Annette and Rita talk about their experiences as patient advisory group members
Patient advisory groups (PAGs) help others living with lung diseases, often by advising doctors and researchers. ELF runs PAGs for lots of different lung diseases, and each one is slightly different. In this interview, PAG members Annette and Rita share their experiences.
Can you tell us a little bit about yourself and your experience with a lung condition?
Rita: I am Rita, I was only diagnosed with sarcoidosis 7 years ago, but have had the disease since I was a child. After I got diagnosed, I researched sarcoidosis online and found ANES (the Spanish National Sarcoidosis Patients Association). I got a lot of information about my condition from them, and a lot of support too. Through ANES I got to know about ERS and ELF.
Annette: My name is Annette, I am 48 years old and live in the Netherlands. I was diagnosed with bronchiectasis as a child, although doctors were not always sure about the diagnosis at that time –which is quite common in bronchiectasis patients.
How did you first get involved in the PAG?
Annette: I have been involved in the Bronchiectasis PAG since 2015. I was always interested in research projects and gaining more knowledge about bronchiectasis, so my doctor asked me if I was interested in joining a new PAG for bronchiectasis. I decided I wanted to join mainly to help increase knowledge and awareness of this disease.
Rita: I joined the Sarcoidosis PAG last year. Before that I had attended the ERS congress for the first time in Milan, 2017. I got involved in writing a letter about some ELF survey results on treatment priorities for patients with sarcoidosis. In 2018 I attended the ERS congress in Paris, and Jeanette Boyd from ELF asked if I would like to join the Sarcoidosis PAG.
Can you tell us a bit about the PAG you are involved in?
Rita: The Sarcoidosis PAG includes representatives from many Sarcoidosis Patient Organisations across Europe. We work on website and factsheets (information for people with sarcoidosis), patient passport (a check list of things that a patient can expect from a doctor), guideline statements (helping the ERS develop guidelines for healthcare professionals), and a new survey we are hoping to develop.
Our PAG keeps in touch by email or by video conference. We have a lot of help from Jeanette from ELF, particularly with administration and summarizing all the information that we bring to the group. I keep ANES up to date with PAG activities as well as updating the PAG with what is going on at ANES.
Annette: In the Bronchiectasis PAG we have patients from different countries such as the UK, Germany, Spain, the Netherlands and Norway. There is a good mix of ages, genders and backgrounds.
I attend and participate in meetings at congresses, which happen once (sometimes twice) a year and usually last for two days. During the ERS congress there is always a meeting scheduled with patients, the project manager of ELF and experts such as pulmonologists and researchers.
Other projects we work on are input and review of the ERS guidelines for the management of adult bronchiectasis, participation at ERS and ELF congresses (discussions, presentations etc.), development bronchiectasis website for ELF and development of a Patient Passport. These activities are spread over the year and don't take too much of my time – the great thing about being part of a PAG is that you decide how much work you do.
What are some of your highlights or favorite experiences from being part of this group?
Annette: I enjoy attending congresses, especially the meetings during them. It gives me the opportunity to see and speak to other patients in the group as well as ELF staff and medical experts – we can all share experiences and gain more knowledge.
Rita: It’s very nice to know that I am helping people find the right information, because getting diagnosed with a rare condition that you have maybe never heard of before is a very difficult time. Attending congresses and building relationships with people from other countries, other organisations and ELF is also enriching and very rewarding.
What is your advice for people who are thinking about joining a PAG?
Rita: Don’t hesitate – it’s really worth it! It might seem like hard work, but it is very rewarding and a great experience getting to know different organisations and people from all over the world. Above all, it is great to feel useful and know that you are helping other people.
Annette: I would definitely recommend it! You will never be closer to the most recent knowledge. You can share your experiences and most importantly you can give your input on what is important for patients!