"The greatest gift you can give me...", an open letter from an asthma patient

"The greatest gift you can give me...", an open letter from an asthma patient

By Laura Bond, member of the Advisory Patient Forum for the MyAirCoach Project

I am an asthma patient, or more accurately, an asthma sufferer really fed up of going to the doctors or the hospital because of my asthma. I’d much rather be on holiday, seeing friends and family; even just not worrying about whether I’ve remembered my inhaler or not would be brilliant!

That’s why I decided to join MyAirCoach project as a volunteer patient advisor.

I’m just a regular person with a family, a job and hopes for the future and I dream of the day that asthma will not influence my daily activities. This project can help me achieve that. MyAirCoach has the potential to transform my life and that of the 30 million people living in Europe with asthma like me.

This project is very exciting because it is based on the promise that by putting our knowledge around health, new technologies and patients’ views together, we can create a tool that responds to patient needs and can control asthma easily with a personalized system.

MyAirCoach plans to understand how asthma and the environment I live in affects me, through miniaturized sensors that will be attached to my inhaler and will be connected with my smartphone. These sensors will capture information that will then be combined with my medical records so that I can receive personalized advice on how to self-manage my asthma. This means that I will not have to go to the doctors or hospital as much and have more spare time for the things I want to do. Sounds perfect!

But there are some things that I’m worried about. For example, will I need to give consent to the doctors and technicians using my medical records or have MyAirCoach engineers assumed that I’ll say yes? What will the final device look like? Will it interfere with my life at all?

The input of patients like me to projects like MyAirCoach can make a big difference to how the findings of the project are used and adopted by the patient community. If the final device is too hard to use, too heavy, too inconvenient or too ugly then honestly, I probably won’t use it. This is the main reason why, together with the other 19 patients, I am part of the Advisory Patient Forum within the project. A group that guides MyAirCoach  partners to find the best approach to respond to patients’ needs.

As a patient, I will help with the usability of MyAirCoach Personal Guidance System and it would be fantastic if I were able to input throughout the design, build and testing stages. We, the patients, have the greatest understanding of the disease and its effects, so I will for sure be able to contribute to the ethical questions that arise from data sharing and the way in which the system gives me potentially bad news.

The scientists, clinicians and engineers on this project are amazing and I know that, together, we can make this happen. So, whilst I’m eagerly awaiting the time when myAirCoach could transform my life, the greatest gift the project can give me is something that I really want to use.

Laura Bond