An engaged patient is someone deeply involved in the scientific understanding of their disease, fully aware at all times of the entire spectrum of available therapeutic options. It requires a set of learning, cognitive and psycho-social tools that can only be acquired by conversing often with a real network of peers who are similarly involved in this complex endeavor. Because most of the communities where these activities take place are either hidden or hard to find (due to privacy concerns), the health care world is usually unaware of the depth of experience demonstrated daily by these groups. It reminds me of what Michael Nielsen said in Re-Inventing Discovery:
But often the most important revolutions aren’t announced with the blare of trumpets. They occur quietly, too slowly to make the news, but fast enough that if you aren’t alert, the revolution is over before you’re aware it’s happening.