In this blog post, I wanted to share the excerpted testimony of Jean Rexford, executive director of the nonprofit advocacy group Connecticut Center for Patient Safety, to the U.S. Senate Committee on Aging and member Sen. Richard Blumenthal. Jean is a friend and amazing activist both in her state and nationwide. While her testimony is specific to Connecticut, it contains lessons for the patient safety movement writ large. – Christian
“Preventable adverse events contributed to the deaths of as many as 950 Medicare beneficiaries last year in Connecticut alone. These 950 deaths occurred in Connecticut hospitals – this statistic does not include preventable deaths in our nursing homes or private homes, nor does it include the non-Medicare population. Another 22,000 patients acquired infections while they were treated in health care facilities and almost all of these were preventable.
Three separate recent reports in 2010 and 2011 found that at least one in four patients are harmed while hospitalized, and the financial costs are staggering. Nationally, hospital-acquired infections cost our economy as much as $45 billion, while patient falls in hospitals and nursing homes in 2005 alone added another $34 billion in costs.
Behind each statistic there is a name, a family, a story of sorrow; for some it’s medical bankruptcy, for others, it is unemployment. But for all patients harmed by the health care system, there is physical and emotional pain, a profound broken trust, and disbelief that while being treated they had been harmed by preventable medical errors.
The Connecticut Center for Patient Safety was formed in 2005 to be the voice of consumer patients. We are determined not to be forgotten collateral damage in a terribly broken health care system. Today, we are joined by other advocacy groups in a national patient safety movement. Loosely organized through Consumers Union Safe Patient Project, we work together to promote patient safety, improve quality and protect patient rights.
In Connecticut we are working with another patient focused advocacy group – Code Jump Start. We are trying to shine a spotlight on the need to put the patient first and foremost in this vast medical industrial complex and the regulatory agencies that have in the past not always had patients’ interests in mind.
“We began our work with hospital infections. When I learned in 2005 that there were just two infections reported across 31 hospitals in Connecticut, I knew that it was a good issue to tackle. We were told by hospitals executives with whom we spoke that most infections were ‘expected,’ which revealed to me a fundamental gap between consumer and medical facility perspectives. I can assure you that no health care consumer ‘expects’ to visit a licensed medical facility and acquire a deadly infection as a result of receiving care. It was not difficult to amass stories of patients and families and what had happened to them when they had acquired an infection. Keith lost his job. Mary’s infected hip replacement put her in a wheelchair for the rest of her life.
We brought these stories to our legislature – and legislators added their own stories. Twenty-six states now have legislation requiring public reporting of hospital-acquired infections, and the federal government paid attention. There is an impressive nationwide effort to begin to address infections and needless suffering and costs. But think of the individuals who have died and their families loss because medical facilities were slow to react without legislative intervention.
We have learned over the years that legislation has limitations … Health care consumers will never get all that we want or all that we deserve. There is absolutely no road map for the consumer patient safety movement and only meager funding for advocates. When funding is awarded for patient safety improvements in the clinical setting, there is seldom a requirement for consumer representation on medical facility commissions, panels, and workgroups studying patient safety innovation and quality improvement. Most funded endeavors exclude patient voices altogether.
While we have worked hard to collaborate with hospitals to get a seat at the table to solve the patient safety epidemic, we concurrently faced obstruction by the industry’s powerful and well-funded lobbyists serving profit motives first. We realized we had to think more creatively and decided that nurses make an enormous difference in the quality of care and keeping patents safe. We started an outreach program to nursing schools. Collaborating directly with providers, instead of institutions, seemed a far more positive way to work. Our nursing education program has been successful and continues to grow.
Some doors have now opened and we regularly participate in state and national efforts; however, there is much work to be done to bring awareness to an issue that for too long has been accepted by the medical community, overlooked by regulators, unknown to the vast majority of the general public and unsuspecting patients, and out of the realm of consumer protection. Without transparency and accountability, patients will continue to be harmed by medical facilities that tolerate errors at a rate unheard of in other safety sensitive industries.
We are eager to work with medical facilities and the health care system, and have just recently begun collaborating with innovators that welcome our participation … Islands of excellence … have begun to take shape and make progress, but why aren’t these islands the norm, instead of the exception?
Several years ago, the federal government launched the Partnership for Patients. This was an important initiative for health care providers but it took two years before patients and patient advocates were even invited to Washington to participate. But then we were told not to come. There was no money – no money for the patients.
We were sadly an afterthought. Patients and patient safety must be a reflex. Only when we become an equal partner will we begin to see safe patient-centered care.”