Dr Ana Luisa Araujo Oliveira won the ERS/ELF grant for the best abstract in patient centred research for her abstract: Rapid access rehabilitation after exacerbations of COPD.
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.
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.
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!
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 firstname.lastname@example.org
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