Empowering the patient

Patients who are unexpectedly hospitalized or have been newly diagnosed with a serious illness face myriad challenges as they attempt to navigate a healthcare system that is often fragmented and confusing. But members of a growing field known as private patient advocacy promise help for the overwhelmed.

Services vary but for a flat fee or per-hour rate, advocates guide patients through their experiences with the healthcare system, offering help in decisionmaking, finding the best sites and clinicians, evaluating care plans and providing educational services. Some advocates specialize in conducting research for patients, ferreting out the most appropriate treatment options and determining eligibility for clinical trials. Many also accompany patients to physician visits or visit during hospital stays.

“A lot of what we do is explaining and re-explaining what patients' choices are and what the risks and benefits of each of those choices are,” says Joanna Smith, CEO of Healthcare Liaison, Berkeley, Calif.

Smith is a visible member of the fast-developing field. Healthcare Liaison is now in its seventh year, and Smith has also created a yearlong healthcare advocacy credentialing program for medical professionals interested in pursuing a career as patient advocates. And in 2009, Smith founded the National Association of Healthcare Advocacy Consultants, or NAHAC, a professional organization she says she hopes will provide a venue for advocates to meet one another and share best practices.

Listen to a podcast interview with Healthcare Liaison CEO Joanna Smith

Smith, a former clinical social worker and hospital discharge planner, watched with dismay as patients were lost in the shuffle during transitions of care. “I thought, wouldn't it be great if one person could be a consistent presence for a patient?” she says.

In November, NAHAC held its second annual conference in Washington, which drew a sold-out crowd of 100 attendees—up from 40 the previous year—for sessions in marketing, health insurance, end-of-life care and privacy law.

“The field is still relatively new and it doesn't have a lot of visibility yet,” Smith says. “Nurses and doctors will say to us, I've been advocating for patients for years, but the difference is now there are people who work directly for the patient.”

Smith hesitated to estimate the number of patient advocates working in the field, but she did say NAHAC has about 140 members, the majority of whom are doing private advocacy. There is, at this point, no state licensure or regulations, she adds, which can make it difficult to know the exact number of practicing advocates.

Approximating the size of the field is not easy, agrees Trisha Torrey, author of the blog “Every Patient's Advocate,” and founder of a site that links patients and advocates with one another. After being incorrectly diagnosed with terminal lymphoma in 2004 and later finding out she was, in fact, healthy, Torrey, a marketing professional, began researching and writing about the problems plaguing the U.S. healthcare system.

Since she did not have a background in healthcare and did not feel equipped to be an advocate herself, Torrey created AdvoConnection, a dual-interface website that helps advocates market their services to patients and helps patients find the right advocate. Patients or their caregivers can enter a ZIP code and pull up a list of member advocates and the services they offer.

AdvoConnection has roughly 200 members, and Torrey estimates that number represents about 50% to 60% of the total number of advocates currently practicing.

“Interest is growing,” Torrey says. “When I was misdiagnosed, I knew I was lost and not getting the help I should. The more frustrated people are, the more they realize that there has to be someone who can help them.”

Nationwide, rates for private advocacy vary based on the types of services provided and the professional background of the advocate. Fees can be as low as $50 an hour, but for most advocates, they range from $100 to $200 an hour. Smith, of Healthcare Liaison, charges $175 an hour, for instance. Some advocates also offer a flat-fee rate for a yearlong commitment, Torrey says. And advocates who specialize in resolving medical billing issues might charge a percentage of the bill, she adds.

Dianne Savastano, founder and principal of Healthassist, an advocacy service based in Manchester-by-the-Sea, Mass., says her fees are “in the mid-range,” based on a scale of $50 to $200 an hour. Savastano founded Healthassist in 2004 after a career that included stints in nursing, hospital management, consulting and managed care.

“I thought healthcare is not that consumer friendly and maybe there's a market for someone with my clinical knowledge and organizational business background,” says Savastano, who also serves as NAHAC's treasurer. Years later, she says she feels as though patient advocacy is the natural extension of her previous experiences.

“I can use my clinical background, my project management skills, my knowledge of managed care and employee benefits—it all comes together and helps me to identify with all of the stakeholders.”

Like many private advocates, Savastano's services include education and coaching, on-site advocacy at physician appointments, research, organization of medical records and help with insurance issues.

“Patients turn to advocates because they are frustrated and anxious,” Savastano says. “They're involved in complex medical situations that they are unprepared for and unfamiliar with, and they're experiencing confusion. Some don't have family resources either.”

Private patient advocates are also quick to distinguish themselves from in-hospital advocates, who are employed by a hospital or health system. Hospital advocates can be very helpful, Savastano says, but they are not employed by the patient. Also, she says, in-hospital advocates usually help mainly with inpatient experiences, a very small piece of the overall puzzle.

