healthy volunteers. We see a lot of carers, friends and family members of patients who are diagnosed with a condition or disease come forward to take part in research. It can be reassuring for them to be able to contribute something which could help a loved one.Research gives people the opportunity to affect future care, whether they are affected themselves or not and patients can find that very empowering.”

Simon Denegri, NIHR National Director for Patients and the public and Chair, INVOLVE said:

“Patients, carers and their families want to see their local NHS carrying out research to improve care and they want to help to make this happen. That is clear from this survey as well as the hundreds of thousands of people who volunteer every year to take part in clinical research.

“Our hospitals and GP surgeries need to be makinginformation readily available to patients so that they know it’s ‘OK to ask’ about research. The research we do with patients today is the quality care that our NHS will deliver tomorrow.”

Minister for Life Sciences George Freeman said:

“The NHS provides a unique setting for the development of new treatments that can bring real benefits to patients. We have world class research facilities and it is clear that patients want the opportunity to take part in clinical trials. Ensuring that the NHS continues to embrace research will help us realise our ambition of making the NHS is the best health service in the world."

Patients interested in research can visit: http://www.crn.nihr.ac.uk to find out more about taking part and see what research is happening in their local area.

- Ends -

NOTES TO EDITORS:

About the NIHR Clinical Research Network

The NIHR Clinical Research Network is part of the National Institute for Health Research. We provide researchers with the practical support they need to make clinical studies happen in the NHS, so that more research takes place across England, and more patients can take part. This practical support includes:

• reducing the “red-tape” around setting up a study
• enhancing NHS resources, by funding the people and facilities needed to carry out research “on the ground”
• helping researchers to identify suitable NHS sites, and recruit patients to take part in research studies
• and advising researchers on how to make their study “work” in the NHS environment.


Patient case study

Lucy Norman was diagnosed with Parkinson’s aged 38 when she began to struggle with her job as a former NHS PA in London. After taking part in research Lucy’s quality of life has greatly improved. Lucy now volunteers with charity Parkinson’s UK and is involved in village life, from being co-chairwoman of the village hall management committee to helping run the monthly market.

Angus, Lucy’s husband, aged 64, also took part in the five-year study alongside his wife Lucy as a healthy volunteer, at Oxford’s John Radcliffe Hospital. The study is looking at a test to speed up early diagnosis for Parkinson’s sufferers.

Angus said:

“Taking part in the study was so beneficial because it was something that I could do personally to help Lucy,because sometimes you can feel helpless in situations like that. The opportunity to take part and give something back really illuminated the whole concept of clinical research for me.

“I understand how important and valuable it is now. And it wasn’t hard at all; I simply took the same tests that Lucy did. It’s something we can do together for Parkinson’ssufferers. It may seem like a small contribution in the world of clinical research, but personally, it’s a big contribution for me, to help my wife and others like her with medical conditions – and that’s a fantastic achievement.”

Associated links

http://www.crn.nihr.ac.uk – Website for the Clinical Research Network (CRN)
http://www.crn.nihr.ac.uk/can-help/patients-carers-public/ – The CRN’s general patient and public information pages
http://www.nihr.ac.uk/get-involved/ok-to-ask.htm – About the NIHR’s OK to ask campaign
http://www.crn.nihr.ac.uk/patientstories – About the CRN’s Patient stories campaign

Contacts

For interviews, images and more information:

Part II of ‘How to be a lay reviewer of health research:’ Being on a scientific review panel

Last week I posted my top ten tips for patients and the public (‘lay reviewers’) who have been asked to review applications for health research funding.

Today I thought I would share my thoughts on what to expect when asked to be on a review panel; how to best contribute to the panel’s work in general and; what to consider when raising issues around public involvement in such a setting.

Funders establish review panels or committees to help them reach a decision about what research to fund. The panel can be asked to look at anything from projects lasting a few years and amounting to a few tens of thousands of £s, to larger programmes running over 5 years or more. Or to approve what is often called infrastructure (a
collaboration, new venture or perhaps organisation) amounting to many £millions. Some are ‘standing’ committees that run for years. Others are convened for a particular grant round or task.

The important point about review panels is that they are there to reach an independent viewpoint on whether an application is worth funding. These recommendations are then made to the funder who takes the final decision (perhaps it’s Board or a committee with delegated authority to do this).

As a lay member you have been asked by the funder to work with the other experts around the table to reach a consensus on whether the application should be funded. Likely considerations in reaching this view include whether it is a good idea, based on sound science, fits with the criteria set down by the funder, will be well run and led, involves the public and represents a good investment.

Probably the one thing that will strike you if you ever sit on such a panel is the amount of effort put into making these things work fairly, transparently and efficiently.

There can be as many as 30 people on larger panels but around 10-12 is more typical. As well as assembled experts like yourself there will likely be a number of representatives from the funder present. They are sometimes known collectively as the ‘Secretariat’ and have a number of roles. They are there to make sure an accurate note is taken of the decisions taken and the reasons behind them (people do challenge them!). And to advise the panel Chair and its members on things like funding criteria.

There’s also usually a lot of paper! However, it does seem that more and more people come to the meetings and work off their computer or laptop. You might wish to do so if you have one and feel comfortable working like this. Some people continue to prefer paper.

Anyway, here are my top tips this time:

1. ‘Preparation is all you need.’ Yes, as ever, the key to feeling confident as a lay reviewer on a panel lies in good preparation. Sounds obvious but when it goes wrong for me it’s often because I have short-changed myself on prep time. Leaving enough time to read the documents, get to the venue and sort out your papers on arrival, is very important.

Otherwise you will appear at the meeting – late! – like a living approximation of Boris Johnson’s hair after he has woken up: endearing perhaps, but lacking in gravitas most certainly. And you want to be taken seriously. Sorry, but first impressions do matter.

However, your preparation really begins from the moment you become a member of the panel. So, before agreeing to be on it, clarify how you are going to be supported. Can you get hard copies of the papers if you want? Can they arrange travel and accommodation if necessary? Will there be any training or induction provided? Will they be using accessible venues and review formats?

2. ‘Knowing me, knowing you.’ It is worth taking some time to get to know the members of the Secretariat – particularly the panel administrator or secretary – and, if possible, the Chair, before the meeting.

A good funder should make time for this to happen in advance of the first meeting. If not in-person then by phone. It’s the opportunity for you to ask questions about the process, how they run things and clarify practical arrangements.

