Ilene Corina, of Wantagh, a suburban mother and wife, had no intention of founding a movement to educate the public about patient safety. But the death of her almost 3-year-old son, Michael, due to a medical error, set her on a path to help others avoid a similar tragedy.
In 1996, Corina founded PULSE — Persons United Limiting Substandards and Errors in Healthcare — as a non-profit, support group to improve patient safety and reduce the rate of medical errors in the United States.
“It started with support groups,” Corina explained. “There are so many stories about bad outcomes. We provided an alternative to lawyers, a place to tell your story. What we learned is that we need to change the system. People need to be educated and be involved in their care. They need to learn how to effectively communicate with their health care team.”
Dr. Leslie Farrington, PULSE board chairman and volunteer, agrees. “There is a real need for patients to learn to be their own advocate or to have someone there to advocate for them.”
Farrington, a gynecologist, has first-hand knowledge of the health care system, having worked in obstetrics and gynecology for North Shore-LIJ Hospital for 25 years before going into a private practice in Freeport five years ago.
“In 1996, my mother had a minor car accident and had some fractured bones,” Farrington explained. “My mother was in the hospital where she was a nurse and I was very trusting of them. But they didn’t give her prophylactic blood thinners and she had a pulmonary embolism and died.”
Now, prophylactic blood thinners are standard protocol. “Back then it was different,” she said. “I learned the hard way.”
Farrington pointed to the increase in medical errors over the last decade and a half. “Medical errors are the cause of 400,000 deaths in the U.S. a year and that’s up from about 44,000 a year 15 years ago,” Farrington said. “Numerous studies indicate that more engaged and informed patients have better outcomes.”
Now Corina and her team of volunteers are seeking imaginative ways to engage the community on this topic. “We don’t offer medical advice,” Corina said. “That’s not who we are. We work to empower the public, increase effective communication and respect between health care providers and the public, and create community partnerships to lead to safer health care environments.”
PULSE programs have grown over the years and include a Speakers Bureau that makes presentations on patient safety; and patient advocacy training workshops on a variety of topics including avoiding falls, infection prevention, medication safety, and discharge planning. Additionally, PULSE founded Professionals for Patient Safety; the Peer Counseling and Support Group following a medical injury; Bed Side Counseling; and the Critical Communication program.
On April 20, PULSE will host a spring symposium on the “Changing Culture of Healthcare, Impacting Patient Safety” at the Holiday Inn in Plainview.
“We are also working with vulnerable populations — those with HIV; we speak with the Day Laborers in Freeport and the young women at MOMMA’s House,” Corina said. “Each of these groups of people have different obstacles to overcome for appropriate care. We are there to help them for the best possible outcome.”
Beverly James, a nurse who is another PULSE volunteer and board member, said she has participated in PULSE panels on health care issues. “I’m very interested in patients being treated fairly and with respect,” she said. “And there are many health care issues people need to address — not just end of life care but other things like medication errors or having a advocate if you can’t speak for yourself. PULSE does this; it is grassroots. I love it.”
Corina is now president of PULSE having turned her vision to help others into a job with a small stipend. The organization is supported mostly by private donations and occasional grants. Still, the organization is fueled by the enthusiasm and inspiration of its volunteers working together for change.
“Ilene is a pioneer,” Farrington said. “No one but PULSE does this kind of work. I’m so passionate about this.”