#INVOLVE2014 is the perfect place for you to start using social media in public involvement: top tips

Monday saw INVOLVE publish its long awaited guidelines on using social media as part of active public involvement in research. And excellent they are too since they were put together with your help.

You can find the full document here:

And nine examples of how social media has been used in public involvement here;

As for the top tips here they are:
1. Keep it simple
2. Start slowly and build relationships
3. Make it interesting
4. Allow plenty of time and be flexible in your approach
5. Set limits and establish ground rules
6. Be responsive
7. Use social media alongside other forms of involvement

Whether you are at the INVOLVE Conference or not, what better time to start using social media…just remember to use the hashtag – #INVOLVE2014

Breaking Boundaries review of public involvement in the NIHR – Update Ahead of #INVOLVE2014

So, as you can imagine, I am limbering up today and tomorrow in preparation for the INVOLVE Conference – ‘Changing Landscapes’ - which takes place in Birmingham later this week. That means sit-ups, press-ups, gargling water and mnemonics to remember the difference between participation, engagement and involvement and other useful stuff like that.

It should be an excellent meeting and, as always, I am looking forward to seeing old friends and meeting new ones.

This year’s event has added spice because we will be talking about the strategic review of public involvement in NIHR and here’s a brief announcement about what people can expect.  It is also on the NIHR website.

Breaking Boundaries review of public involvement in the NIHR – Update

24 November 2014

Attendees at this year’s INVOLVE conference in Birmingham on 26/7 November entitled ‘Changing Landscapes,’ will hear the findings of the Breaking Boundaries strategic review of public involvement in the NIHR.

Simon Denegri, National Director for Public Participation and Engagement in Research and Chair, INVOLVE, said:

“This has been an ambitious project. We have had an amazing response from people and organisations to our call for views and ideas. We just need a bit more time to put it together and make sure it is visionary and actionable as a report. The good thing is that people at the conference will have an opportunity to shape our final approach, in particular how we address future priorities in a changing landscape.”

The Breaking Boundaries report is expected to be published before the end of the year.

Breaking Boundaries received over 500 responses from patients and the public, researchers and others, more than 80 submissions from organisations, as well as taking evidence from charities, industry and international organisations. It also held workshop sessions as part of events around the country. A number of key themes have emerged from this call including:

- The value of working with the public, and the difference it makes to the quality of research
– Inconsistencies in practice and implementation across NIHR and other funders
– Barriers to the public contributing to research including awareness, attitudes and support
– The importance of partnership and collaboration to future success
– The need to recognise and share good practice.

When asked about the future of public involvement over the next 10 years, contributors to the review have highlighted a number of priorities. These include:

- Greater public awareness of research and the NIHR’s role in making it happen
– Public involvement to be seen as normal and accepted practice
– Actionable evidence of the value of public involvement
– Locally relevant but strategically consistent implementation
– Clarity over quality and good practice in public involvement
– Agreed measures for how public involvement is making a difference
– Global partnership and better links with the NHS and other funders.

People can contribute their views on Breaking Boundaries and other public involvement issues this week using the INVOLVE Conference hashtag #INVOLVE2014


The Breaking Boundaries strategic review of public involvement was commissioned by the National Institute for Health Research (NIHR) and announced on March 31st 2014. The review panel was asked to make a report and recommendations to the NIHR according to the following terms of reference:

  • A compelling vision and clear objectives for the NIHR’s leadership in public involvement.
  • Areas where the NIHR should be looking to maximise the public’s contribution to health, social care and public health research in the future.
  • Ways in which NIHR organisations should be thinking about, linking, planning and executing public involvement, participation and engagement activities.
  • Options for the future support and organisation of public involvement across the NIHR so that it is embedded in policy and practice.
  • How the NIHR can grow a diverse and inclusive public involvement community
  • Innovations and new thinking in public involvement in health, social care and public health research.

Less haste and more speed is better for research and better for patients

The Government has today announced an Innovative Medicines and MedTech Review, beginning in early 2015. The Minister for Life Sciences, George Freeman MP, has set out a bold vision for cutting drastically the time it takes to develop and give patients access to new medicines and innovation. This news release lays out the basic aims of the review.

The language of urgency and desperation is a common accompaniment to the way in which medical research is pitched to the public.

Charities make ‘urgent appeals’ to our generosity.  Drug companies strain at the leash, only held back, they say, by red tape and grey bureaucrats.  Researchers implore us to come forward and ‘make it happen.’  Patients warn us of the human costs unless there is ‘immediate action.’ So it goes on.

They are right – or at least have every right, to make such calls. But we should be aware of the dangers to research and to patients of creating a society that is so pro-science, it forgets to ask important questions of science and itself for the matter.

