Patient advocacy group aims to educate
May 20, 2011NORTH COUNTRY— Lori Nerbonne did not start out on a mission. She started out as a daughter trying to get answers about her mother's death. Now, she is an advocate and educator for patients and patient's families across the state and country.
"In January of 2004, our mother Dorothy Etheridge underwent lung surgery in a New Hampshire hospital. The surgery began an 8-month odyssey of preventable hospital acquired infections, lapses in care, delays in treatment, complications, and in the end, her eventual death from errors that were never disclosed to us until we read her medical record," reads the NH Patient Voices website, put together by founders and sisters Lori Nerbonne and Kelly Grasso, who has since moved onto other things professionally.
The group formed out of Nerbonne and Grasso's desire to help others who are navigating the health care system, starting as a grassroots group back in 2005. Nerbonne and Grasso went through a difficult process, trying to determine exactly what caused their mother's death, and during the course of it, realized that their plight was not uncommon. The Center for Disease Control (CDC) estimates that 5 to 10 percent of hospitalized patients get an infection, resulting in about 99,000 deaths per year from hospital-acquired infection. You are more likely to die from treatment you receive in the hospital than in a car accident, states NH Patient Voices' site.
One of New Hampshire Patient Voices' first battles was the passage of a bill requiring hospitals to make infection reports, and it taught the women a lot about the legislative process.
"It opened our eyes up," said Nerbonne. "The room was filled with health care lobbyists to protest against the bill. We were the only ones there to provide a patient voice."
Nerbonne and her sisters testified twice, as well as printed and passed out flyers outside the legislative voting room. The bill was eventually passed in 2006, after being killed the year before. Nerbonne said she was naïve to how the process worked before following this bill. After it was passed, it was another three years until the law was funded. Nerbonne said the delay was due to some back door lobbying with the Ways and Means Committee. Last August, the state's first health-acquired infections report came out, finding that
The experience has not dissuaded Nerbonne and New Hampshire Patient Voices from testifying and supporting other legislation that seeks to cut down on hospital-acquired infection and give the patient more of a voice. Last fall, NH Patient Voices launched a website, formed a corporation, and decided to apply for non-profit status. In addition to its advocacy efforts, New Hampshire Patient Voices also educates.
"When we founded the organization, a significant part of our mission was education and raising awareness," said Nerbonne.
New Hampshire Patient Voices offers a lesson to anyone who is willing to listen, from employee groups to students. Earlier this month, Nerbonne was a speaker in a class of medical students at Dartmouth exploring the non-disclosure of medical events.
"I think within the health care profession, there's a general impression that all patients are out to sue," said Nerbonne, adding that is not the case, and that less than two percent of all injured patients actually sue. Nerbonne hopes she gave the students a new perspective in offering that it is not disclosing an event that often causes legal action.
"Often, it is the non-disclosure itself and the lack of communication after a serious accident happens that causes a patient to sue because that's the only way to get to the information…often, suing is the last resort for many people," she said.
Education can also work on a one-on-one basis, said Nerbonne, who sometimes has phone calls from patients or the families of patients who have had serious issues with health care quality.
"We remembered that, when it happened to us, it took weeks to even file a complaint," she said, adding that the New Hampshire Patient Voices website offers resources for those with questions.
She said others have compared the experience of having a loved one die from a hospital-acquired infection and not being able to get any information as to what happened to a hit-and-run accident because "you never know what happened."
"Often, [suing] is the only way for them to get the information needed to move on," said Nerbonne.
The culture in the past, enforced by law, was when a patient dies because of infection, the hospital didn't have to report any information, but this is slowly changing, said Nerbonne. Many hospitals, including Dartmouth, now have open-disclosure policies. Some of the most progressive in the country offer an apology, and have their lawyers sit down with the families to discuss compensation.
Nerbonne also advocates for people who are severely injured by the health care they receive at the hospital, and are often faced with enormous medical bills. In these situations, people may reach the cap on their health insurance, and end up relying on public assistance. Preventing hospital-acquired infections can save taxpayers money, argues Nerbonne.
Nerbonne is hoping to make the North Country more aware of New Hampshire Patrient Voices, which is based in Concord, and its services. An important partner in this goal is Landaff resident Karen Bronson, who heard about New Hampshire Patient Voices after she had trouble finding out information about her father's death. Now, she is on the group's board of directors, and is working to bring awareness of the organization to the region.
"It's not anecdotal anymore. It's not just happening to the elderly. It's not that uncommon," said Nerbonne. "This is at the center of health care reform."