Getting to know the Chair will also give you an idea of the
‘personality of the panel.’ His or her style of Chairing will have a strong bearing on whether the panel feels formal, informal or simply chaotic.

If a pre-meet or similar does not happen, you should take the initiative on arrival and introduce yourself. And ask to meet with them some time in the future if you will be on the panel for some years. It’s important to have a good relationship with those running the shop. Don’t forget they need you as much as you need them – it really is an enormous headache for administrators to find panel members and they won’t want to lose you.

One last point on this is that I would expect a good Chair to always give the lay member(s) an opportunity to say something if they want to (see below for further guidance!) as each application is looked at.

3. It’s ok not knowing everything.’
No one else on the panel knows everything (although they might like you to think that they do) so why should you? Ask questions where you think it might be important to clarify something. In fact asking questions is one of the most valuable things any reviewer can do. I have seen the most innocent of questions completely blow open an application. What do they say: ‘The only stupid question is the one you don’t ask.’ However…..

4. ‘Less is more.’ I think this is where people generally go wrong in all sorts of meetings, not just review panels. They don’t just take the floor, they hog it. Until we are all so bored and frustrated that it can infect the whole proceedings.

It’s important to bear in mind that the panel may be looking at 10-15 applications in a day with 15/20 minutes to look at each. So, have your main points ready to share. Two, perhaps three at most. But maybe it’s really not worth mentioning the spelling mistake or poor grammar. You must focus on those things that you think either make the research excellent or unviable from a public involvement standpoint.

5. You don’t have to find something to say about every application.

6. ‘It’s not just about public involvement.’
Often when reviewing you are asked to focus on public involvement in particular or even score only that part of the application. I don’t have a big problem with that. But you have every right to comment on things outside of this. For instance, it’s not uncommon for panels to interview the applicants these days. You can tell a lot by body language and how they interact with one another. And unless I’ve missed something, patients and the public have eyes and ears as well. Use them.

6. ‘Be prepared to meet yourself.’
Talking of researchers being interviewed…

One day, as a teenager, I was standing at the bar in a pub. A man kept looking at me from the other side of the counter. I became
increasingly disconcerted as this wasn’t a pub to be conspicuous in. And then I realised it was my reflection in the mirror behind the bar.

At some point, a team will appear before the panel with a patient, carer or member of the public alongside them. They might be a co-applicant. They might not be. The point is, if they are there, then I think you should ask them a question. Particularly if no one else has. What you want to know is: how much part of the team do they feel? Why are they there?

7. ‘It’s ok to lose 5:1.’
Most review panels use some sort of scoring system to help them reach a decision. Typically you are asked to give your score as part of your initial assessment (sometimes in writing before the meeting, sometimes at it) and then there’s a period of moderation in the panel to reach an agreed score. This happens once everyone’s opinion has been heard.

The first time you are informed you have to do this I guarantee you will panic. In the same way that you would if asked to turn up with the same colour underwear as your other panel members. How will I know? Will I look stupid? How do they know? Is there a secret code or initiation ceremony?

The important point is, you must give scores that reflect your opinion based on the criteria given. No one else’s. If you can support it with a cogent argument, people will respect you. Nor should you play safe by putting everything in the mid-range. That would be like living with a Liberal Democrat.

8. ‘Good manners go a long way.’ However much you dislike an application or are irritated by the applicants, keep your cool. The best demolitions of ideas and arguments I have heard have been those that are softly spoken and measured in tone.
You can always kick and scream in your hotel room afterwards like the rock star you always wanted to be.

9. ‘Your responsibility doesn’t finish at the door.’
My experience is that whatever we might think of our colleagues running these panels, they are actually trying to do the right thing. It’s hard work. Complicated. Inflated egos surround you. The wheels of the institution you work for often turn slowly.

So your feedback can be enormously helpful to them. If it’s positive don’t hold onto it. If it’s negative, share it but do so
constructively with one or two suggested solutions.

If your experience is a bad one, then ask the Secretariat how you raise this with them and the Chair. Get it dealt with but don’t let it fester.

10. ‘Safety in numbers.’
If there’s a.n.other lay member on the panel – and there should be – work together. You should not collude in how you reach an opinion or score but you can share thoughts about the things you look for, any trends in the applications and more. You will also have respective strengths that might complement each other when the panel meets.

Suggest to the organisation that all the lay reviewers are supported to get together to review how things are going. This could be helpful to improving the scheme in the future.

And finally…

The only other thing I would say is that when I started doing this I found being on a panel one of the most intimidating experiences of my life. But now it is one of the most enjoyable. It’s interesting. I love meeting and working with old and new colleagues. And I feel privileged to get to see so many good ideas in gestation.

Enjoy.

The only other thing I would say is that when I started doing this I found being on a panel one of the most intimidating experiences of my life. But now it is one of the most enjoyable. It’s interesting. I love meeting and working with old and new colleagues. I feel privileged to get to see so many good ideas in gestation. /

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

Read all about it #WorldMentalHealthDay – Research Special!

In case you have just woken up, today is World Mental Health Day.  This year’s focus is on schizophrenia but a lot of other things are going on about mental health issues in general.

In no particular order, but with thanks to friends and colleagues for sending these to me, here are some interesting things happening with a research flavour:

A new Alliance of Mental Health Research Funders (AMHRF) has been established with some fantastic names associated with it such as the McPin Foundation.  The Alliance has been quick of the mark in issuing a manifesto for mental health research with one eye most clearly on next year’s General Election.

The British Psychological Society and Royal College of Psychiatrists have called for more funding for mental health research.  See here. A special issue of Evidence-Based Mental Health has been produced with a focus on schizophrenia and the magazine is also doing a tweet chat on 17th October – hashtag is #ebmhchat.

From an NIHR point of view you may wish to check out the PARADES study being conducted out of Nottingham University looking at bipolar disease.  It’s £2 million over 5 years with the aim of helping people with bipolar disease manage their condition themselves.  Official NIHR stuff here.

It would be remiss not to mention the new James Lind Alliance Priority Setting Partnership in bipolar disease being conducted by the NIHR BRC at Oxford, the mental health research charity ‘MQ’ and others.

