A profession is born to help people navigate the health care maze
Victoria Colliver, Chronicle Staff Writer
Thursday, October 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.
 Advocate
Joanna Smith (back left), hired by Margalit Mathan (left) to coordinate
care for Mathan's daughter Siona, 7, accompanies them on a visit
with Dr. Eugene Chang.
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 joanna@healthcareliaison.com E-mail Victoria Colliver at vcolliver@sfchronicle.com.
http://sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/10/18/MNJQSQA2O.DTL
This article appeared on page A - 1 of the San
Francisco Chronicle
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