Interview with Ana Luisa Araujo Oliveira

You won the ERS/ELF Travel Grant to the ERS Congress for the Best Abstract in Patient Centered Research. Why do you feel it is important to include patients in your research?

The ultimate goal of our project at the West Park Healthcare Centre (Toronto, Canada) is to develop an innovative rehabilitation service for people after hospitalization for a flare-up of their COPD. We have known for years that beginning rehabilitation after an exacerbation of COPD is key to reducing further hospitalizations and improving a patient’s exercise tolerance and quality of life. We know that many patients do not stick to this treatment for several reasons. One of them is that they feel too unwell to take part in rehabilitation. This is a great example of how having an effective intervention is pointless if patients are not able to continue with the program.

For us, it was crucial to have patients’ opinions on how they think a rehabilitation program could be adjusted to their needs and preferences after an exacerbation, as well as from healthcare professionals and policymakers to make sure these adaptations would still result in an effective and feasible intervention.

What was the biggest impact that involving patients had?

Patients have been involved since the start of the research idea, all the way to the implementation and then interpretation of the results. They have contributed to developing our research question (through a focus group where they rated their research priorities in COPD). They worked with us to select and adjust the methods used to answer the research question. I think one of the most important contributions we had from them was on how we should word and structure our interview questionnaire (e.g., including questions about previous experiences with hospitalizations) and Delphi study (e.g., including figures) to be suitable for patients.

Do you have any advice for researchers about how to better work with patients?

1. Ask for their opinion: they know and understand much more than researchers may think.
2. Have an open mind when listening to their answers. Patients are not researchers, so we will not be talking the same language when it comes up to formulating research ideas and methodologies. It does not mean their suggestions are not valid – sometimes they just need to be “translated” into research terms.
3. Work with them to put their suggestions into operation. This requires time and commitment from both sides, and it may take several goes until we have captured in science what they are telling us with words.

And any advice for patients about being involved in research?

Be patient with us…we have a very evidence-based oriented mind and sometimes it may be difficult for us to focus on the more day-to-day implications of our research. You may need to remind us many times on how to make things more relevant and meaningful to you.

…but make sure you are heard! Although we may be the science specialists, you are the most experienced person living with your condition. We can have the most effective treatment in the world, but if you feel you would not be able to take it for any reason, it is pointless. The smallest thing you have to say to us is valuable and may change the course of care in the long term. The research of today is the treatment of tomorrow. So, if you want to have treatments that are meaningful and suitable for you, you have to be involved from the beginning!

What would be your advice to other researchers who may be interested in winning the ERS/ELF Travel Grant for Best Abstract in Patient Centered Research next year?

First of all, apply! I know some people that refrain from applying because they think there is always someone doing better than them. Trust your projects and yourself.

Second, involve patients in your research from the beginning. Match your research interests with their priorities and ask for inputs along the way. Only by doing this, we will guarantee that we end up with a meaningful and translatable product for our main group of interest and that our project does not only finish with a paper publication.

We need your opinion! If you have COPD, have had a hospitalization for a flare of your condition in the past year and want to be involved in contributing to the development of a rapid access rehabilitation program for people after a hospitalization for a flare-up of COPD, please contact Ana at ana.oliveira@westpark.org