By Cat Ball, Head of Policy, AMRC

Published: 19 February 2020

Here at AMRC we’re passionate advocates for the medical research charity sector. Give us some pom-poms and a football field and we’d practically be cheerleaders.

But does everyone else in the UK’s life sciences sector understand our member charities the way we do? Where are the gaps? And what do we know that they don’t?

Last year we set out to answer these questions. We worked with the business advisory firm Deloitte to put together a roadmap that will guide us, and our members, in telling the sector’s full story.

Now, more than ever, it’s important that this story is told. The UK’s research landscape has been in flux and there are further significant changes ahead with the future UK-EU relationship yet to be determined, new government investment in R&D on the cards and new trading relationships being brokered. These changes have the potential to provide opportunities for charities and it’s vital that those driving them are aware of what can be harnessed by working with AMRC’s members.

Exploration kicked off by working with a group of our members to identify the full range of assets that medical research charities bring to the UK life sciences. It was established that charity contributions can be broadly grouped into three categories: funding including projects, people and infrastructure; assets including strategic patient insights, data access & scientific expertise and convening power; and outputs including economic value, patient value and products.

The full range of assets that medical research charities bring to UK life sciences:

With these assets and key contributions in hand, the next step was to understand how well they are recognised and understood by key players across the life sciences sector including industry, government, academia and public bodies. A series of stakeholder interviews were undertaken and their feedback collated.

There were two areas where there was found to be a strong understanding of charity contributions. As could perhaps be predicted, these were research funding – particularly with a focus on the cause of disease – and investment in people and skills.

Areas where charity impact is partly, but not fully, understood included: the relationships charities have with patients and their strategic patient insights; how charities act as facilitators and collaboration brokers; and the charity role in the development of new medical products.

The areas where the contributions of charities were found to be poorly understood included: investment in partnerships and collaborations; data access and scientific expertise; driving economic value; and the ability to have a multiplier effect – e.g. by investing in ‘riskier’ research.

Red, amber, green: how well understood are the sector’s contributions?

While it’s positive that there is strong awareness of the sector’s headline contributions in providing research funding and developing the pool of talent and skills, there is clearly work to do to make sure that the full breath of charity assets are recognised and understood.

Furthermore, there wasn’t an even level of awareness across all stakeholders – some had better understanding than others. Academia and government were amongst the stakeholders who best knew the sector while NHS representatives displayed an average understanding. Industry partners across pharma, medtech and digital health were found to have poorer understanding. This pattern could reflects the history of the way charities have worked. Relationships with academia are firmly cemented and often based on long-term partnerships but collaborations with industry are still fairly new and can face barriers and challenges.   

The spectrum of stakeholder understanding: Who knows us best?

So, what do we do with this understanding of how the sector is perceived? The roadmap puts forward a series of short-, medium- and long-term actions for AMRC and our members to help us to switch up the current narrative and share the sector’s full story. Short-term recommendations include:

• Identify and narrate the extent and breadth of AMRC member data assets
• Providing case study narratives on AMRC members’ contributions to the life sciences ecosystem; and
• Determining international charity sector comparisons to articulate the key contributions that AMRC members make to the UK’s global offer.

We’ll be working to take these actions forward over the next year as we seek to share the sector’s full story in a changing research landscape.

But, for now, pass me the pom-poms…