Working Life: As a person with CF, I know how important it is to include patient voices

Jen Balfe, doctoral researcher, RCSI University of Medicine and Health Sciences

Jen Balfe, doctoral researcher, RCSI University of Medicine and Health Sciences. 

6.30am

The day starts noisily with my toddler and six-year-old negating the need for alarm clocks and welcoming the morning with laughs and chatter.

9am

I prepare for a meeting with my PhD supervisory team. My research is investigating the experience of people with cystic fibrosis (CF) and the healthcare professionals involved in their care during the pre-conception to post-partum period.

9.30am

My PhD supervisors are Dr Aisling Walsh, RCSI, Dr Jen Donnelly of the Rotunda Hospital, and Dr Sarah Tecklenborg of Cystic Fibrosis Ireland. Their enthusiasm for the project is incredible. We discuss progress and set new targets.

10.30am

I type up the minutes and my reflections on the progress while they are fresh in my head. Then it’s time for a cup of tea with my mam and a play in the garden with my little girl, enjoying the fresh air and sunshine.

11.30am

I have a Zoom meeting with a shared learning group of PhD students with an interest in embedding public and patient involvement within their research. As a person with CF myself, I know how important it is to include patient voices in research and, as a researcher, one of my main goals is to meaningfully include the voices of participants.

12.30pm

Before heading to collect my eldest daughter from school, I respond to an email from another researcher, hoping to collaborate on an upcoming event and I work on project materials.

Time then to pick up my daughter. Hearing about her day is one of the highlights of mine.

2pm

I screen abstracts for a literature review.

Later in the afternoon, I call Cystic Fibrosis Ireland patient advocate Caroline Heffernan, and we discuss new ideas for offering supports during pregnancy and parenthood to people with CF.

5pm

After dinner, the Encanto soundtrack goes on and it’s kitchen disco time before books, stories and bed, followed by preparation for my biostatistics lecture in the morning, before tea and biscuit time with my husband.

Every day is different, which I love. I feel privileged to work in an area I feel so passionately about.

• Please support Cystic Fibrosis Ireland on 65 Roses Day by taking part in a 65 Roses Challenge, donating online at 65Roses.ie or purchasing a purple rose in participating Dunnes Stores, shopping centres and other outlets nationwide