Published in: San Francisco Chronicle
Written by: Victoria Colliver
10/18/2007 – Margalit Mathan and Peter August found themselves caught in a maze of medical appointments and conflicting professional opinions when their 7-year-old daughter developed serious eye problems related to her juvenile rheumatoid arthritis.
The Berkeley family decided to consult yet another professional. They turned to a health care advocate, an adviser who specializes in helping patients and their families cut through the health care bureaucracy to find the help they need.
“It’s been this huge roller coaster with the medical system and negotiating her different needs and the different information we’re getting from different doctors,” said Mathan, a high school psychologist. Her daughter, Siona, was diagnosed two years ago with arthritis, a condition that can cause eye inflammation and, in Siona’s case, led to glaucoma.
Private health care advocacy is a new and growing field emerging at a time when an increasing number of Americans find themselves dealing with a chronic disease, aging family members or the bureaucracy of health insurance.
A professional advocate might have some background in health care, such as nursing or medical social work. But the business of health advocacy is unregulated, and people who call themselves a health advocate might have no training other than helping a family member through a difficult illness.
Joanna Smith, the health advocate Mathan hired to help her family, wants to change that.
Smith, a medical social worker and former hospital discharge planner, is the founder of Healthcare Liaison, a Berkeley health advocacy group. She also is part of an effort to create professional standards and a credentialing program for the nascent profession.
“From a consumer-protection standpoint, there just are not standards. So anyone literally can hang up a shingle and say ‘I’m a health care advocate,’ ” Smith said. She is holding a two-day workshop later this month at Samuel Merritt College in Oakland to introduce potential new advocates – people who already have a degree in a medical field or social work – to the profession.
Smith said she’s concerned that well-meaning people who are driven to help others by their personal experience with the health care system alone may not have the necessary background to aid people with needs that range from insurance coverage to clinical research.
“People are clearly overwhelmed by health care and are seeking people to help them out with it,” said Smith, who charges about $150 an hour. “We just need to make sure the people helping them out are capable of doing that.”
Sarah Lawrence College in New York in 1980 established the first – and still the only – master’s degree program in health advocacy and caters to all forms of the practice. Other universities have credentialing programs, but requirements vary. Still, no state has an official licensing process.
Independent or direct patient advocacy, like the kind Smith practices, is just one type of practice. Health advocacy is actually a broad field that includes organizations that push for advancements in disease treatment, some of which may work with individuals, as well as groups that advocate for political change.
In some cases, health advocates have a corporate tie-in. Some work for insurance companies or hospitals, while others might be hired by an employer as an employee benefit.
“It’s not unusual for the people we expect to work on our behalf … to be paid by an institution that wants to save money,” said Marsha Hurst, former director of the Sarah Lawrence program who is a consultant and research scholar at Columbia University.
Consumers shouldn’t automatically dismiss such advocates, Hurst said. But, she said, they need to ask enough questions to be assured the advocate can work effectively in their best interest.
Maggie Hoffman, of Great Neck, N.Y., calls herself a “kitchen table” advocate.
Hoffman was drawn to the profession by personal experience – her late father’s struggle with leukemia and the premature birth of her twins nearly 20 years ago. She is the founder of a program called Project DOCC, which helps health providers deal with the problems of chronically ill children and their families. She’s also a student in the Sarah Lawrence program.
“While one does not necessarily need an academic background … it’s important to understand health care policy and the health care system and acquire more tools to work with,” she said.
Although most advocates who offer direct patient services are one-person or small businesses, a few large companies have entered the field.
Pinnacle Care International, headquartered in Baltimore, employs about 55 advocates working in 10 states.
Unlike individual advocates, who can charge by the hour or set a fee based on time, Pinnacle sells a one-time membership of about $3,000 plus an annual fee that can go as high as $30,000. Its services are similar to “concierge” care, or a type of premium care that is offered by some physicians on a retainer basis.
“What we try to do is determine how much time and effort is going to be required to help them,” said John Hutchins, co-founder of the 5-year-old company. “This isn’t like handing them a name and number and saying, ‘See you later.’ We’re high-touch, on the ground with them. If they go to other different hospitals to get the best treatment, we’re right there with them.”
Doctors say patients who come to their visits with a good, professional health advocate can take better advantage of their appointment times.
“The professional advocate will really focus the patient, so the visit becomes a whole lot more efficient,” said Dr. Joanna Cooper, an East Bay neurologist who has worked with Smith on several patients’ cases.
Mathan said Smith helped her family make the decision for Siona, a Kaiser patient, to undergo surgery at UC San Francisco in August. Mathan said Smith makes physician visits easier because she knows what to ask the doctors, and can also help ease Siona’s anxiety.
“It’s unfortunate we need it, but in the system we all live in right now, if you’re dealing with something really complicated, I can’t say enough about how helpful it is,” Mathan said.
Tips for choosing a health care advocate
If you decide to seek help in navigating your medical needs or those of another:
Do research: In many cases, especially for seniors, free counseling or help might be available. Disease-specific groups, online social networks and community and other nonprofit organizations can steer people with certain conditions to resources.
Ask questions: If you decide to hire a professional advocate, ask detailed questions about the person’s professional background, area of expertise and why he or she chose the field. Request references.
Check insurance: Health insurance generally does not pay for these services, and fees vary greatly, so make sure up front that payment structures work with your needs and your budget.
Source: Chronicle research
For more information about the health advocacy workshop in Oakland on Oct. 27-28, contact Joanna Smith at email@example.com E-mail Victoria Colliver at firstname.lastname@example.org.
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