“Some in-hospital advocates are very good, but there is an inherent conflict of interest,” Smith says. “When you're paid by the hospital, there is the potential for that relationship to affect your judgment. That's not always the case, of course, but there is the potential. With private advocates, the relationship is only between the advocate and the client.”

Advocates claim a long list of victories, including fewer medical errors, better transitions of care, lower readmission rates and less stress for patients. Ken Schueler, director of New York-based HKS Patient Advocates, says his services have helped to save many patients' lives. Schueler's advocacy business focuses specifically on providing targeted clinical research services for patients with cancer.

Schueler spent decades traveling through the developing world as a medical device expert working for UNICEF and the World Health Organization, specializing in maternal health. But after being diagnosed with and recovering from advanced lymphoma in the mid-1990s, Schueler wanted to put his research skills to work helping struggling patients. He started his advocacy business with no knowledge of appropriate fees or other advocates in the field.

More than a decade later, Schueler is viewed as an “elder statesman in the field,” according to other advocates. A founding member of NAHAC, Schueler authored the organization's code of ethics. He estimates he has worked with roughly 2,000 patients—some only once and others for extended periods of time. Schueler charges $500 for an initial consultation, $235 an hour for additional services and a $7,000 flat fee for a full year of 24-hour support and research.

For those rates, clients receive Schueler's guidance on which clinical trials might be best-suited for them, which sites and physicians specialize in a client's type of cancer, and what kinds of alternative treatments are available.

“Patients come to me when they have gone through the conventional menu of treatment options and they want to know what else is available,” Schueler says.

And while Schueler's background in medical devices sets him apart from many advocates, those joining the field come from a wide range of professions. Some such as Dr. Sima Kahn, founder of Healthcare Advocacy Partners, Seattle, are physicians. Kahn spent more than 25 years working as an obstetrician/ gynecologist before starting her own advocacy business in 2009.

“What I found is that the things I loved doing the most—helping people get what they need, helping them understand their care—were being progressively cut from medical practice because we had to see so many patients,” Kahn says.

Kahn completed Smith's credentialing program and became a full-time advocate. She charges $200 an hour for her services.

“In some ways, the transition from physician to advocate has been difficult,” she says. “As a physician, your time is so structured and controlled. What I'm doing now is not as clear, but it is wonderful.”

Not surprisingly, the cost of these services put them far out of reach for many patients of limited means. Some advocates seek to address that issue by doing some pro-bono work or by referring low-income patients to organizations that provide free services.

Laura Weil, head of the graduate health advocacy program at Sarah Lawrence College, Bronxville, N.Y., says the unequal access to advocates is a concern. “I find it very troubling because I have a focus on fixing the system, not putting patient advocate Band-Aids on it,” she says.

Sarah Lawrence College offers a master's degree in health advocacy that attracts some who are interested in private patient advocacy, Weil says, but it also draws many who want to work at not-for-profit organizations and at the policy level.

“Private case-based patient advocates intersect only with those people who can afford to pay for it,” she adds. “That really widens the chasm between the haves and the have-nots, and that's an issue to those of us who already see the healthcare system as very unequal.”

One option for low-income patients is the approach offered at Health Advocacy Solutions, a Portland, Ore.-based not-for-profit charitable organization that provides services on a sliding scale or for free. Founded in 2006 by Jason McNichol, a sociologist with experience in the not-for-profit sector, the organizations uses donations and volunteers to cover fees for about 50 patients each month.

Health Advocacy Solutions also works on the policy side to address issues that make advocates necessary in the first place, McNichol says. “As a sociologist, I saw that many healthcare disparities were not consequences of access to care, but instead how well patients could navigate the system,” he explains. “We quickly realized that many of these patients who needed these services the most were the least able to pay.”

McNichol argues that although the services of private advocates are not financially feasible for many patients, there is still room for everyone at the table. Health Advocacy Solutions maintains good relationships with its private colleagues, he says, and they often send referrals his way.

“The profession is stronger with both for-profit and not-for-profit advocates in the community,” he says.

It's an opinion shared by Diane Pinakiewicz, president of the National Patient Safety Foundation, based in Boston. The NPSF's view, Pinakiewicz says, is that all patients should have some kind of advocate during an encounter with the healthcare system. Those can include hospital advocates, private advocates, family members and friends, she says.

There's nothing wrong with availing oneself of private help, she adds, as long as it's a reputable business.

“From my perspective, the main goal is to make sure every patient has someone who is helping then through the system,” Pinakiewicz says. “I'm all for that happening in whatever way it can.”