After surgery last spring, Kristen Davis suffered adverse reactions to a steroid used during general anesthesia, including steroid-induced mania and hormones elevated ten times above normal levels. “It was a living hell,” said Davis, who also experienced iatrogenic PTSD from the ordeal. Worse, she discovered, the drug was unnecessary for her procedure, and no one had spoken with her about its use before the surgery.
Davis tried talking to her surgeon and anesthesiologist, but they dismissed her concern. Even medical professionals in her family failed to listen. She was overreacting, they said, and should have asked more questions upfront; her doctor was just doing his job. The reactions only served to rewound her.
“I wanted somebody to be held accountable,” said Davis, who lives in Salt Lake City, Utah. “But I didn’t know how to do that. I didn’t know what the government agencies were; I didn’t know who to complain to.”
This is what Davis was looking for when she stumbled upon ProPublica reporter Marshall Allen’s 2012–2016 investigation into patient safety, which covered the prevalence of medical error in the U.S. health care system and provided resources for patients. There she not only learned where to formally voice her complaints; she discovered the ProPublica Patient Safety Community, a public Facebook group where those who have experienced medical harm can share information and connect with others. Launched in 2012, the active community has more than 5,500 members and is still moderated by Allen to this day.
“The group has helped me feel less isolated,” said Davis, who remains a dedicated member a year later. “It’s like a little online support group. I feel heard and validated. Members have given me valuable resources for getting what I need out of medical care, and I’ve also been able to give advice to others who are going through the same thing, from recommending PTSD therapies to how to get informed consent from anesthesiologists.”
Davis’ participation in the ProPublica Patient Safety Community also triggered her decision to increase her advocacy efforts. She is currently studying to receive her patient advocacy certification. “After this incident, it’s pretty obvious to me that we all have to be our own advocates,” she said. “I want to also be able to do that for my friends and family, so they have somewhere they can turn.”