How we work with patients and communities

People with lung conditions helped define priorities for a Target Product Profile (TPP) to guide the creation of simple lung tests that can speed up diagnosis of chronic and rare respiratory conditions – such as asthma bronchiectasis, COPD and interstitial lung disease – in primary care. 

They shared their diagnostic journeys to highlight what’s most needed in future tests. Insights were gathered from patients, clinicians and healthcare professionals via workshops, surveys and focus groups hosted by LifeArc and Asthma + Lung UK. 

The TPP will outline the minimum and desired features for new diagnostic tools. Upon its completion in November 2025, the TPP will be shared with test developers to help produce faster and more accessible diagnostic tests. 

Input from people with lived experience will help ensure that new tests meet real-world patient needs.  

People with cystic fibrosis and their families helped shape the vision for research hubs within a national network looking to improve how lung infections are managed. 

They shared the biggest challenges in infection diagnosis, treatment and daily care. Their experiences and input were considered when setting up the individual hubs in the network. 

These insights also directly influence the scope and focus of funding proposals and chosen projects, and people with cystic fibrosis and their families continue to sit on steering and review groups.  

With patient voices involved at every stage, the network will keep its focus on tackling the challenges that matter most to those living with cystic fibrosis.  

People with lived experience of MND sit on our MND Insights Group to identify urgent priorities and guide research, programmes and funding decisions. 

To date, the group has helped to deliver 8 workshops and 2 community surveys. These activities gathered insights on a wide range of topics about living with MND.  

So far, findings have been shared in 2 ‘MND insights reports’. One explores views on treatments, while the other focuses on medical devices and daily living aids.  

These perspectives are now being used to inform funding calls, programmes and research design, ensuring scientific progress reflects what truly matters to people with MND and their families.  

The MND Insights Group shaped a LifeArc-funded, £5 million drug repurposing funding programme for MND.  

The group reviewed proposals and shared perspectives on treatment priorities, drug tolerances, feasibility, accessibility and real-world needs. 

The set up of the funding call also reflected LifeArc’s patient focus. Applicants were asked to outline clear ‘path to patient’ plans, showing how their research would translate from the lab into the clinic. They also provided lay summaries as part of their submissions. 

Involving patients in programmes like this can speed up and prioritise projects that will create effective, tolerable treatments for everyone affected by MND.

C-Further is advancing new therapies for children and young people with cancer. 

A patient advisory panel provides insights and perspectives to the consortium on strategy, prioritisation, policy and communications.  

Patient representatives are also involved in reviewing funding applications to the consortium, helping ensure the research funded meets the needs and wants of people affected by children’s and young people’s cancers.  

In addition, the consortium works with established patient groups and panels in other organisations to get input from the wider community. 

By involving people with lived experience in drug discovery and development efforts, we can ensure research is focused on meaningful patient impact from the earliest stages.

A patient and public advisory group helped to review, shortlist, and select top-ranking antimicrobial resistance research projects for PACE, to build a portfolio that is scientifically strong but meets real-world needs.

This report captures the insights and ideas from a collaborative workshop involving researchers, funders and people with lived experience. It outlines 10 practical actions that can help organisations advance meaningful involvement in translational research.  

These include developing best practice guidance, improving communication about translational science, and creating training opportunities for both researchers and people with lived experience. 

The workshop was a joint effort between us, the Charities Research Involvement Group (CRIG), and the TAR Network. Attendees shared real-world examples of how patient and public involvement has improved research outcomes. 

Our next step is to form a working group to take forward these priorities and support a more inclusive, impactful approach to translational research.