The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine’s Computer Age

Chapter 22A Community of Patients

Therein the patientMust minister to himself.

—William Shakespeare, Macbeth

I served as the program director for the Sixth International Conference on AIDS, held in San Francisco in June 1990. When I accepted the job, I knew that organizing the world’s preeminent AIDS gathering would be daunting. There were 4,000 scientific papers to judge, 12,000 participants from around the world to accommodate, and 1,500 members of the media to feed and placate. As a naive 31-year-old physician just finishing my clinical and research training, I understood virtually nothing about patient engagement, and even less about activism.

I learned quickly. By the time the conference ended, I had fielded several calls from AIDS activists ...