Ikigai: A Reason for Being

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...

Cancer’s Longterm Effects

I recently attended a reception in San Francisco for a cancer advocacy group and I was struck by a particular story one of the speakers told as part of the evening’s events. Generally, patient stories are an effective way to communicate both the heartwarming examples of our progress in cancer...

Ciitizen’s Biden Cancer Summit

This past March in Las Vegas, I slipped between thousands of business suits and briefcases, the swaying badges of the HIMSS conference draped around the many craning necks, and found my seat for the event’s first keynote speech: a presentation by Seema Verma, the Administrator for the Centers for Medicare...

The Value of Our Health Data

Immediately upon joining Ciitizen as director of marketing and communications, I had a lot of homework to do. I understood the mission: to help sick patients, particularly those battling cancer, obtain and share their health data. I understood the point: the advance of precision medicine and modern care is dependent...

My Sister Tania

In April of 2014, my kid sister Tania went to the hospital complaining of pain in her breast. Her record shows that she described symptoms typically considered red flags for a tumor. She felt a hard mass in her left breast weeks before making this appointment. She claims the coloration...

The Birth of Ciitizenship

Believe it or not, our de-identified health data has probably been bought and sold several times without our knowledge. Yet, getting a personal copy for our own use is like pulling teeth. Our records seem to be readily available when a large research company writes the hospital a check, but...