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Patient activism has different meanings and implications for different individuals. Some of these definitions describe patient activists as people who educate providers about the world of personalized medicine and empowered patients, while others describe their job as building local health activist communities and promoting local change.

Others believe that a patient activist’s job is to teach other patients and caregivers how to negotiate the health care system. An activist wants to change the health care system and help or empower others to do the same thing and to take an active role in their personal health care.

Patient activists may engage in new groups and communities, aiming to change the conversation around health care so that patients’ needs take priority. They study legal issues of health ...

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