In 2003, Consumers Union began its national Safe Patient Project with the initial focus of reducing hospital-acquired infections, a leading cause of death in the US. We advocated for the public’s right to know of individual hospitals’ infection rates as a way to highlight the problem and pressure hospitals to improve prevention. From our online activists, including more than 185,000 Californians, we recruited people with a passion for reducing medical harm to help shape and eventually lead this work. Our strongest activists are people infected while hospitalized or those who had loved ones who were. Together, we have pursued reforms in nearly every state.

From the beginning, Californians stood out from the crowd. They became highly engaged by sharing their stories in support of our common goal. Shortly after the death of their 15-year-old son Nile from an antibiotic-resistant infection, Carole and Ty Moss of Gavilan Hills joined Consumers Union. In 2008, they led the effort to craft Nile’s Law in California, one of the strongest hospital infection reporting laws in the country. They recruited Sherman Oaks resident Alicia Cole, a survivor of multiple severe hospital-acquired infections following minor surgery, to join their legislative efforts. Alicia proved to be a passionate voice for patients, even though at the time she was still suffering from her infections.

Also notable in their support were Michele Monserratt-Ramos of El Camino Village and Tina Minasian of Roseville, who began pushing the Medical Board of California (MBC) to become more responsive to patients and the public, and specifically to make sure people had information about the history of doctors who were still practicing despite serious substance abuse problems. They were leaders in helping develop our strategy for better oversight of physicians.

At MBC, activists routinely attend and comment on physician oversight issues, with many successes. We made the agency’s meetings more accessible to the public with webcasting of all meetings and with public comments via phone during meetings, achieved implementation of adverse event reporting and better information online about doctor-owned outpatient surgery centers, and petitioned MBC to require doctors on probation to inform their patients.

Consumers Union’s Safe Patient Project supports these remarkable activists in the same way professional organizations support health provider advocates. Consumer activists participate in important decisionmaking meetings and work strategically to bring about change.

This network — bonded by personal tragedy and engaged in focused, purposeful activism — has accomplished more than we ever imagined possible. Their work has shed light on the problem of medical harm — the human cost, and the path to solutions, especially through transparency of medical processes and outcomes. Their dedication, relentless work, and bravery in speaking their very personal truth to power has propelled California to respond to the needs of harmed patients.

Equally important, their work has shaped a movement to eliminate medical errors and infections. Through their involvement, Consumers Union activists have developed into deep subject matter experts, savvy strategists, organizers, educators on prevention of medical harm, regular media spokespersons, members of federal committees, and even volunteer lobbyists. Some are nationally recognized advocates for patient safety.

Of course, much work remains. The renowned cultural anthropologist Margaret Mead observed that it’s up to people, not government of its own initiative, to solve problems. “All social movements,” Mead noted, “are founded by, guided by, motivated, and seen through by the passion of individuals.” That truth is at the heart of Consumers Union’s Safe Patient Project network. There are none more passionate about bringing change and accountability to our health care system than those who have personally experienced medical harm. Their activism has yielded powerful results that protect patients in California and across the country.

The California Health Care Foundation provides support to Consumers Union to help develop and increase the voices of consumers in the policymaking process. CHCF funding is not used for lobbying activities.

Betsy Imholz

Betsy Imholz is special projects director for Consumers Union, the policy and advocacy division of Consumer Reports, and works in its San Francisco office.

Lisa McGiffert

Lisa McGiffert directs the national Safe Patient Project for Consumers Union and is located in Austin, Texas.