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Getting the Most Out of Clinical Research

This month, AMRC and NIHR co-hosted an event - Getting the Most Out of Clinical Research - which aimed to instigate more collaborative working between charities and the NIHR; examine areas where the charity sector and NIHR can work together and identify issues that require further work.  The event had over 80 attendees, made up of AMRC member charities and NIHR staff, and included a great mix of presentations, breakout sessions and 1-2-1 partnering.

Following the event, the message was clear, charities and the NIHR want to talk more and share more to maximise impact. 

One of the best AMRC events I have attended. Many thanks for the invaluable opportunity to find out more about and to meet Department of Health and NIHR colleagues. Sabine Best, Marie Curie

Overview of the day…

The day was opened by AMRC’s CEO Aisling Burnand and was followed by an overview of why charities need the NIHR by AMRC’s head of research Dr Liz Philpots. Liz described some of the challenges faced by charities, and identified where existing NIHR infrastructure could provide support. In this way, translational gaps can be bridged a lot quicker, meaning that solutions to common concerns such as funding research that is relevant to patients and getting the right people to do research can be found more quickly and easily. 

This was followed by a keynote presentation by Dr Russell Hamilton CBE, Director of Research and Development, Department of Health discussing how collaborating in clinical research leads to improved patient benefit. The NIHR had been established to provide a step-change in how research was funded and delivered in the NHS. This had led to a number of partnerships with charities, but Dr Hamilton was keen to see a ‘gearing’ of partnerships to ensure that the ‘public good’ of infrastructure provided by NIHR could be used to maximum effect. 

Professor Dave Jones, NIHR Newcastle Biomedical Research Centre and NIHR Dean for Faculty Trainees then spoke about the NIHR research infrastructure and charities collaborating to maximise the impact of research. Professor Jones described his units ongoing collaboration with The PBC Foundation who provided context on living with the Primary Billiary Cirrhosis. This collaboration had led to a Priority Setting Partnership that articulated the need for an EME trial around fatigue. The collaboration provides ongoing support on study design and tool development, and is working on education material written by patients for doctors. 

Dr Matt Westmore, Director of Finance & Strategy, NIHR Evaluation, Trials and Studies Coordinating Centre concluded the plenary sessions with a look into NIHR funding programme and examples of how charities working with the NIHR lead to better value research. 

Parallel sessions…

Following the plenary sessions, attendees then split across four different parallel sessions to delve deeper into how charities and the NIHR can work together. All of parallel sessions provided examples of how charities are already working with the NIHR and suggested opportunities for new collaborations.

Working together across the early stages of research: right question; right design 

This session looked at how to ensure that research was answering the right question and was well designed. We heard that many charities are already involved in doing priority setting partnerships to get the ‘right question’, but few have been asking researchers to use NIHR resources like the Research Design Service or clinical trials units. Funders can play a role in signposting researchers to use these resources, or even in mandating their use as part of the application.

How does the NIHR support study set-up, delivery and dissemination

This breakout session aimed to demonstrate how the NIHR can provide assistance in clinical trials, from conception to fruition. In doing so, attendees were given an overview of how Clinical Research facilities and how the NIHR’s Study Support Service can be used to conduct and support a clinical trial. It also showed how NIHR’s Dissemination Centre is used to distribute the outcomes of trials to the people who benefit from them.  

How can charities engage with the NIHR infrastructure

This session looked at how charities can engage with the NIHR infrastructure. We heard from BRC on how it is a good time for charities to engage with them and help define the research questions; BRUS on how they can help charities maximise their investments and from a CLAHRCS perspective with a case study on how collaboration with the charity Diabetes UK led to a an academic project, a self-assessment score questionnaire on diabetes, to be rolled out and used. 

How charities and the NIHR can work together to translate basic findings into clinical benefit

This session looked at how charities can engage with the NIHR. The key things were to have a proof of concept, to know what is next in the research and what evidence is required. It’s important for charities to also share data and a portfolio with NIHR including a dissemination plan and multiple steps along the translation pathway including how the NIHR fits in. 

The breakout sessions allowed a more in-depth discussion about the infrastructure of NIHR and how charities can work with the NIHR. Madina Kara, Stroke Association. 

1-2-1 partnering session…

The last part of the day saw a 1-2-1 partnering session, in speed dating fashion, in which attendees had short one-to-one meetings. Through this, we aimed to kick start conversations to help build relationships and opportunities for collaborations.

Extremely useful, very focused conversations. Tracy Elliot, Arthritis Research UK 

A great opportunity to start long-term relationships. Nicola Herd, D4D

I made a lot of connections on the day, both with charities but also connections through the NIHR, I will certainly be following up those connections and hope to work more collaboratively in the future. Natalie Billington, NIHR Clinical Research Network. 

Attendees came together at the end of the day for a summing up session, in which chairs from all the parallel sessions recapped their key messages. 

Key themes that emerged were:

  • There are real opportunities to point researchers in the direction of existing NIHR resources like the Research Design Service or Clinical Trials Units
  • Charities can provide access to discrete patient populations
  • Dissemination of findings is key –and a joined-up approach will help the NHS take up research ideas
  • Start talking early – whether it’s about a potential collaboration, or a pilot study that may need next stage funding
  • The system is complex and signposting is needed – both for charities to find the right part of NIHR and for NIHR to find the right charity

Overall, they key message was that the AMRC and NOCRI are here to help charities and NIHR get the most out of clinical research.