Researcher & Patient Collaboration to Humanize Care: Ella Balasa

Humancare

Researcher & Patient Collaboration to Humanize Care: Ella Basala

“ People really do accept and like us for who we are. It has taken a long time to understand that. As a younger person dealing with a chronic illness, that was definitely an inhibitor for me to make these close relationships and to just to be myself.“

– Ella Basala

About Ella: Ella Balasa is a patient advocate and a person living with cystic fibrosis. Diagnosed at 18 months old, cystic fibrosis (or “CF”) is a life-limiting, invisible, chronic, and rare lung disease. Before digging into Ella and her background, I want to shed some more light on what it means to have CF to give you all some context: Since early childhood, Ella has had countless hospitalizations to receive intravenous antibiotics to treat the lung infections that are the hallmark of the disease. These infections deteriorate the lung tissue over time, reducing function, and ultimately leading to failure requiring a double lung transplant to prolong life. Her disease is becoming visible as she requires using supplemental oxygen with physical activity. But despite having 28% lung function, she’s never let it be her excuse.With an academic background in biology, Ella is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections. She has spoken publicly about the value of patient voice in research as well as her experience with phage therapy (which we’ll talk about) as a previous speaker at the FDA, the Milken Institute's Future of Health Summit, and other conferences. She is deeply involved in the CF community through being a director of the US Adult CF Association, serving as a member of research committees for the CF Foundation, and through her passion for writing. Ella writes about her research experiences and introspectively about the hardships, yet triumph that comes with living with a chronic illness. Through these opportunities, she provides a scientific voice and hopes to encourage empowerment in patient communities. In her free time, Ella enjoys cooking, drawing, spending time with friends, and traveling when she can.

To learn more about her work and experiences visit, www.ellabalasa.com.

In this episode, Ella and Eva discuss:

Patient Empowerment in the world of research

The overlooked patient-researcher relationship

The formation of research (and all) relationships through vulnerability

Links to Visit:

Ella’s Website: www.ellabalasa.com

Twitter: @ellabalasa1

Instagram: @thisgirlella

Time Stamps:

3:00 Ella’s Journey with CF

5:42 The role of relationships In Ella’s Journey

7:33 Ella’s personal journey to self acceptance

8:58 The aspect of vulnerability in relationships

10:20 Ella’s experience with connecting through vulnerability

17:27 Is vulnerability in the doctor-patient relationship the same as in research?

19:49 The disconnect of researcher vulnerability

22:17 Ella’s experience with advocacy work

26:28 Why is there a shortage of self advocacy in healthcare?

36:57 How to take action in the researcher-patient relationship as a patient

38:21 How to break the patient language vs. researcher language barriers

48:33 How can patients better self advocate?

53:00 What have you learned from your experience with CF?

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