At the moment, medical research has a burgeoning ‘fast movement.’  ‘Empower: Access to Medicines’ is one such lobby group that exemplifies how this agenda has come to the fore. Last week at the World Orphan Drug Congress I was struck by the number of patient organisations who came to the stand or spoke from the floor about the need for faster development times for new treatments, and speedier access to them.

Few people would deny that it takes a bafflingly long time and mind-boggling amount of money to produce new medicine; that there are surely ways in which this process can be shorted and cheapened. So no wonder Governments, major funders and regulators alike are doing all they can to make this happen – from adaptive licensing to the Health Research Authority’s (HRA) plans to establish a single approval process for approving research to happen in the NHS. (At the moment it seems everyone gets involved even the hospital porter!).

The more dangerous element to this movement is that which puts the pressure of demand – desperate and legitimate though it may be – in the driving seat. So much so that it tips the scale back towards a day when people were treated no better than guinea pigs, when doctors acted in haste or pure self-interest.

This is what is so worrying about the Medical Innovation Bill. In spite of what some patient advocates say, I fundamentally believe its passage would do serious damage to all that has been achieved in putting patient rights at the heart of the research agenda. Not to mention what it means for the enduring respect we have paid to ensuring research quality. In that sense it is the veritable wolf in sheep’s clothing. Goodness knows how it has got this far.

Clearly, as patients and the public, we have an important role in advocating for research to take place more quickly and for the fruits of its success to be made widely available. But we also have a significant role to play as active participants in research, working with researchers to make things work better and more efficiently. From being study participants to shaping its design and delivery. As the success of our clinical research networks bears witness to.

Patients and the public should be part of the pit crew not goading from the stands. That’s how we get faster, better research.

Public involvement in research to be turned into drama in groundbreaking new play

On my travels so a cut and paste of a news release about an exciting new project.

Those who know Y Touring will also be pleased to hear that it has found a loving home at last.

New theatre company: Theatre of Debate Ltd. announces inaugural project

Press Release: 13 November 2014

The creation of a new theatre company, Theatre of Debate Ltd., was announced yesterday by Nigel Townsend, former Director of Y Touring Theatre Company.

Theatre of Debate Ltd. will develop the considerable legacy of Y Touring, continuing to tour nationally with new writing that explores complex science-based issues.

Y Touring was an operation of Central YMCA, which toured schools, theatres and community centres nationally, exploring social and ethical dilemmas through its unique Theatre of Debate format. After 25 years Central YCMA closed Y Touring in September 2014.

Artistic Director Nigel Townsend said: “Now more than ever, as we move towards a population of more than 10 million and we face among many other challenges, the challenges of climate change and the food crisis, and the threat of disease, we need to engage our audiences in informed debate about our futures and the world we want to live in and the role science, the arts and digital technology will have in achieving that future. That is why we are excited at having the opportunity to keep the offer of theatre of debate open to young people through live theatre, digital technology and cinema.”

Theatre of Debate Ltd.’s inaugural production will focus on patient and public involvement (PPI) in medical research, with support from the Wellcome Trust, as well as a new partnership with the National Institute for Health Research (NIHR) Oxford Biomedical Research Centre (BRC), a partnership of OUH NHS Trust and the University of Oxford. Theatre of Debate will develop this work, which will tour schools nationally, while working towards a sustainable future with new partners in the years ahead.

Dr Sophie Petit-Zeman, Director of Patient Involvement at the NIHR Oxford BRC, who was also Y Touring’s Scientific Adviser, said “This is a hugely exciting step for Nigel and his team and for us in Oxford. We were keen to work with Y Touring as part of engaging and involving patients in research, but with the creation of Theatre of Debate we can now build an enduring partnership capitalising on enthusiasms and skills across the BRC and beyond.”

Lisa Jamieson, Head of Engaging Science at the Wellcome Trust, said: “For 19 years, Y Touring has been one of the most successful and high quality projects in the Wellcome Trust’s Engaging Science portfolio, and is extremely popular with students and teachers, as well as researchers, charities and the wider public engagement community. We look forward to seeing how Nigel and his team grow, bringing their inimitable approach to tackling tricky issues to new and varied audiences.”

Who’s making way for who in public involvement?

This morning I listened with interest to the news item about today’s Court of Appeal proceedings on whether wheelchairs users have precedence over parents with pushchairs on buses.

I know where my sympathies lie. With the wheelchair user. On balance, the consequences of denying them access are likely to be more serious and difficult to manage.

There also would seem to be a difference between applying hard fought for rights in a world that largely manifest itself as inaccessible, and widening choice for those for whom it already exists. But maybe not as much as they would like in a perfect world.