And the Secretary of State for Health Jeremy Hunt is making a speech at the Royal College of Psychiatrists today setting out a ream of new measures including a push to get FTSE 100 companies to sign up to the Time to Change anti-stigma campaign, performing performance tables for NHS Trusts of mental health, and asking the College President, Simon Wesseley, to lead a group to define good mental health practice.  How do I know? Because the Dundee local press say so.

Very happy to add contributions and other items.

 

And the Nobel Prize for public involvement in health…..

It is wonderful news that British professor, John O’Keefe has won this year’s Nobel Prize for Medicine for his discovery of the brain’s ‘GPS’ system.
http://www.telegraph.co.uk/science/science-news/11143190/British-professor-wins-Nobel-Prize-for-medicine.html

For science. For families coping with neurological disease. And for my institution, University College London (UCL), which now hosts my NIHR post as National Director.

Good on John O’Keefe also for taking the opportunity of his prize to fire off some broadsides at the Government about immigration policy and animal research. That’s called getting your gong and then banging it very, very loudly! If only more recipients did the same.

The Nobel Prize is an accolade bestowed on the deserving by an independent committee.

But, nonetheless, yesterday’s news about O’Keefe caused me to reflect on how good science is at rewarding and recognising those among its number who have pushed the boundaries of scientific knowledge. Or similar. In early summer you may have heard that the Chief Medical Officer, Professor Dame Sally Davies, was made a Fellow of the Royal Society.

Medals, Fellowships, ribbons and plain old cash prizes are used to applaud and incentivise colleagues. Being outside the ‘club’ can make us cynical about these things. On occasion we have every right to be. But whoever began the practice knew a thing or two about the importance of celebration.

So where’s our Nobel Prize for Public Involvement in Science then?

Well, there’s no point kicking and screaming in a tantrum. First, we ourselves need to do a better job at celebrating and rewarding the work of our own. Awards, rewards, recognition and more, are in short supply across our movement. We do too little to praise our peers. And if we are not going too why should others?

It may be an unpopular view and an odd one for an old (but soft) leftie, that I have never really had an issue with the honours system, Royalty or the suchlike. Yes, they can be distasteful. But in the same way that a supporting wall is in my house, I fear more what might happen if it disappears than what it stands for.

So perhaps we should institute some national awards for public involvement in research. But let’s start today – and without wishing to sound too much like a self-help manual – by funding cause to cebrate our cause and those who champion alongside us. Say:
‘Colleague, can I just say how much I admire what you do to make public involvement happen. It’s inspiring to work alongside you. Thank you for what you do.’

I’d like to use those words by way of introducing this new INVOLVE report of the event they hosted in July bringing together over 100 public involvement leads from across NIHR. But also as a form of recognition for everything that they are doing to champion public involvement.

http://www.invo.org.uk/posttypenews/public-involvement-leads-meeting/

Yes, that was a roundabout way just to send everyone a link to a report wasn’t it! :))

Have a good day.

The art of lay reviewing in health research: some pointers

A little while ago someone suggested that I write something about my
approach to lay reviewing in health research.

Not so much a ‘how to’ guide as there are lots of these and very good
they are too. More, an insight into the questions I ask myself when
forming an opinion on an application for funding. Whether it be funding for a specific research project or a new research organisation.

For lay reviewing is an art, a matter of applying one’s judgement to
help a funder decide whether what is being proposed is not just going to work from a scientific point of view but from a patient and public one too.

This week I spent two days sitting on a panel for the Welsh Government
which was selecting their new Biomedical Research Centres and Units.
The lay reviewers were excellent. As was the way in which their review comments were listened to and respected by the panel Chair and other members.

So here’s my ten pointers or should I say pointers for ten!

Q1. Who will benefit from this research?
Has the team clearly set out how their proposal will addresses patient need and expressed what this need is? How do they know and how have they come to this view (see Q2 below). Normally I like to see some data here about numbers of people affected, limitations of current treatments and perhaps a sense of what this means to patients, their families and the health and social care system. Without this I think you are within your rights to ask
whether what is proposed is a patient priority? There may be other
valid reasons why the work should be undertaken but is that made
clear and the reason for not including patients and the public a sound one.

Q2. Have there been any pre-nuptials?
These days I would expect some evidence being put forward in the application that the team has already involved patients and the public to a) identify what they are doing is a priority, b) help design the project and it’s methodology and c) develop a public involvement plan that fits with the project. Time and again the evidence shows that public involvement falters during the course of a project if not enough time is given over to it at an early stage and, ideally, as the project is being put together. And there’s
lots of ways in which researchers can do this. Some funders like the
Wellcome Trust offer researchers small pots of money to develop plans around what they term ‘engagement’ and NIHR’s Research Design Service (RDS) does similar.

Q3. How much of the public involvement plan is in the ‘future perfect’ tense?
Let’s face it. This is a proposal so there’s going to be a lot
of ‘will-ing’ expressed. To an extent you can’t help but take some of
this on trust. But you should be look for some assurances that this trust is not misplaced. Clear statements about ‘how’ they will approach the task is one. Also, whether clear goals for public involvement are set out and a timeline for achieving these. At the very least, these are then things that can be monitored and tracked as the work progresses. You would also want to then see some involvement of patients and the public in this reporting and monitoring.

Q4. Will the public involvement operate under a glass ceiling?
Here we are really talking about issues around governance. Ask yourself howthis team or organisation will be making decisions? Then ask yourself
whether you can hear the patient voice in this? And will patients and
the public be able to raise concerns with the Board or leadership should they need to? Often the difficulty in public involvement is that when things go wrong it’s difficult to elevate the issue to a place where the issue
can be considered and decisions made. At the very least I would expect
patients and the public to be on the Board or equivalent forum. You might also want to ask yourself whether it is clear who is going to lead on public involvement within the team: a junior researchers or the Principal Investigator. That can be pretty telling on how important public involvement will be considered.

Q5. Is public involvement off-label?
I nearly called this ‘the dreaded advisory board.’ For it is the easiest mechanism for research teams or institutions to use as a place to put all those troublesome patients and the public and perhaps others as well. People that they are told they should work more closely with but don’t really want too. Don’t get me wrong, some of these boards work really well? The secret of their success – and the questions you should ask – are: where do they fit in with the governance? Who will chair them and sit on them? How are they supported? And what they will do? Even at the start of a project I would expect applicants to know the sorts of questions they need this group of ‘experts’ to address.

