The power of patient involvement in research

A recent study published in Health Expectations looked at the lived experiences of people with Idiopathic Pulmonary Fibrosis (IPF) in the UK. The study highlights the profound impact IPF has on daily life and the influence people can have if they are involved in research. Although this study focused on IPF, we frequently hear about the same challenges for people living with other forms of Pulmonary Fibrosis.

The study revealed that many patients with IPF are being excluded from research processes which could lead to new treatments. Researchers found that when designing research studies, the way patient thoughts and experiences are collected, often overlooks how varied and diverse experiences can be. It highlights how clinical trials tend to engage people with a certain type of PF who are already connected to pharmaceutical companies from previous insight gathering opportunities, therefore leaving other people out of the conversation.

Patient interviews have revealed that participation in clinical trials can be difficult and confusing, and that few people have a say in how the studies are designed. The research also warns that the standard tools which are used, along with commercial priorities, may not voice patient concerns that fall outside of typical corporate agendas.

A call for change: Co-designed research and true collaboration

Current methods for gathering patient input needs major improvement and the study is calling for a new approach.  It is urging a shift toward a more inclusive, co-designed research practice and better patient involvement to ensure underrepresented voices are included. Involving people with PF at every stage, from shaping research questions to designing studies, ensures that new treatments are informed by real life experiences, not just clinical measurements.

However, many people affected by PF say they are uncertain about how to get involved with research and feel their voices are less valid than those of healthcare professionals. We know this must change, and this is why we are taking action.

Amplifying the patient voice: Our role as a charity

Action for Pulmonary Fibrosis (APF) believe that the people living with PF are experts by experience. That’s why we’re committed to Patient and Public Involvement and Engagement (PPIE) in all aspects of research. It’s not just about participating in studies—it’s about shaping them from the start.

Here’s how we support this:

• ‍Connecting researchers and patients: APF bridges the gap between the scientific community and people affected with PF. We help to ensure that research addresses real-life concerns and is designed in a way that is suitable for people to take part without a significant burden. ‍
• Providing expert insight and resources: We offer guidance to researchers and the PF community to establish meaningful collaborations, where everyone can benefit from sharing insight into the disease.‍
• Facilitating involvement activities: Our Involvement Network is a diverse community of people with lived experience of PF from different backgrounds, who actively contribute to shaping research, services and communication. We ensure that everyone has a voice and a seat at the table.

Ways to get involved: Your voice matters

There are various ways to get involved and provide insight including:

• ‍Joining our Involvement Network: Get monthly updates with opportunities to take part in focus groups, surveys, research projects, and more. Your insights help shape future research, services, and communication.‍
• Joining an advisory group: Help guide our work in key areas like patient information and communications.

You can choose how much or how little to get involved - it’s flexible and designed around your needs and availability. Email involvement@actionpf.org for more information.

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We are helping to improve access to information about research and the opportunities to get involved or take part in studies. You can use our Study Finder to see all the research opportunities available.  

Why your voice matters

When people affected by PF are involved in research, it becomes more focused, support becomes more effective, and the healthcare system becomes more compassionate. This recent study shows that living with PF is about more than lungs - it’s about dignity, identity, and quality of life.

By sharing your experience, you’re not only helping yourself, you are helping to shape a better future for everyone affected by PF.

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