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Humanizing Digital Medicine


Graphic of person wearing gas mask in front of city.

Illustration by Nathalie Lees, courtesy Guardian News & Media Ltd

My career has focused on ultra-rare diseases that have very few patients. Their clinical trials can be smaller and faster than those of a typical drug used in a broader population. It’s been exciting to see several rare diseases go from untreatable all the way to the holy grail of gene therapy.

Traditionally, clinical drug trials have been dependent on multiple in-person clinic visits, which can put immunocompromised patients at risk. But the pandemic has forced the accelerated adoption of digital data collection to keep drug development on track—digital sensors can potentially collect data in ways that replace physical exams, and some follow-up studies can rely on “remote visits” to gather post-approval data. The FDA is supporting this rapid evolution and recognizing the validity of that data. Even home health visits have been altered to reduce risk to the patient while staying within the trial protocol.

Digital connectivity can help erode the loneliness of a rare disease diagnosis.

Leveraging digital innovations has most certainly helped get critical medicine to more people quickly while reducing COVID-19 exposure, but there are also drawbacks to be wary of.

Ultimately, these changes have sped up the advancement of health care delivery. It’s definitely a positive development that companies can continue a clinical trial with modified collection of data using sensors or telehealth, so the drug’s march toward approval is not arrested. However, the intervention of a caring practitioner is proven to be healing in and of itself. We should be wary of removing some of the human component to care.

I’ve seen digital connectivity help erode the loneliness of a rare disease diagnosis, too. Terrified parents receiving a devastating diagnosis for their child can have their isolation eased by connecting with others. A mom can hold her crying, newly diagnosed newborn at 3 a.m. in Boston and Skype with a “mum” in London who was in those shoes just six months ago but found a therapy or trial that is helping her child. This human connection is such a fabulous thing to witness—informed parents supporting each other in genuine, warm ways with hard-earned wisdom, and able to share it at the exact moment it is most needed.

If we’re thoughtful about how we deploy new digital innovations, we can get patients the treatments they need more quickly, we can keep them safe during a pandemic, and we can keep the human element in the healing equation.

Courtney Rice ’96 is a consultant specializing in the development and marketing of rare disease therapies through her company, Acadia Strategy Partners.