Q6. Is it a one-person operation?
A great friend and colleague of mine once said to me that when asked by people how they can find a way of not working with the usual suspects will say: ‘have you seen the unusual suspects?’ It is inevitable for the same names to crop up in people’s public involvement plans. Particularly if the applicants fall into the same condition area or part of the world. All I would say is that these days, and with the networks now available to people, there seems no excuse for researchers or research teams not to make an effort to source a wider view. Also, it concerns me when quite so much emphasis is put on one person not least because of the stress that can mean (see also Q8).

Q7. Is it charity or people they are after?
So we know how this one goes. Under the public involvement plan there is an eloquent description of the wonderful relationship people have formed with ‘x’ charity – ‘the leading voice of ‘x’ in the country.’ Of course, charities are very important in making research happen. They can bring patient voice but also important funds. But they can also be highly corporate in their view. The problems arise when this singular relationship with a charity is unaccommodating of other views. So, how will they reach the patient voice that might not be represented by the named charity?

Q8: Are they making a rod for their own back?
Let’s be realistic, no team or organisation or company for that matter has money to do everything? So, we should beware of the team that says it’s going to do 40 focus groups to write a patient leaflet as much as we should the team that says they will put it on the website for people to find and edit over a few days? Assuming we are content with the answers to Q1-7, what I really want to see now is a clear expression of the issues or questions that patients and the public will be asked to address and the methodology for doing this. But it seems important in this day and age that the plan feels appropriate, measured and a good use of money. To be honest I think you can tell quite quickly from an application – especially in its tone and style – when researchers and public colleagues have reached a state of mutuality in how they intend to work together.

Q9: ‘Is it a house built on sand?’
Nice research, shame about the budget. Actually, that should be: nice public involvement plan, shame about the budget. What you really want to see here is a clear presentation of the budget that will be provided to support public involvement. In particular; expenses and reimbursement of public involvement colleagues; the running of meetings and events and; learning and development. If it is not there, we have every right to ask why and where it is.

Q10. ‘How will patients and the public learn about this work when the results are out?’
These days everyone is asking about the impact of research. Quite rightly so. And most funders in their forms will ask teams to set out how they intend to disseminate the results of their research when it is completed. Cue two lines about publication in academic journals and presenting at international conferences. Or a line or two about building a website! But from a public involvement point of view neither really cut it. Unless things have changed vastly since I last looked, the public are not known for their readership of academic journals or attendance at scientific conferences. Websites also have their limitations. But there are a vast array of old and new tools in communications that are not expensive and remain better ways of reaching people – from articles in patient group newsletters to using social media. ‘Know thy audience’ is the motto here. Because if you know your audience you will likely know the places they are more likely to look for information.

So, there you go. It’s not intended to be exhaustive and i am sure many other questions could just as easily be included. In fact you have suggestions, please do add them as a comment to this piece.

One last point, And this is about behaviours.

It is simply that we all have our own way of doing things. In my book, politeness, decency and respect goes a long way. And I tend to think that the vast majority of people whose work lands in front of me are trying to do a difficult job in often trying circumstances. My role is therefore not to trip them up but to help where I can to make what they are doing even better.

s

Cancer research ‘sales’ to patients remain flat

Today sees the annual Cancer Patient Experience Survey published.

For the third year running it looks at the extent to which people with cancer are being told about the opportunity to take part in research. Also, how many take up that opportunity. National data is published and then statistics are provided by NHS Trust and tumour type.

The results are not that encouraging. Since the survey started including questions about research, the dial has been stuck at less than 1 in 3 people having that possibly life-saving conversation with their doctor. If anything there is a slight trend downwards  In 2012 it was 33%, inn 2013 it was 32% and 2014, 31% (see pages 61 onwards of the report).  If you have brain or haematological cancer the figure is 37%. If you have skin or urological cancer it’s 17% and 14% respectively.

I am sure some people would say the drift downward is a statistically insignificant drop. But consider this.

For arguments sake, say cancer research is a business. And say patients with cancer are its customers. Then in business terminology we would be informing the stock market that sales are flat, the growth forecast is poor, and there may be a case for issuing a profits warning. And we all know what has happened to even our biggest companies like Tesco when this happens.

What are the causes for this lack of ‘growth’ in the numbers of people with cancer being offered the opportunity to be part of a clinical trial? Why is this happening in a clinical area which had had the longest run-up at promoting research to patients?

I don’t know for sure, is the answer. But I hope that it is an agenda item at the next board meeting of the National Cancer Research Institute (NCRI). Finding out why and putting in measures for improvement will be important.
Arguably, for instance, the cancer patient experience survey should be one of its performance measures. Personally I would like to see us aim for results nearer 50% and 80% by 2016 and 2019 respectively. Arbitrary perhaps but we need to be aiming for something.

I do have an opinion as to what’s not happening. It may be wrong. Nor is it likely to be the whole picture. But it’s based on conversations with public involvement colleagues in cancer and others around the country over recent months.

I think our consumer groups in cancer are not being listened to as much as they should be. I think ‘change’ may be drawing them away from the business at hand. I think that they are not being given the funding and support necessary to be what they can be – an important part of the ‘sales force’ that delivers on the NHS Constitution pledge that every patient has a right to information about research. Finally, I think we are failing to engage their colleagues in the NHS workforce sufficiently in this agenda. But that goes for all conditions.

If I were invited to that next NCRI Board Meeting I would be encouraging them to look at NIHR’s strategic framework for increasing participation in research ‘Promoting a research active nation.’ It doesn’t hold all the answers. However, I would be suggesting they look at how to translate its clear and considered approach – from the research ambassadors programme to the ‘OK to ask’ campaign – to cancer. And then to back it strongly.

There are some reasons to be optimistic. The members of the NCRI Consumer Liaison Group are a formidable force and well-led. Our cancer researchers and clinicians are committed. Cancer Research UK now has a public engagement strategy, budget and team in place and will be putting more weight behind this agenda in the next 12 months. Let’s hope other cancer charities follow suit.

For this results is not good enough for people with cancer and their families.

If AHSNs are failing can we at last have a democratic space for innovation in the NHS?

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?

Are we being cynical enough in public involvement?

I am sure you can imagine the following scenario even if you haven’t witnessed it in person.

A football game is poised delicately at 0:0. The home side get the ball and give it to their striker who dribbles past the away side’s last defender. The striker has only the goalkeeper to beat and surely win the game. But the defender catches up. He nudges the striker as he enters the penalty box. The striker falls to the ground all too easily. Penalty!

