An interview with a patient, participating in the PERSIST clinical study at the University of Latvia
A woman at the age of 75, a breast cancer patient, participates in the PERSIST clinical study at the University of Latvia. In an interview, taken by Amanda Boka, she shared her experience and feelings about being a clinical study participant and using technologies in her fight with cancer.
What motivated you to join the PERSIST clinical study?
The participation was offered by my doctor whom I absolutely trust. My thought was – if it helps others to create any positive or high-quality emotions, helps fighting the tumor, inspires them during the struggle – it’s enough for me and I’m in!
How do you feel in the study? What do you find interesting in it?
The project has definitely encouraged some positive emotions. It helps me to follow my state of health in general, e.g. the blood pressure and the steps I’ve made throughout the day. The opportunity to view the data stimulates the consciousness of the need to get moving. I love seeing how many steps I have walked while I work at the garden, for example. It prompts my interest and trains my discipline!
What I struggle with, is the questionnaires – there are so many of them that I get lost in what exactly should I fill out. I usually leave the questions about anger blank. I also do not enjoy doing the video diary as I am not very talkative in front of a camera. Perhaps a prompt suggestion could help to start the story. I think that what matters is also the technical quality of the devices. I myself have sometimes experienced some technical issues and wondering if it’s me who did something wrong. But it turns out, there can be some technical problems regarding connecting the servers.
What’s your opinion about technologies helping cancer patients/survivors?
In my opinion, it depends on the age and their digital skillset. Most people my age (75) do not even use a mobile phone. It is not only about the skills though, for a lot of people it’s a matter of availability of budget. So, the chance to be involved in using health related technologies and applications can be burdensome, unless the family helps – financially or with an advice.
What would you like to see in an mHealth app which you would find really useful for your life?
As I stepped into the project later than everyone else, I would have loved to meet the rest of the participants and to participate in a common workshop on the usage of the devices and the app.
Do you have any recommendations to this or other similar clinical studies?
I think that for people who are natural communicators the use of the application is a good source. It really depends on the type of the person – but the main benefit of the application is the feeling of helping others.