Making a difference: Impact Report 2019

Medical research charities are committed to funding research that positively impacts people living with health conditions or diseases. For many charities, this is only made possible through public donations and so charities must let the public know how their money is being spent and what impact it is having.

The pathway to impact is rarely linear. Instead, it often involves many different funders and research teams over a long period of time. This cumulative nature of impact makes it challenging to track in an effective way.

AMRC is helping a number of our members use an online tool called Researchfish that allows them to collect data on the outcomes of their research funding over time. Collecting data in this consistent way allows us to pool data together from many different charities and perform an in-depth cross-sector analysis of the outcomes of the research funded by our members.

This report follows on from our initial 2017 impact report, incorporating two more years of data and new stories of how charity-funded research has impacted patients and society. The report is structured around the five areas of impact shown below.

For a PDF version of this report please contact our Communications Officer, Leo.

If you have any questions please contact our Research, Data and Impact Manager, Jocelyn.

With thanks to the Medical Research Council, Researchfish, and participating charities.


For research to make a difference, the findings need to be shared with a wider audience in order to inform the public, stimulate new ways of working and influence policy. For many charities, supporting researchers who are willing to engage with policy makers is vital to ensure that the findings generated by research are acted upon. Influencing can be split into two aspects:

   Key stats

  • 13% of the awards led to 1,880 unique influences on policy and practice
  • 49% of the awards led to 15,732 unique engagement activities

Influence on policy and practice

Policy influences include citations in clinical guidelines or other policy documents, the provision of expert advice to government committees or influence on the training of health professionals.

13% of awards generated 1,880 unique policy and practice influences.

There was a wide variety of different ways to influence policy and practice:

  • 1,011 (54%) examples of researchers providing expert advice to government
  • 518 (28%) examples of influence on the training of health professionals or other researchers
  • 351 (19%) citations in policy documents, including clinical guidelines, clinical reviews, systematic reviews and other policy documents

Engagement activities

Researchers play a key role in explaining the importance of research to wider audiences. The area of engagement has been one where researchers have been active for the last decade, and it is the category with the second highest number of outputs (after publications) linked to charity-funded research.

49% of awards generated 15,732 unique engagement activities.

Types of engagement activities:

  • The majority (76%) were talks or participation in workshops or open days.
  • The next most common types were press releases/conferences/responses to media enquiry/interview (7%) and formal working groups or expert panels (7%).


Case study: Fast track surgery for pancreatic cancer  

Research evidence led the APPG on Pancreatic Research to recommend fast track surgery programmes across the NHS to improve survival rates.  

Pancreatic cancer is the deadliest common cancer. It is often diagnosed late and progresses quickly, meaning that 1 in 4 people die within a month of diagnosis and 3 in 4 people do not survive a year. In 2012, parliamentarians came together with key stakeholders to form the All Party Parliamentary Group (APPG) on Pancreatic Cancer. The APPG has run 3 major enquiries and published several influential reports that aim to improve survival rates and quality of life for people with pancreatic cancer by influencing relevant policies. 

Pancreatic cancer patients often present initially with jaundice and this is usually treated with a stent whilst the patient waits 6-8 weeks for surgical removal of the cancer. This long wait period sometimes means that the condition will progress to the point of no longer being operable. In 2016 Pancreatic Cancer UK funded a team in Birmingham to run a pilot programme to fast track patients into surgery, bypassing the need for a stent. The programme improved patient care, experience and outcomes. People received potentially curative surgery within 16 days instead of 62 daysand 20% more people had the opportunity to have surgery because their cancer hadn’t become inoperableThe fast track process reduced complications, unnecessary treatments and readmissions, ultimately saving the NHS an average of £3,000 per patient. 

The researchers presented their evidence directly to the APPG as part of the most recent enquiry and it forms the basis of one of the 2017 report’s key recommendations  that the Government and NHS England must consider developing national guidance supporting fast track surgery and faster access to treatments. In 2018 NICE published the first ever guidelines for pancreatic cancer, something that the APPG had been pushing for since 2013. The guidelines cite the groups work and include the recommendation that where appropriate people should receive surgery immediately rather than having a stent first. The compelling evidence from the pilot study in Birmingham and similar work by researchers in Manchester now forms the basis of the demand faster treatment” campaign recently launched by Pancreatic Research UK that calls for all treatment for all people diagnosed with Pancreatic Cancer within 20 days.   

Case study: Raising awareness about rare forms of dementia 

A research team at UCL supported in part by Alzheimer’s Research UK has engaged with the public and health practitioners in multiple ways to spread awareness and facilitate early diagnosis of a rare form of dementia.  

Posterior cortical atrophy (PCA) is a rare form of dementia that initially affects vision and often manifests earlier in life than other types of dementia. Over the past six years, Alzheimer’s Research UK has funded a team at the UCL Institute of Neurology to investigate the causes of PCA. In addition to advancing knowledge about the condition, the researchers have actively engaged with the public and practitioners to raise awareness about PCA and dementia in a variety of innovative ways. 

To educate people affected by or interested in dementia about key issues in care and research, one of the researchers launched a free online course called “The many faces of dementia” in 2016Thousands of people worldwide have benefitted from this course by learning from world-leading experts from UCL and hearing directly from people affected by four less common forms of dementia. 

To enrich public and professional understanding of dementia further, one of the researchers was invited to direct a transdisciplinary centre called “Created Out of Mind” at The Hub in the Wellcome Collection from 2016 to 2018. This unique project brought together artists, scientists, healthcare professionals, people living with or affected by dementia and the public in a space where they could all explore, challenge and shape perceptions and understanding of dementias through science and the creative arts. One of the outputs of this project was an animated film called “Do I see what you see?” that features the voices and experiences of people living with PCA. 

As the first symptom of PCA is visual impairment, the research group has also engaged directly with optometrists to raise awareness and facilitate early diagnosis of the condition. The researchers have been able to influence and educate practitioners through publications in scientific and professional journals and presentations at optometry conferences and training events. A formal collaboration with the College of Optometrists was also initiated in 2015 in order to facilitate and expedite translation of the UCL research team’s findings in the lab into changes in training, policy and practice. 

NEXT: Stimulating further research via new funding or partnerships