The home fans cheer and applaud. He did it for the team, OUR team. The away fans scream and boo at the cynicism of the player. How dare he?

I was thinking about this scenario after hearing Vivienne Parry’s excellent documentary on BBC Radio 4 last this week: ‘Patients doing it for themselves,’ about participant-led research. I am sure you can still get it on BBC iPlayer http://www.bbc.co.uk/programmes/b04grspl

Do listen. Public involvement could certainly do with the airtime.

In fact wouldn’t it be great to one day hear presenters hand over to their ‘Patient Correspondent’ or, indeed, for the presenters themselves to be a patient? God forbid we might even have a living, breathing patient present a health research programme, a whole series or be guest editor of the Today programme.

It’s certainly clear from the evidence given to the Breaking Boundaries review that people want us to do more to raise public awareness of public involvement in research. As a movement, they say, we are under-utilising traditional and social media in ways which would turn us from being an interesting phenomena, a curiosity of research, into a topic of discussion at the family dinner table or, indeed, pillow talk.

But I also wonder if we are being somewhat naive about how this publicity is going to happen – or should happen – that we deserve it simply because we are doing a good thing, performing a public service.

Even then, it is striking how we struggle to organise ourselves to come together and make this happen. Especially when compared to our professional colleagues.

For a while now I have been involved with a group of medics who have been setting about the task of establishing a new field in medicine. It has been interesting to see them forget come together to make it happen and with great focus. They are working with patients, other professional groupings and their relevant Royal College. Personal and institutional agendas are being set aside. Nearly two years on, it has been incredible to see the progress they have made.

Public involvement is also an emerging field if you like. It is barely 20-30 years old. Yet we arguably do not demonstrate the same single-mindless. And sometimes we are fighting ourselves or clambering over each other to get attention.

I was telling a friend lately that I have been reviewing a fair number of papers and articles for academic journals. In every case the piece has been rejected based on the reviewer comments.

Many of my fellow reviewers are patient leaders. Their critique has often been sound (but not always). The resulting decision by the editorial team has been technically correct because of it. But is it the right one politically for us? At this point in our development is the airtime not of greater value than whether it makes the grade academically? Perhaps we should have scored it differently as reviewers? To give it a better chance of publication. Mmmmm.

When I told all this to my friend (who has nothing to do with public involvement) he said: ‘Sounds like you are all being a bit naive: shouldn’t you be a bit more cynical and learn to play the game better?’

So what do you think? Should we dive in the box? Or would that be an own goal?

This autumn we will all be wearing….. ‘stratified medicine.’ New reports by ABPI and TSB

I note that it is London Fashion Week.  I look forward to finding out what colours are ‘in’ or ‘out,’ what I should or should not be wearing over the next 12 months.

Science is no stranger to fashions or trends.  All of a sudden you can find yourself deluged with reports and the such like about a particular topic.  It’s not always clear why.  Or what might have prompted it.  But there you go.

I suspect we will be talking a lot about stratified medicine this autumn.  Last Thursday the Association of British Pharmaceutical Industries (ABPI) held a roundtable to launch a progress report on its 2009 ‘white paper’ on stratified medicine.  The report is entitled ‘The stratification of disease for personalised medicine.’  It notes the solid progress made in the  UK over the last five years but says we are possibly off the pace if we want to be a world leader. My colleague Louise Leong has written a helpful blog here summarising the report which you can find here.

ABPI is also hosting a follow-up conference on stratified medicine on 20th November with Alastair Kent from the Genetic Alliance UK taking up the patient mantle.

The ABPI notes in passing some of the issues around patient and public information and understanding that need to be addressed. But no more than this.

So, if you want a real insight into the issues for patients and the public, Irecommend you read the new report out today on Innovate UK‘s (formerly known as the Technology Strategy Board (TSB)) website.  It’s called ‘Stratified medicine: a public dialogue.’   And it summarises the public dialogue exercise conducted by OPM earlier this year.

I confess to being a little surprised that I stumbled upon the report today because I was on the Oversight Group and hadn’t received any advance notice that it was coming out.  Maybe I just missed it totally although I don’t think I did.  It seems a little discourteous to myself and other ‘Oversight’ members to say the least.

Regardless of this, it is a shame that such a report is not getting more of a push by those who commissioned it.  This is important stuff.  And some of its messages are important matters of debate even if they might not be that palatable to those who would prefer a smooth scientific consensus to rule the day.

In particular, the OPM dialogue exercise identified challenges in four key areas as follows:

Definition and communication: challenges

— Having a clear, consistent definition of stratified medicine

— Presenting a realistic picture of stratified medicine, its pros and cons

— Continuing to engage the public and patients

Implications for patients and care: challenges

— Support patients to make sound treatment decisions

— Support patients for whom there is no current treatment

— Provide the right facilities and training to healthcare professionals

Social issues and consequences: challenges

— Understand and mitigate any implications for equality

— Define the role of the private sector in developing stratified medicine

— Develop understanding of the costs/benefits of stratified medicine

Research, testing and data sharing: challenges

— Give research participants a choice about how and who uses their data

— Reconcile the role and perception of the medical research industry

— Engage the public in regulation on data sharing

That last section will be of interest to those people who have followed the debate around sharing of personal data.* What it says is that the public want to be part of research that reflects their needs and interests. But trust is not at the levels it should be to make them feel confident and comfortable when it comes sharing data.  Especially when they see this data being shared with the private sector.  That’s the task ahead of us all – to build this level of trust.

I rather liked the comment in the report from a participant in the dialogue exercise: that the story of stratified medicine needs to be told from the point of view of the person in the clinic and their health professional.  Not from the point of view of a Minister or the organisations it might benefit.

Perhaps the rubicon yet to be crossed is that the proponents of stratified medicine continue to parade its wears on the catwalk and have yet to appreciate that, for the rest of us, it’s a question of what it will look like ‘off-the-rack.’

Health Research Authority (HRA) draft guidance on sharing trial results with research participants and more!

The Health Research Authority (HRA) is to be congratulated on its draft guidance to researchers on providing information to participants at the end of the study.  The guidance is open for consultation until the end of this month.

It takes a common-sense approach to sharing trial results with study participants. I challenge any researcher not to find a way of giving people access to study results if they so wish, after reading the document. 

