When Julie Harris battled breast cancer several years ago, she relied on fellow nurse practitioners to serve as her personal advocates.
Harris, a Norton resident, asked her colleagues to accompany her to procedures and doctors’ appointments so they could provide support, ask questions and serve as another pair of ears during the emotional time.
“I knew I wouldn’t be able to remember half of what I heard,” she said. “I wanted someone with me who could make sure I was getting what I needed. To have that kind of support, it was tremendous.”
Harris and her sister Bonnie Pepperney of Akron have served a similar role for another sister, who has a chronic, degenerative nervous system disorder that requires around-the-clock care.
Through their work as nurses and their personal experiences, the sisters often wondered: “How would anybody get through this who do didn’t have a [medical] background?”
Now the two are turning their combined 60 years in the nursing field and their knowledge from helping friends and family into a new business.
Harris and Pepperney launched a health-care advocacy consulting firm known as Health Assist Specialists LLC this month to help patients and their families navigate the complexities of modern health care.
Consumers can hire them to compile a patient history, go with them to doctors’ appointments, research options for services, assist with insurance questions, help with decision-making and provide other advocacy services, the sisters said.
“I really want to know what’s going on with the person,” Harris said.
Harris, 53, retired about two years ago after working as a nurse practitioner for 25 years in neonatal intensive care units in the Cleveland area.
Pepperney, 61, has experience working in a pediatric hospital as a licensed practical nurse and now works in a dermatology practice.
Both sisters said they’ve seen firsthand the need for patient advocacy.
In the office setting, for example, elderly couples often struggle to help each other understand their medical care, Pepperney said.
Though the services are available for patients of all ages in all circumstances, Harris said they see a large potential market among elderly patients, who “have more of an issue navigating the system.” Adult children also could benefit from the help coordinating care for their parents.
Clients fill out forms permitting their advocate with Health Assist Specialists to have access to their personal health information, Harris said. The advocate also can share summary reports after appointments with adult children or others the client has designated.
The patient advocacy industry is still in its infancy, with most ventures starting within the past five years, according to Elisabeth Russell, president of the National Association of Healthcare Advocacy Consultants.
Russell founded a full-service patient advocacy firm in Virginia called Patient Navigator after her own experience with her young daughter’s cancer battle. She joined with other patient advocacy consultants to help start the national association four years ago “to set standards for this emerging profession and best practices,” she said.
“It really comes about as people with chronic or acute or new diagnoses get thrown into this universe of medical care that they may be unfamiliar with and have trouble navigating,” Russell said. “The system is so fractured and inefficient, it’s not the kind of thing you want to learn on the job as you’re trying to figure out what cancer treatment to get.”
The nonprofit industry group has about 200 members, who all agree to abide by a code of ethics. Health Assist Specialists is one of only two members in Ohio.
Rates vary by region, but patient advocacy firms nationwide typically charge between $60 to $250 per hour for their services, Russell said.
Clients pay out of pocket for health-care advocacy services, which aren’t covered by insurance, Russell said.
“We don’t work for the insurance company,” she said. “We work only for the patient and the family to help them find their way through a complicated system, overcome obstacles, find the right care, become well-informed and become educated on their disease.”
Health Assist Specialists is charging $40 to $50 per hour for many of its services through an initial package.
“Since it is out of pocket, we want people to be able to afford it,” Harris said.
The sisters are trying to get the word out about their services by attending health fairs and distributing information to area primary-care practices and large companies, who they said could benefit by linking workers up with the service to help with their aging parents.
As the business takes off, they plan to hire other nurses to work with clients.
The field doesn’t have any licensing requirements on a state or federal level, but Russell said she expects the industry “is moving in that direction.” Several universities and programs across the country also are starting to offer classes and certification programs.
Russell recommends that consumers interview potential health-care advocates and ask for references before hiring a consultant.
For more information about Health Assist Specialists, visit www.healthassistspecialists.com.
Cheryl Powell can be reached at 330-996-3902 or cpowell@thebeaconjournal.com.