By Heather Thorn, Patient Partnership Coordinator, Asthma + Lung UK

Published: 21 September 2023

AMRC’s Festival of Partnerships is shining a light on partnering – how best to do it, the challenges it brings, and showcasing great examples from the sector. A highlight of the Festival so far has been hearing from our member charities about the diversity of ways in which to partner: with each other, industry, government and more. We didn’t think it was fair to keep all these insights to ourselves. So, in this ‘Showcasing Partnerships’ blog series we’ll be hearing from some of our charities about these partnerships, their challenges and successes, as well as lessons learnt. 

In this week’s blog, we hear from Asthma + Lung UK’s Patient Partnership Coordinator, Heather Thorn. She told us about the charity’s partnership with LifeArc to establish the bronchiectasis research community.

Tell us a bit about your charity and the research it funds.

Asthma + Lung UK stands as the UK's leading lung charity fighting for your right to breathe. Our research initiatives span a range of life-saving endeavours from enhancing treatments for childhood pneumonia to pioneering innovative medications for those living with asthma, developing treatments to aid post-hospitalisation recovery, and even contributing to the battle against COVID-19. We leave no stone unturned when it comes to finding a treatment, cure or a better way to diagnose lung disease.

What is your role at your charity and what does a typical day look like for you?

I am the Patient Partnership Coordinator at Asthma + Lung UK and I work within the Research and Innovation team; the purpose of my role is to support people living with lung conditions get involved in research. My day varies depending on the task at hand but may include meeting with people with lung conditions to hear about their experiences and needs, meeting with clinicians and researchers to collaborate on research projects and planning different ways to hear from people with lived experience of health services. This includes people who are part of our newly formed bronchiectasis research community.

Tell us about a partnership your charity has been involved in.

Asthma + Lung UK have partnered with LifeArc on their Chronic Respiratory Infection Translational Challenge to establish the bronchiectasis research community; a group of people with lived experience of bronchiectasis who are interested in getting involved with bronchiectasis research.

Engagement with this community has so far taken shape through focus groups, presentations and surveys. We’re in the early stages of this partnership but it’s already proving incredibly beneficial! So far, we've learned more about what matters to people living with bronchiectasis in terms of new treatments and diagnosis of chronic infections. These valuable insights have been shared with LifeArc to guide their funding and research decisions, ultimately ensuring that peoples’ needs are at the heart of bronchiectasis research.

What were the main benefits of this partnership as opposed to doing the same project alone?

It’s great to be partnered with the medical research charity LifeArc. Improving the lives of patients is a core value we share and we both understand just how important a greater awareness of, and research into, bronchiectasis is! By partnering with LifeArc, we pool our expertise, networks and resources to advance bronchiectasis research and raise the profile of this historically underdiagnosed, misunderstood and overlooked respiratory condition. In doing so, we strive to bring real benefits to patients and researchers faster, whilst having a greater overall impact than we could working alone. 

What makes charities such good partners?

Charities are often trusted organisations for members of the public. We provide listening services, helplines, support, awareness raising and research; we work holistically and have the space and time to build relationships with our beneficiaries. As such, we can provide rich perspectives and experiences tied to our cause which helps us create robust solutions to the oftentimes complex challenges faced by society.

What are the main challenges you’ve faced in partnerships and how did you overcome them?

The main challenge in this partnership has been juggling the projects long-term goals with shorter term activities and recruitment – all involved want to get this brilliant work going, but we also need to build a strong foundation. It can at times be difficult to find the right balance, and we’ve overcome this challenge with open and honest communication. Being understanding of each other’s needs and communicating transparently has helped us build the necessary rapport and trust to work effectively together.

If you could give one tip to another charity entering a similar partnership, what would it be?

My one tip would be to take the time to understand your partners priorities, needs and ways of working. Charities often operate differently from one another and from funders, universities and companies developing new treatments or products. Added to this, people on the project might be new and/or coming from different backgrounds – for myself I was not only new to Asthma + Lung UK and to this partnership when I started my role in May 2023, but also to the charity sector. I’d recommend making personal connections with those involved (both internally and externally) so you can work effectively together. For me, that was introductory emails and video calls – they were an ideal stepping-stone to kickstart my role in this fantastic partnership.

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If your charity has a partnership you’d like to share via this blog series, we want to hear from you! Get in touch with Ellen at [email protected]. Read other blogs in the series on our Festival of Partnerships: blogs page.