Two paragraphs in the document struck me as particularly refreshing.  The first concerns thanking people for their contribution and states:

‘You should take the opportunity to thank participants for their time and interest and acknowledge the contribution that they have made to research and the improvement of healthcare. It is important that all research participants feel valued and that their contribution has made a difference. This may seem obvious but it is frequently neglected.’

The second encourages researchers to consider asking research participants to become more involved in research after a study finishes.  It says:

Invitation to take part in patient involvement

‘There is an increasing requirement to involve patients and public in the design and conduct of health research. Well-structured involvement can lead to more robust study designs with improved recruitment and lower dropout rates. One way of recruiting people to take part in this type of activity is to invite participants as they coming to the end of study to join a patient involvement group to help provide advice on future studies.

Participation in a health research study may have sparked an interest in research and this information sheet offers an opportunity for such patients to be invited to continue their involvement.’

I mean, ‘Praise the Lord.’  At last a research organisation that has cottoned onto the fact that participation might be a route to a more meaningful and productive partnership.

 

 

 

Sciencewise: 10/10 see you again – I sincerely hope so!

Sciencewise, the Government funded body which aims to improve science and technology policy-making by making better use of public dialogue, is celebrating its tenth birthday this year.

Set up in 2004 in the wake of the fiasco that was GM foods, Sciencewise has done much within Whitehall and Westminster to advance the case for a more open, robust and consistent approach to developing a dialogue with the public.  And to demonstrate how it can be done.  It can not have been easy.

Today it has published some lessons and reflection from the past ten years.  They are collected in a short booklet entitled: ‘The best of: Sciencewise reflections on public dialogue.’  There was also a webinar today which I could not attend.

Some of those lessons – such as the importance of public dialogue in the early stages of policy-making – may seem obvious.  But unfortunately they need rehearsing.  Dialogue in hindsight remains all too common (it is a key message coming from patients and the public in the ‘Breaking Boundaries’ review, for instance).

They are therefore timely reminders for those of you who are about to embark on, as I am, a piece of work involving public dialogue.  I am chairing the Health Research Authority’s (HRA) second public dialogue project.  The first can be found here.  We are just about to appoint the organisations to help us do the work and I know the resources and further reading in this pamphlet will help me and the oversight group stay true to the principles of public dialogue.

Some random thoughts came to me as I read the short version of the booklet.  It is true to say that in this age of small, central Government, there is now a real desire to get an insight into how the public think and feel about an issue so that policies can be more effectively and efficiently developed.  But Government’s do a poor job of sharing this insight as they develop policy.

Our dialogue exercises tend to focus on the ‘what’ and the ‘why.’  We ask the public less about the ‘how.’  This would seem an oversight.  Government is less capable and less willing to do things from the centre and yet my sense is that the public still view Ministers and Government as bearing the most responsibility to make things happen.  Our discourse should be as much about correcting this assumption and getting their ideas on how to build new ways of getting things done.

It would have been nice to have heard reflections from people about how they feel  Sciencewise – in terms of individual projects and in the round – has changed the public debate about science and technology as well as the degree to which it has influenced policy and implementation.  I suspect it has been more than we think, that its influence has been considerable behind the closed doors of Whitehall.

Also, given the rich material that Sciencewise must now have at its disposal (as well as NIHR for that matter following Breaking Boundaries), surely there is a case for setting up a National Library of Public Dialogue and Involvement in Science)?

Lastly, I do hope we see another ten years of Sciencewise, I really do.  It has its faults and its critics but it is essential to public discourse on science issues.

Are you a victim of disruptive innovation? Call now.

Family doctors say they are being swamped by patients complaining of disruptive innovation disease (DID). Employers have raised concerns over £000s that they might have to pay out in compensation to sufferers who complain they DID it.

But practical help may be just around the corner for these people and their families. I am about to launch a new charity Assistance for Victims Of Innovation Disruption (AVOID). There will also be a helpline: 1-GET-YOUR-OWN-BACK,

Seriously, I have been heartened this summer by news that Harvard academics have demolished the theory behind disruptive innovation and roundly criticised its proponents. See this week’s Marketing Week for the story in a nutshell:
http://www.marketingmagazine.co.uk/article/1310476/why-disruption-innovation-not-its-cracked

This is what academics are for, I tell you!

Articulating what many people have thought but didn’t have enough letters after their name to be listened to, ‘disruptive innovation,’ they say, is no more than an interesting explanation of why big companies fail in the face of upstart companies nimble on their feet. In fact it’s a more mundane version of the David and Goliath story. Only in this version Goliath is brought down by obesity and David’s nerdish obsession with technology But as a theory on which to base change management it holds little water and is positively dangerous.

If only we could persuade NHS leaders of the same; leaders who collectively seem to lack the intellectual braun to be anything other than copycat marauders of such bunkum. Why is the NHS such a fertile environment for such theories? They seem to spread as fast as the common cold and with about as much evidence behind them as homeopathy.

Even I found myself using the term in an email to colleagues this week. What a pratt I thought to myself when I re-read it. All I really mean is: we need some new ideas and to challenge and encourage each other to think then.

When I look at the places where so-called disruptive innovation has taken place all I see is lives ruined and organisations destroyed; smoke rises over the remains. For, in the same way, that people once compared the rise of patient experience to the ‘Arab Spring’ they have forgotten their history.

Revolutions more often than not turn in on themselves. The reasoned protagonists who inspired them are soon murdered by those motivated only by self-interest. The system which it is trying to replace often reacts more violently than anyone can imagine.

One of the fundamental problems I have with disruptive innovation as a concept is that it has no room for ideas around duty of care. It therefore is anathema to how we should run public services.
Activities such as public involvement which depend on developmental approaches, nurturing, humanity, continuity and a degree of stability are particularly vulnerable.

This week I have spoken to several public involvement colleagues working in organisations that for the moment should remain nameless. They talk about having three managers in as many months. Money being withdrawn as if it is a challenge they should relish. Of public involvement being redefined and spat back out at them as if they are stupid. Hideous waste of public money reinventing the wheel. Approaches to public involvement that are not about empowerment but control. All in the name of disruptive innovation.

We could be on the verge of getting ourselves in serious trouble if we don’t question this madness. At the very least, falling back several steps.

Those who argue for disruptive innovation are the velociraptors of the NHS. Grab a shiny tea tray and hold it up so they can see their reflection.

