How do you think we should approach research?

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At this year’s UK Cystic Fibrosis Conference, we announced that we would be asking the community to share their ideas for our brand-new five-year research strategy. Here Dr Janet Allen, author of these strategies, looks back at where we’ve come from, and ahead to where you can help us go next.

Share your views

Our first strategy

In 2013, the Cystic Fibrosis Trust published a five-year strategy to guide its investment in research up to 2018. Back in 2012/2013, a number of people gave me very valuable advice and this influenced the final strategy. The most common requests were:

  • Don’t put all your eggs in one basket!
  • Ensure there is a balance of research areas so that everyone affected by CF can see how research may affect them at their lifestage.
  • Support the best scientists wherever they are based: UK or overseas; academia or in the biotechnology industry.
  • Encourage scientists to work together rather than compete to maximise the impact.
  • Stop competing with other CF organisations (like the Cystic Fibrosis Foundation) and start collaborating.
  • Support projects that have impact on the lives of people with cystic fibrosis. 

The results

Here are all the things we told you we’d do with our research, and what we’ve done since.

1. Outstanding research centres

What we said we'd do

Fund Strategic Research Centres (SRCs) – we said we’d create a cadre of at least 30 young scientists.

What we did

  • Funded 12 SRCs – we have a total of 90 named investigators, spread over 33 institutions and 14 countries and 41 early career fellows.
  • Established a summer studentship scheme in collaboration with the British Lung Foundation to attract the brightest and best science students into CF research.

2. Leveraging vital funds

What we said we'd do

Establish Venture and Innovation Awards (VIAs) and leverage vital funds.

What we did

Awarded 48 VIAs in leverage with academic institutions and other medical research charities, including the National Institute for Health and Research, Engineering and Physical Sciences Research Council, the Human Tissue Authority, Biotech and Pharma.

For every £1 we’ve spent, we’ve leveraged £3 of external funding – that’s over £10 million leveraged!

3. Horizon scanning

What we said we'd do

Establish research sandpits to stimulate new thinking and innovation.

What we did

Held two research sandpits. The gastro-intestinal sandpit held in early 2016 generated two funded SRCs tackling this in 2017, one investigating the balance of bacteria in the gut and one exploring how to prevent blockages in the gut.

4. Transparency and accuracy

What we said we'd do

Ensure that we ask the best people for strategic advice and make sure that the governance of research awards is transparent and correct.

What we did

Established the Strategic Implementation Board. This board consists of expert CF scientists, clinicians and lay people with a vested interests in cystic fibrosis. This board is responsible for “peer-review” of our SRCs – they help us choose which are the ones we should fund. They also help us make sure that our processes are working as well as possible.

The Strategy Advisory Board was also established. This is a wide mix of people from all over the world with the best expertise in CF, and includes clinicians, scientists, people from industry and lay people who either have CF or are carers. The purpose of this board is to oversee at a very high level whether the Trust’s research strategy is moving in the right direction.

5. Involving the community

What we said we'd do

Establish new ways of engaging people with CF and their families in research.

What we did

Launched CF’s Got Talent, where we have invited early-career researchers working on projects funded by the Trust to present their research to our online audience at the UK Cystic Fibrosis Conference, which is in its second year.

Established a James Lind Alliance Priority Setting Partnership (JLA PSP) with £15,000 of funding from our VIAs. The JLA PSP investigated the research priorities of everyone in our community, from people with CF and their families to clinicians and specialists.

6. Supporting clinical trials

What we said we'd do

Support clinical trials.

What we did

Set up our Clinical Trials Accelerator Platform, a UK-wide initiative to bring together cystic fibrosis centres to increase participation and improve access to CF clinical trials. We are now building a network of CF centres that will collectively lead in the delivery of high-impact clinical trials.

What's next?

Now it’s time to refresh our strategy, to take us through to 2023, and again I am asking for your thoughts.

The first step is to look back at the last five years and ask:

  • Did we do what we said we would do?
  • How well did we address the issues you raised before the 2013 strategy?
  • What has worked, what hasn’t worked? What can we do better?
  • Is all or part of the 2013 strategy still relevant? Or do we start with a blank sheet of paper as we did in 2013?

What has changed over the last five years that we need to include in the new strategy?

Looking to the future

We also need to look into the future and try to anticipate what issues will be important to people affected by CF in 2023. Our ‘crystal ball’ is a bit foggy so if anyone has an idea of what the future looks like, please let me know!

These are extraordinary times for CF, with numerous new drugs in the pipeline that have the potential to transform the condition. We have to ask: “If they are all successful, what then?” This is important as it takes a long time for research to deliver tangible outcomes. There is no point funding research in 2018 that is then obsolete.

No strategy sits in isolation, so to future-proof the strategy and to maximise its impact, we need to be aware of everything happening in the UK, within the NHS and across the world. These subjects often hit the headlines and we need to have answers. Things like: “How can we do clinical trials more effectively? What is Big Data? Is stem cell research relevant to cystic fibrosis?”

When setting a strategy there are four keys questions:  Why? What? How? and When? 

The 'how' is probably the most important

To ensure that any strategy is future-proofed, we need to define the guiding principles, because then we can adapt how we respond to changing circumstances. So, I am asking for these general principles rather than specific areas.

Share your views now!

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