Breathing Life into Research: Insights from our Patient Representative, Irene, on EU PAL-COPD

Earlier this month, we spoke with Irene, a patient representative in EU PAL COPD and a member of the European Lung Foundation COPD Patient Advisory Board. She told us about how she became involved in the project and why it is important to her.

Could you please tell us a little bit about yourself?

My name is Irene, I’m 77 years old and I come from the East of England. I have a master’s degree in social research methodology. I worked as a Service Manager in social work in childcare and child protection. When I retired, I worked in the research arm of our NHS as a patient reviewer of health research for 15 years. In the early days this was difficult as there was a reluctance for patients to be involved but now this has been resolved and for the most part patients’ views are seen as integral to research.

How did you get involved with the EU COPD PAL project?

I personally knew a researcher from Lancaster University in the UK, who is involved in the EU PAL COPD project. 18 months ago, when I found out about my condition, she invited me to join the project as a patient to help bring the patient voice to research.

How have you engaged in the project so far?

It feels like the project is in its early stages, so at first, we are just sharing our experiences about COPD. So far, we have attended 2 meetings with researchers where we could say what was important to us as COPD patients. I felt that our opinion mattered a lot, because in the early days of my career as a patient engagement specialist I learned to see when patients are not taken seriously. This is not the case here.

Why are you interested in this project? 

Firstly, I am a patient myself. Secondly, as the project has a global reach, I was interested to learn about the many similarities in different European countries, although not all the services are the same. The project can help us learn from each other’s experience and improve palliative care for COPD patients from different countries.

The project is about quite a sensitive topic – how do you personally feel about participating in it? 

I think that as a patient in this project you have to be dispassionate because it is not about you and it’s not about answering questions about your health. It is more about the experience you can share with the research to help patients with similar conditions.

Was there anything challenging/difficult about participating in the project?

I would say that it is difficult for me to hear the stories of people who are struggling. It’s also upsetting when I know that someone’s condition is close to mine – but I try to separate myself from it.

There were many different people from all over Europe at the meetings – how was it?

I am interested to hear about their experiences. It’s nice to find similarities in different contexts. Patients suffer from the same problems with medicines in different healthcare systems. For example, now I can compare our healthcare system, which I consider to be somewhat paternalistic, with the Belgian one, which I have heard is more liberal.

What do you hope happens in the future as a result of this project?

As we look at palliative care for COPD patients, I hope that we can integrate it as part of COPD treatment for those patients who need it. I hope this project will help them make the right choice if they want palliative care. There is so much uncertainty for people with this disease, but making an informed decision about their treatment is something that every patient should have the right to do. I haven’t made a decision yet myself, but I hope that participating in this project will also help me decide what is best for me.

Why it is important that patients are involved in projects like this? What do patients bring to research?

I believe that patients have a say and have a unique perspective based on the experiences we have every day. When we represent different countries, we can share best practices in treatment to contribute to the idea of the most appropriate form of care.

Is there anything you would like to add?

For me, in general, participating in the project is very exciting because I like to see other patients, it’s interesting to hear stories about how similar we are in what we are going through. I especially like working with the researchers. I have a friend in the research team who I respect and trust, and I can talk freely about my condition and how I feel.

If you are interested in joining the ELF COPD PAG and getting involved in research projects like EU PAL COPD and others, please get in touch with us: https://europeanlung.org/en/contact-us/

Prepared by the EU PAL-COPD partners, Lungs Europe.