Have a great weekend.

The low hum of mediocrity can never be acceptable to patients

You can’t beat a good juxtaposition. And August seems to throw up more than its fair share.

It’s as if the soil, hard-packed by hardened hacks over many months, has been freshly tilled by novice reporters, revealing pearl white fragments of porcelain that say as much about now, as then.

This is the slow news month when the 30 year rule is lifted on a new batch of public records. And run-of-the mill things like the release of air accident reports assume a status unwarranted.

So it was last week with the Air Accidents Investigation Branch report on the FlyBe pilot whose prosthetic arm had become detached during landing. You could sense the media’s rising frustration at their inability to sensationalise this matter.

In the face of a rather doughty pilot interviewee – also with a prosthetic arm – who took it all in his stride in that calming cabin crew tone we all know so well. The splendid retort of the company that they were proud to employ ‘competent disabled’ people. And radio phone-ins dominated by the common-sense approach of the public based on their experience of being flown safely around the world every year.

As they say, actions speak louder than words.

Meanwhile, on the same day, plans for inspecting family practices were announced by the new inspector of GPs, Sir Steve Field. Sir Steve and his merry band of inspectors will be visiting and assessing practices up and down the country. Surgeries that consistently under perform, we learnt, will be put on special measures. All sounds good.

But it begs the question from a patient perspective: what the heck’s been happening before now. As the Today presenter asked both Sir Steve and the Head of the BMA’s GP committee. Very little is the answer.

Even more confidence sapping was the tone and style of the BMA’s response. This implied that, at any given moment, a certain number of practices will always be below par. They feared a blame culture developing out of the inspection regime, they said. Then pointed out all the mitigating factors why yours or my practice might be poor. From premises to funding.
http://m.bma.org.uk/news-views-analysis/news/2014/august/gp-inspection-scheme-raises-blame-culture-fears

There’s nothing like getting your excuses in first is there? All of which the media seemed to accept with a sanguine shrug of its shoulders.

How did we get to this point where it seems better to defend the low hum of mediocrity in our health services rather than aspire to make every landing a safe and comfortable one for patients and their families?

I mean, would you fly with an airline run by the BMA?

Canada takes a whole-system approach to public involvement in research

Last week, at the INVOLVE meeting for NIHR public involvement leads, a colleague asked me whether our strategic review would get near to a national strategy. I said I was pretty confident it would. Otherwise what’s the point.

You can see a copy of my presentation slides inducing an overview of the review findings here if you are interested:
http://www.slideshare.net/mobile/SDenegri/presentation-to-national-institute-for-health-research-nihr-public-involvement-leads

One of the most exciting but difficult challenges in front of the review panel is how we envision the future development of public involvement. So that it becomes fully integrated across NIHR over the next 5-10 years. So that in terms of impact and benefits the whole is greater than the sum of the parts.

The current focus on the ‘parts’ rather than ‘the whole’ is one of the areas of greatest risk in terms of things like the transition to local clinical research networks (LCRNs). It also supposes that people can, and are willing to, shift their allegiances from one way of doing things to another, just like that.

Here we might learn a great deal from our international colleagues who live and breathe the difficulties of federal systems. Like the Canadians.

For the last couple of years the Canadian Institute for Health Research (CIHR) has been establishing a network of SPORs – it stands for Support for Patient Orientated Research – based around its provinces.

They all share the same aims and principles including a commitment to ‘patient engagement.’ But how they are built is locally defined so as to ensure each reflects the needs of the population and the research strengths in the province. I sit on the international panel that has been reviewing these units as they have developed and I am struck by the sense of community that comes through – in stark contrast to the UK system which tends to emphasise the role of the individual.

Canada – while celebrating the different approaches to supporting research across the country – has also recognised that allowing the different parts to swell or shrink too much in certain areas can only end up in an ill-fitting jigsaw puzzle which is of no value to anyone.

So in public involvement it has spent the last six months defining – with patients, carers and other partners – a national framework for engagement which it published earlier this month. You can find it here:
http://www.cihr-irsc.gc.ca/e/48413.html#a2

Having been involved in this work a little at the beginning of the year – and knowing how challenging some aspects of pulling it together were – it’s great to see it now see light of day. I particularly like the guiding principles on ‘inclusiveness’ and ‘co-build.’

Whatever our differences we have to work off the same page.

What have people told us about public involvement in research?

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.

Statins: medicine sprinkles its pills but this ain’t no fairy dust

When a news story features as a topic of conversation in the queue for the school play you know something is happening, right?

On Friday I overheard two parents talking about statins while waiting for the doors to open for the final performance of the ‘Aristocrats.’

Earlier in the day the National Institute for Healthcare Excellence (NICHE) had said many millions more people should be prescribed statins than are now on them, to prevent heart disease. Cue an unholy row within the medical profession as to whether the evidence really does support such a directive? And an inevitable slew of
post-announcement stories about the harmful effects of statins.

‘You don’t know what to believe any more do you?’ said one parent. ‘It can’t be good for you to keep taking all these pills, though’ said another.

Yes, it all leaves you and me – the citizen – just a little bit stranded.

When I heard the news come over the wireless on Friday morning my first reaction was that NICE had taken leave of its senses. Not so much because of what it said but how it said it?

Here we were, 18 million adults being crammed into the medical profession’s consulting room to be told what’s good for us. It sounded like the arrogant proclamation of a despotic nation. Not what would you want from your drugs regulator.

Surely it asked its communications people how it should handle the news sensitively and moderately? What did NICE’s Citizens Council think of the decision? And if they weren’t consulted why not, given the wider societal and cultural implications that an announcement of this sort has? We have significant ‘relationship’ issues with medicines – from taking too many to not taking the ones we are supposed too – as a society, and I can’t see how this helps.

In fact, given the ready divisions among doctors about the merits of statins, you have to question whether it was responsible to drop this sort of news on us from such a very great height and without a) some serious work beforehand on developing a clear message that
professional bodies and patient groups could stand behind and, b) putting some decision aids in the hands of citizens.

The exchange in the queue may cause many to worry. Or to shake their heads about the ignorance of people. But oddly it gives me reason to be optimistic. That people will treat what they are hearing with the best pill of all – a good dose of common sense.

Talk to your doctor.

The play was good by the way.

It’s the citizen, stupid!

