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.


One of the most immediate outcomes of a piece of research is the generation of new knowledge and resources to support further research. This can be split into three aspects:

   Key stats

  • 72% of the awards generated 43,601 unique publications
  • 20% of the awards generated 2,172 unique tools and methods
  • 9% of the awards generated 788 unique databases and models


Publications allow new knowledge to be widely shared amongst the research community, helping to progress and move it in new directions.

72% of awards generated 43,601 unique publications. The majority of these were journal articles, but also included other types of publications like books and abstracts.

Other includes: thesis, book edited, policy briefing report, systematic review, working paper, manual/guide, technical report, consultancy report and other.

Research Tools and Methods

For science to progress, new tools and methods need to be developed and shared with the research community. These outputs allow other researchers to further develop or use the validated tool in their own research, moving the field forward.

20% of awards generated 2,172 unique research tools and methods.

Types of research tool or method generated:

  • The most common type (27%) was a technology assay or reagent used for the analysis of a molecule.
  • This was closely followed by models of mechanisms or symptoms in mammals (19%).

Other includes: other models, antibodies, biological samples, outcome measures, and data analysis techniques, among others.

Research databases and models

Medical research generates large amounts of information and researchers can use this to create new models to help understand diseases.

594 awards (9%) generated 788 unique research databases and models.

Types of database or model:

  • The majority (81%) were either databases or a collection of data
  • Almost half (48%) of databases/collections of data were made available to other research groups

Case study: Personalised treatment of childhood arthritis 

Sparks logo

Biomarker test introduced into clinical practice to predict responsiveness to drugs and allow for personalised treatment of childhood arthritis 

Juvenile idiopathic arthritis (JIA) is a condition that affects 1 in 1,000 children in the UK. JIA is defined as inflammation in one or more joints before a child turns 16 and is caused by the immune system attacking the body’s own tissues. There is a spectrum of severity, ranging from arthritis in a single joint to a severe form that affects the entire body and has multiple complications including uveitis, an eye condition that can cause blindness. There are a range of drugs available to treat JIA but children don’t always respond well or have debilitating side effects. 

Since 2005 Sparks and Great Ormond Street Hospital Children's Charity have supported a project called CHARMS (the Childhood Arthritis Response to Medication Study) with the goal of identifying genetic, cellular or molecular ‘biomarkers’ to predict the response of a child to medications, ultimately allowing for a personalised approach to treating JIA. This national project turned international and ultimately recruited more than 800 children into the genetic studyDuring the project the team developed simple blood test that allowdoctors to predict which children will respond well to one of the drugs currently used to treat JIA. The test was piloted in a research cohort of 190 children and was then successfully introduced into routine clinical practice at Great Ormond Street Hospital in 2016.  

Carrying this important work forward, in 2018 the team behind CHARMS were awarded £5 million of follow-on funding from the Medical Research Council and Arthritis Research UK (now Versus Arthritis) for a new stratified medicine project called CLUSTERwhich will follow 5,000 children with JIA and uveitis. The project aims to create new ways of identifying the right treatment for each individual patient as early as possible, ensuring symptoms are effectively managed and that the condition doesn’t progress into lifelong disability. 

Case study: Person-centred care for progressive conditions 

Marie Curie logo

An intervention called SNAP has been developed to help people with progressive incurable conditions identify and communicate their support needto healthcare professionals 

Chronic Obstructive Pulmonary Disease (COPD) is a progressive respiratory condition that requires significant care at the end of life with a high cost to the NHSmaking it important to improve support for patientsPerson-centred care is considered the best way to ensure people’s needs are identified and met, but in practice this has been shown to be challenging.  

In order to overcome barriers to implementing this type of care, the NIHR School for Primary Care Research invested in the development of an intervention called SNAP (Support Needs Approach for Patients)SNAP consists of a copyrighted tool comprising 15 evidence-based questions to help patients identify areas they might need support in, like help managing symptoms or access to financial benefits, and a needs-led conversation with healthcare professional informed by their completed SNAP tool 

SNAP is a direct response to one of the six key recommendations of the Living with Breathlessness Study, which was co-funded by a previous Marie Curie research grant and a NIHR Career Development Fellowship. Led by Dr Morag Farquhar at the University of East Anglia, and Carole Gardener and Dr Gail Ewing at the University of Cambridge, Marie Curie funded the second phase of this programme to validate the tool, improve its design and content, develop an accompanying training and support package for the SNAP intervention, and bring SNAP into clinical practice.  

SNAP has now been used in a range of clinical settings including primary, community and secondary care, and there have been requests to translate the tool into multiple languages. The Taskforce for Lung Health, led by the British Lung Foundation, specifically suggested SNAP as an intervention to identify and address unmet support needs of patients in their five year plan for lung health. It has been similarly recommended in the RCGP and Marie Curie Daffodil Standards. Going forward, SNAP has the potential to be applied to other progressive incurable conditions such as heart failure, neurological conditions and cancer. 

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