lisa machado: the humanness that patients need is being lost

besides the toll it has taken on countless lives, the pandemic has also hit healthcare systems hard, not only pushing them to the brink of collapse, but also forcing hospital and clinic administrators to rethink the ways they have traditionally delivered care. with the arrival of the virus, family care teams have felt distant as they close physical spaces and move to virtual or phone appointments. for some offices, coronavirus was the nudge they needed to implement the telemedicine strategies they had been planning for years.

i realize how crazy that might sound. after all, i work with people who live with cancer and their families, helping them get the right care, educating them on drug access and their disease. i support patient portals. i believe that patients should have the option to access their reports. i also support the notion that access to personal records improves outcomes, allows patients to become experts in their own care and empowers them to monitor their health like their life depended on it. sometimes they catch little things that have been missed, like a forgotten referral. other times, the oversight is bigger and life-changing, like a misdiagnosis . there’s no question that online access to personal health information shifts power to the patient — where it should be, of course. this is our life, after all.

i wrote a story a few years ago about patient portals, whether or not access to health information was beneficial and how technology was changing the way patients interacted with their healthcare team. the idea for the piece came after my brother got a stage four liver cancer diagnosis through his patient portal on a friday night, and then had to wait until tuesday to hear a live voice explain not so much what the results meant, but what happened next. days later, a colleague learned she had metastatic cancer by reading her scan results online, only to be told by the oncologist who saw her three days — three days! — later, “well, you already know the details, so what do you want to do about it?”