Before I start is anyone else struck by the similarities between the hysteria of some science commentators over the new Science Minister, Greg Clark’s, signing of an EDM about homeopathy in 2007. And the reaction of the enslaved and brainwashed monsters in Monsters Inc to being touched by a child or even just their clothing in the course of their work to power the city by collecting children’s screams…..!? ….

The General Election campaign more or less started this week with David Cameron’s cabinet reshuffle. It’s going to be a long summer, autumn, winter and spring in the run-up to May 2015.

But we may as well start thinking about our own manifesto, campaign and election rhetoric then. Time to reclaim the language of public involvement and hold our politicians and policy-makers to account.

My campaign slogan is going to be: ‘It’s the citizen, stupid.’

During the 1992 US Presidential Election Bill Clinton’s strategist, James Carville, crafted three key messages to keep the campaign focused on track. The most famous of these is: ‘The economy, stupid.’

The insistent calling to account over the recession hit economy was the undoing of the sitting President George Bush Sr who, we should not forget, had been riding high in the pills following the first Iraq war.

In similar vein to Clinton and Carville I shall be asking our politicians: How will you empower the citizen? How will you involve us in your decisions? How will you help my community?

Interestingly, the other two messages Carville wrote on his campaign noticeboard way back then were:
– Change versus more of the same
– Don’t forget health care
I am not sure about that first one. On that second, I think Cicero put it best don’t you, when he said: ‘Let the welfare of the people be the ultimate law.’

There you go, from Randall Boggs to Bill Clinton to Cicero. Have a good day.

Patients as renewable energy? We’re bloody knackered Simon.

You may recall a few weeks ago the new NHS Chief Executive, Simon Stevens, referring to patients and carers as the ‘renewable energy’ in health and social care. A good notion. A noble notion.

Yet I am having far too many conversations at the moment which are with, or about, colleagues who are flat-out exhausted by the demands being placed on them. An increasing number are taking themselves out of the picture either permanently or temporarily for their own well being. That’s if they can. Not all of us have this choice.

This can’t be right. What are we doing to people?

When I think of the overdrive that NHS organisations have gone into to ‘capture’ (now there’s a telling word) the patient experience a certain image springs to mind. It is the scene in the film version of H.G.Wells’ Time Machine of thousands of people in the future being called by their overseers and disappearing into the mouth of a huge cave. They are never seen again.

It is of perennial shame that, in our health and social care system, patients and carers generally feel taken for granted when giving their wisdom willingly to make the system better. It’s not just about expenses and reimbursement either. Pastoral care is in short supply. Roles that are supposedly about one or two days a week become 24/7. You will be lucky to find a decent volunteer policy in place.

It can be frightening, exhausting, dispiriting and frankly bad for one’s health to be plying the lone furrow of public involvement. All seems set against you. So you try harder, thinking that any failure must be your fault. Until, before long, you are stuck in what can only be termed an abusive relationship where everything you do feels taken for granted. It’s no way to treat citizens. It’s the surest way to achieve burn-out.

And it can be similar for the increasing numbers of people who are now doing paid roles in public involvement. In fact, I worry that these colleagues sometimes feel further stigmatised by those they serve because they receive a salary – how dare you take money, you can’t surely be on our side if that’s the case?

It’s one of the reasons I was keen for INVOLVE to bring together public involvement leads from across NIHR to meet and network and find support. 130 of them will meet in London next week and I hope that by nurturing and supporting these colleagues we can ensure patients and carers do receive the support they need in the future.

If patients and carers are really the renewable energy in health and social care then perhaps we should extend that analogy to think about everything that goes with it to make it happen – tax breaks, investment, fast-track planning permission, a Government Minister for. For at the moment this is not a win/win for patients. Only a win for a system that’s turning ever-faster.

One last thing. The best bit of my week so far was a coffee and chat with a good friend and colleague. It boosted my spirits no end. Afterwards he emailed and signed off ‘we must take of ourselves – no one else will.’

Take care of yourselves. But let’s take care of each other as well.

X

Lessons I learnt from the Alzheimer’s Society story of public involvement in research

The Alzheimer’s Society has published a new booklet entitled ’15 years of the Research Network.’ http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2261 It looks at the work of their Research Network of 250 people with dementia and carers in shaping and advancing the charity’s £5.3M research programme, some of their achievements, and a short history of how it all got started.

The story of the network – originally called Quality Research in Dementia (QRD) – is often held up to be a tale of one of the pioneering organisations of public involvement.  With some reason, not least the fact that it started its journey in 1999. The Society remains at the vanguard of charities plying this route within the not-for-profit sector many years later. It is disappointing and a matter of debate why more charities have not embraced public involvement in the same way.

I was working at the Society at the time when the idea of QRD emerged. I worked on the first public awareness campaign about dementia and research which contributed to this thought process. This won an industry award. Yet I had very little to do with the network’s setting up I am afraid. led organisations. 

The Alzheimer’s Society ‘Research Network’ story contains a number of universal lessons about public involvement in research. Some I have written about before.  But not all.  In brief, they are:

Time: It takes time to form, establish and embed public involvement in an organisation until it becomes part of normal business. No one ever tells you this at the beginning. Some people behave towards public involvement as if it should somehow flow freely once the tap is turned on. Think again.  Running water is only guaranteed if you prepare well and have a well-thought out plan in place.

Keep it simple: The quotes at the end of the booklet convey this best. The essence of public involvement is about bringing people together who have different perspectives and enabling them to focus on the same issue or challenge as equals.

Leadership: Nothing happens without leaders. But just as important as the avowed champion, is the sceptic who is brave enough to say to his colleagues: we should give this a shot because maybe, just maybe, they are right.

Continuity : Comes from money and appropriate budgeting. It is also a consequence of staff and patient leaders being supported to carry the torch. Through bad times as well as good. The Society booklet was written and produced by members of the network including many who have been there from the start. The network would not be what it is today without their staying power and memory for what it was like before. Many of them are also the patient champions who are now instrumental in the Society’s work around the Prime Minister’s Dementia Challenge.

Above the line: When it comes to public involvement in research you must be willing to put everything ‘above the line’ and up for discussion by patients and carers. It may be that you agree to put some bits off until later. But, at the beginning, you must show as an organisation that you are brave enough to listen to what people have to say – however hard – and turn this into an agenda for improving the quality of what you do.

%d bloggers like this: