Kjeld Hansen, a member of the Patient Ambassador Group, tells us about his experience of speaking at the ERS Presidential Summit in Rome and what he enjoys most about being a patient advocate.
Can you tell us a bit about yourself?
I currently live and work in Copenhagen in an IT management role. I enjoy running and mountain biking in my spare time. I’ve been an asthmatic since I was six years old and, for the last eight years, I have gradually become more and more involved patient empowerment activities. I’ve also been involved in a number of clinical trials to test new medications for severe asthma.
How did you become involved in patient empowerment/advocacy work?
In 2006, I joined a group of people taking part in the Asthmamarathon project. As part of this, we spent nine months training for the New York marathon and having our treatments tested and adjusted regularly to help us complete the project. Before this, I had become complacent and was used to asthma symptoms being a part of my life. The marathon fundamentally changed my opinion of what it meant to live with asthma and I developed a need to share and discuss this with others.
From this project, I was nominated to become an ELF Lung Champion for the World Spirometry Day campaign in 2012. After connecting with ELF through this campaign, I became aware of the European Patient Ambassador Programme (EPAP) and I took the course when it was initially launched. I then contributed to the PPI group which is currently evaluating EPAP.
Through all this work, I began to realise that there are a massive number of people who live with conditions and put up with symptoms when they don’t have to. There is a huge potential to engage people in healthcare and inform them about how to manage their condition and we can help with this aim as patient ambassadors.
What do you think are the benefits of being a patient advocate/ambassador?
My main motivation is to do something relevant and – more than anything – something useful. By discussing these issues and sharing my perspective, I hope I can make other people who live with my condition – or any condition – feel that they should engage themselves in shaping a new role for patients in collaboration with other stakeholders. I regularly discuss my experiences with interested and committed people, from healthcare professionals to patients or patient organisations, and this is very rewarding. For me, it seems right to pass on my own expertise if it has the potential to benefit others. After all, I too have benefitted from others’ commitment to the same cause in the past.
You recently spoke at the ERS Presidential Summit providing the patients’ perspective on clinical trials. How do you think patient participation can be strengthened in clinical trials?
The values of patient participation need to be articulated. This hasn’t always been done very clearly. As an IT professional, I work in the field of communications, and I believe it is essential that we learn to communicate better in this field and strengthen the dialogue between patients and scientists. It is beneficial to consider the personal perspective in a clinical trial and there has never been better opportunity to do so than now.
It is also important to consider how to make clinical trials relevant to everyday life. We are always meeting scientists in their settings but I think there could be advantages to considering patients’ life and living situation, when designing new clinical trials. This might make participation in a trial feel meaningful to patients, and also help scientist better understand patients’ perception.
What changes do you hope to see in the future regarding patient empowerment?
Patients are experts in their own condition and they understand what can make their symptoms better or worse. Their condition, however, has mainly been defined by scientists, who have researched and understood its nature. I hope that – through discussions – patients can develop a more articulate perspective and therefore a stronger role in defining a set-up, which can also address their particular concerns.
I hope that we can also strengthen the process between all stakeholders. By increasing information and education, I believe patients can make the treatments a real part of their everyday life, benefiting their quality of life overall.
What do you enjoy most about being a patient advocate?
It’s very rewarding to see the discussions around the patient perspective and to see the positive outcomes that come from people committing their own time to a similar goal.