I can’t help also observing the self-righteousness with which some parents now push buggies before them (often the size and colour of small armoured cars) through crowded restaurants and streets sending the innocent into disarray. As a parent you wonder what it is they possibly fear so much to behave in such an antisocial way.

Of course the fault does not lie with any poor bus user. Rather it is at the door of the bus company, how it manages its buses and trains its staff.

But is that totally true? Does the episode that has reached the Court of Appeal tell us as much about how it is no longer the social norm to make room and accommodate others. If it was ever thus of course.

Put a hoard of carefree children, tired workers and hassled parents on a bus together and things can soon become incendiary. Even in the short 11 minute journey to our local rail station as I can testify.

Public involvement can have the manner of a bus at times. An increasingly crowded one. In September 106,000 people visited INVOLVE’s website. Two years ago it was less than one fifth of that.

Yesterday the Kings Fund put out a report about public involvement written by device users and carers among others. They note that, in their view, little progress has been made in public involvement. A glass ceiling does indeed exist and the Kings Fund is one of those organisations that – admirable though it is – has found it difficult to find room for service users in how it is governed. Go figure.

Yet it is not just about organisations making space and enabling choice. It is also how we behave towards one another.

I find it faintly dispiriting to see people collect all sorts of public involvement positions as medals on a lapel rather than offer these openings up to colleagues; especially to those who are at the beginning of their journey in public involvement. In fact this is much more troublesome to me than the curse that is more often cited – that of people staying around too long.

Listen to boardroom leaders and they will often comment on how the secret of their success and what they are most proud about is nurturing the talent around them.

We all have a responsibility to do the same, to nurture the talented and interested and make room for others.

Ireland gets to grips with public involvement in research

There are two ways to get to Dublin City Centre from the airport by taxi. You can either join the traffic that wends its way slowly overground. Or you can take the Dublin Port Tunnel which gets you there in no time at all. On behalf of all harried travellers, can I thank the person who had the vision of a tunnel.

I was in Dublin on Tuesday to attend the Irish Health Research Forum’s conference on public involvement. The Forum was set up earlier this year following a study of the research landscape in Ireland conducted by Professor Bernie Hannigan and commissioned by the Medical Research Charities Group (MRCG) of Ireland. It is worth mentioning that Professor Hannigan has recently been appointed the Director of R&D at Public Health England.

The Hannigan report entitled: ‘Health Research Landscape in Ireland: What Researchers Say’ recommended that MRCG bring together a wide coalition of partners to promote and advance health research (the aforementioned Forum). But also that there needed to be more focus on the development of public involvement. Hence yesterday’s event, a first I believe.

It was flattering to say the least that the Forum had turned to some familiar names from the UK to provoke thought and discussion: Angela Coulter from Oxford, Jennie Poppay from the University of Lancaster and Liam O’Toole from Arthritis Research UK. We are undoubtedly further ahead of them in many ways in putting public involvement on the agenda. As are other countries such as Denmark represented there by Mogens Horder.

But as we were quick to stress, it is too easy to let the shine of our successes blind us from seeing our failures over the last twenty years. They may well learn from these but we can and should also learn from the fresh approaches they will take. And with emails in my inbox from Sweden, Norway, Canada and France, we can be sure of new and innovative ways forward. A fact that is both inspiring and exciting.

Thinking about the Forum and its future role, I believe that one important and highly strategic failure has been our inability thus far to develop a shared vision among charities, Government funders, HEIs, industry, NHS England and academia about the future role of the public in health research. There have been attempts, not least through the United Kingdom Clinical Research Collaboration (UKCRC). The problem isn’t so much that people are doing their own thing. It is that these ‘things’ aren’t pushing in more or less the same direction.

Another – and I should credit Jennie Poppay for saying this at the meeting but you will here me say a great deal more about it in the coming weeks – is that lots of reasons (good reasons I should add) are given for doing public involvement. From making it more accountable to increasing the numbers of people in a study. However, focus on these reasons and the activities that might support them has perhaps led to us astray from our original purpose.

This mission is for the health research system to treat the knowledge that patients and the public gain through experience, as currency of equal value to other forms of expertise in the knowledge economy that’s going to be necessary to create to improve health and wellbeing.

I also enjoyed the comments by Eibhlin Mulroe, CEO of the Irish Platform for Patients’ Organisations, Science and Industry and Task Force Leader, EUPATI Consortium. As someone who has just entered the sector she reflected on how amazed she was that in medical research we don’t do what’s second nature and talk to the market first about the products that are needed and desired.

Hear, hear. That’s just tunnel vision. And to be avoided at all costs.

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.