In late 2011, my father was diagnosed with late stage multiple myeloma. Thus marked the beginning of a long, two year battle-not only against cancer but to reclaim human dignity.
Anyone experiencing serious illness lives through the burden of an undignified experience; it is a consequence of our reasonable expectation for life. My father, a physician by trade, understood that very well. In his days of practice, he had seen countless patients, despite their illnesses, struggle through in the most dignified manner. Nonetheless, it was only when he became a patient himself, that he came to fully grasp the enormity of the challenge.
My father had always been a meticulous person, carrying out everything with the utmost care and attention to detail. Growing up, I remembered that he had this oversized notebook where he carefully organized and recorded his patients’ information. For him, legal documents had to be read thoroughly, expenses had to be tracked, all equipment accounted for, and most unfortunate for me, my report card had to be examined thoroughly. He often insisted on double checking that the lights were off and the doors were locked. It was one of the most important things I learned from him: attention to detail.
He approached his own treatment in the same way. Whenever he slightly recovered, he would review all aspects of his lab results, biopsies and treatment regiments, organize them, annotate them, and reorganize them. He asked me to buy medical books to look up information on side effects, treatment options, and genomics. For each consultation with the oncologist, he always meticulously prepared notes, with his own annotations and hand-drawn charts. Everything was as thorough as possible, because all this information was for the most important patient he had yet to treat: himself.
Often times, the medical reports and lab results came with information that spelled impending doom and were too overwhelming to accept. Nonetheless, we would always muster the courage to confront it. On occasion, during remission, they were bearers of great news, of hope.
It wasn’t until years later that I realized his habitual ways of organizing and managing his health data was also an emotional outlet. It was one of the many ways he tried to reclaim dignity. Despite being denied the healthy body most of us have come to expect, or even a hopeful future, it was paramount that he had access to his current state of affairs. The act of organizing his records was his way to grab onto a certain familiarity to regain control, and he clung to that as an emotional anchor. It allowed him to talk to doctors and nurses as an informed patient; to discuss his own treatment with our family; and most importantly, to have an independent and informed voice in making choices about his own health. It was his way to find human dignity amidst a cruel reality.
Fast forward five years, I am now at Ciitizen where I have been given a tremendous opportunity to address the same data challenges that my father obsessively struggled with. I understand the deep implications of patient data, the emotional weight it carries, and how paramount it is for patients to regain control of their data. In undertaking this enormous challenge, my father’s experience will be an ever present guiding light.
Working at Ciitizen reminds me of a Japanese philosophy called ‘Ikigai’. It is a balance of what I love, what I am good at, what my vocation is and what the world needs; but with an added dimension — a strong sense of urgency. It’s what brought me here to do what I now do.
-Wen Shu Tang
Wen Shu Tang is a senior engineer at Ciitizen.
Originally published at https://blog.ciitizen.com on October 5, 2018.