public involvement

Some of the leading life sciences organisations in the UK have joined forces to issue a ‘statement of aspiration’ about the involvement of young people in research saying:

‘Collaboration between young people and commercial researchers should become an established and normal way of working. Learning from this collaboration should be actively translated wherever possible to the adult healthcare/life sciences research setting.’

The roll-call of organisations who have signed the statement includes three of the largest pharmaceutical companies in the world, the ABPI, Ethical Medicines Industry Group (EMIG), as well as the National Institute for Health Research (NIHR), Nuffield Council for Bioethics, and Health Research Authority (HRA).  Other signatories are as follows:

  • The Association of the British Pharmaceutical Industry (ABPI)
  • AstraZeneca
  • The Ethical Medicines Industry Group (EMIG)
  • GenerationR
  • GSK
  • The Health Research Authority (HRA)
  • The National Institute for Health Research (NIHR)
  • Proveca
  • Quintiles
  • Roche
  • UCB

The ground-breaking communique notes the importance of collaboration between researchers and the people whom research aims to benefit, and highlights how this is  distinct from ‘market research’ and ‘one-off’ approaches by a funder.  It emphasises the value that involving young people can have in particular, and notes the leadership that the UK has shown in developing this work.

The statement has its origins in the GenerationR conference – which took place at the Science Museum in 2013 – and subsequent report and recommendations which called for closer-working with industry.  Work since the conference has included the setting up of a GenerationR website and last autumn’s establishment of a GenerationR alliance to bring together organisations to further the work.  Not to mention initiatives by other organisations, most notably the Nuffield Council on Bioethics ‘Children in Research’ report.

The idea of a statement to be the basis of further action between the signatories was proposed at a roundtable meeting hosted by the Nuffield Council for Bioethics in April.  The full report of this meeting can be found here.

More background on the NIHR’s work with young people can be found here.

Further contact details can be found at the foot of the statement.


It’s one of the hardest things they will have to do.  It is physically and mentally draining.  For many it will feel a lonely place.  The atmosphere will be unlike anything they have ever experienced before. Some will feel as if they are in a state of suspended animation. Others will feel as if they have leapt off a cliff into the unknown. One thing is for sure: the world will never look the same again. And there is work to do, more often than not in the shadows.

Yes, today, tomorrow and for ever after, patients will be stepping into the unknown by contributing to research for the first time. As a volunteer on a clinical trial. By joining an advisory group to help researchers design their experiment.  By reading research proposals…

Each will be spacewalking in their own way.

This week we learnt a bit more from NIHR CRN about how cancer patients feel about taking part in research. They want to benefit from new treatments. But they would also like more information about what it is they are testing. They also think they should get to hear about the results.

We learnt from healthtalkonline that for researchers public involvement can also feel like stepping into the unknown.  Those who have done it, encourage their colleagues to learn from those who have, that they should not feel alone.  Many talk about the motivation gained from working with those who will ultimately benefit from their work.

We also heard how industry and patients – for such a long time on different planets – may be beginning to occupy the same orbit if not come together.  A EUPATI paper published in BMJ Open showed that lack of knowledge of one another is a barrier to closer collaboration and partnership.  For many companies, public involvement does not land well with them because it feels too nebulous a concept.

study of public involvement in primary care published in ‘Research Engagement and Involvement’ highlighted how the sustainability of public involvement was predicated on ‘organizational commitment and leadership, adequate resourcing and dedicated support infrastructure.’  Ground controllers to note.

Finally and fittingly, it seemed only right to mention this absorbing piece from Forbes magazine about David Bowie’s connections with science and medicine.

Well done Tim – you will have earned your rest this weekend.

To patients and the public everywhere who are stepping outside the capsule next week – and perhaps for the first time – good luck!






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

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

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

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

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

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

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

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

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

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

But think on this. The Americans are coming!

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

You can find the report here: And this is the summary of recommendations:

Across the NIHR it is recommended that:

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

personal support

o is accessible to all

o is appropriate and relevant to the task

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

At NIHR-wide strategic level it is recommended that:

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

Simon Denegri Sent from my Work iPhone
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I hope you will have seen or heard the news today of the positive results of a gene therapy trial for people with cystic fibrosis. And this is how The Guardian is reporting it.

Although it is early days and the improvement shown in patients only a modest one, it is nonetheless a very hopeful sign of how this approach may help people in the future.

I have no direct experience of the disease, but one of the most affecting and poignant patient stories I have witnessed was by a young woman with cf at an event at the political party conferences many years ago.  It has stayed with me ever since.  It has caused me to have a particular emotional interest – if I may call it that – in the condition.

The trial was conducted by the Cystic Fibrosis Gene Therapy Consortium which brings together scientists in the Universities of Oxford and Edinburgh with Imperial College, London.  They were formed in 2001 at the initiative and with the support of the Cystic Fibrosis Trust (CF Trust). The Trust has invested £40 million in the consortium since then and continues to do so (it announced a further £500,ooo funding just earlier this year).  But the funding environment for these sorts of projects is never easy and a few years ago the Consortium formed ‘Just Gene Therapy’ to bolster existing funding from the National Institute for Health Research (NIHR), Medical Research Council (MRC) and others.

So, the back-story of this important news today is one about the length of time it takes to do this sort of work, the importance of collaboration and the pioneering role that medical research charities have in supporting ground-breaking science.

But, above all, it is a testament to the cf community’s as a whole.  Their positive, persistent and patient backing and support through their donations.  The patients who took part in the trial, some as young as 12.  Without them, we wouldn’t be hearing this news today.