Many consumers, savvier and armed with more digital information than ever before, are forming advocacy and support groups, such as the Society for Participatory Medicine, to push for better access to their own records and a bigger role in decision-making. Healthcare is "an entire industry that was built around a passive customer who didn't think he or she had the right to question anything," says Diane Pinakiewicz, president of the National Patient Safety Foundation. "Now you have educated people who want to be involved and are no longer passive recipients of care."
Mary Brennan-Taylor wishes she had known what steps to take to advocate for her mother. "I felt responsible for not being able to protect her," says Brennan-Taylor. "I was totally trusting. I never asked the doctors and nurses coming into her room to wash their hands. I never checked her medication." Brennan-Taylor hopes that by continuing to speak out, she can help educate a new generation of doctors, encourage patients to stand up for themselves, and, as a result, make hospitals safer places. All worthy goals, all long overdue.