Ever wish you had a close friend or family member who was also a physician or a nurse—someone who could help you deal with an anxiety-provoking diagnosis, make a treatment decision, or untangle an insurance mess? Private health care advocacy is a nascent profession whose services are becoming increasingly available to individuals directly as well as through employers and unions. And like all valuable services, this extremely personal one comes at a price.

Private health advocacy overlaps with the field of concierge medicine, as it can be exclusively expensive, but it also can take the form of a basic coping mechanism for those who need help navigating a complex and bureaucratic health care system. Moreover, it offers medical professionals a way to provide thorough, personal care for patients while avoiding the frustrations and time restrictions imposed by insurance reimbursement schemes.

The Advocates

Howard L. Kramer, MD, PhD, President and founder of the new health advocacy firm Kramer Clinical Consulting, LLC, in North Andover, MA, is a Harvard educated, former hospital staff physician.“When I started practice as a physician, I was from the Marcus Welby generation. I liked to talk to my patients, get to know them, and become a friend as well as a physician.” Kramer said he became frustrated as pressure mounted for him to see more and more patients in less and less time. “I left practice and got a masters’ degree in finance, thinking naively that I might have some insight into how the system could be improved. Ultimately, I started this consulting practice, ”he said.

Kramer sees his role as that of a teacher, explaining and interpreting medical information to someone without a background in the field. “I have been a teacher throughout most of my professional life, having taught chemistry, physics, math, and medicine, and I derive great satisfaction from making difficult concepts understandable,” he said.

Like many health advocates, Kramer began by providing his services on a pro bono basis for friends and family around the country. Now that he charges for his services, Kramer’s business is considered a medical practice, and he is limited to practicing in Massachusetts where he is licensed and carries malpractice insurance. He is not limited as to where he can send his patients, however, should the best quality care for their medical situation be out-of-state.

“Everyone needs a health advocate,” said Betty Long, RN, MHA, President and founder of Guardian Nurses Healthcare Advocates in Flourtown, PA. “And all the people working in the health care industry understand this. Managing a health problem is stressful and emotional; it is not the best time to have to learn how to deal with a complicated bureaucracy. Most patients just want someone to take their hand and say, okay, here we go.” Before founding Guardian Nurses in 2003, Long worked as a Hospital Supervisor. She was often called to patients’ rooms to explain their medical situations thoroughly and to help their families understand what was transpiring.

 “Everyone needs a health advocate,” said Betty Long, RN, MHA, President and founder of Guardian Nurses Healthcare Advocates in Flourtown, PA. “And all the people working in the health care industry understand this. Managing a health problem is stressful and emotional; it is not the best time to have to learn how to deal with a complicated bureaucracy. Most patients just want someone to take their hand and say, okay, here we go.” Before founding Guardian Nurses in 2003, Long worked as a Hospital Supervisor. She was often called to patients’ rooms to explain their medical situations thoroughly and to help their families understand what was transpiring.

“Much of Guardian Nurses’ support comes through talking a patient through the decision-making process,” Long said. “A patient may come to us having been told aggressive treatment is needed. Through our partnership with the patient, we get a dialogue going and break down the complicated situation into manageable pieces so that the patient is able to make the treatment decision. As advocates, we can do this without being emotionally involved. We can advise patients which questions to ask their physician, we can communicate directly with the physician, and we can even go with the patient to the appointment.”

Joanna Smith, LCSW, MPH, founded Healthcare Liaison, Inc., in Berkeley, CA, in 2005.The firm is a social entrepreneurship and as such donates a percentage of its profits to charities that fund microloans. Smith’s experience as a medical social worker and hospital discharge planner prepared her for her role as a “complex medical case manager.” Smith wants to see professional standards become established for the field, which is as yet unregulated. She has created a health advocacy credentialing program For candidates who already have medical training. “The current group includes a pharmacist, a physician, registered nurses, and a physician’s assistant,” she said. “Students are led through a year of a consultation model for medical professionals. At the end, there is an examination, and after passing it, they can say they are credentialed by Healthcare Liaison.” Smith is also working with a state representative to develop a California licensing program. “When there are no other standards, this is how it starts,” she explained. “Professions begin by credentialing themselves.”

Like Guardian Nurses, Healthcare Liaison uses a team style approach to health care advocacy. A physician, pharmacist, physician’s assistant, registered nurses, and an insurance specialist collaborate with Smith to respond to a client’s particular need. Smith accompanies patients to exams on a case-by-case basis and follows up with physicians after exams or treatments. She follows the patient through discharge and home care, making sure that the plan is working. “If it isn’t, I create a new plan,” she said.

How It Works and How Much It Costs

An individual’s relationship with an advocate usually begins with an initial consultation in person or by phone. Some advocates may offer a free initial consultation while others may charge a fee. The next step may be a written contract detailing the fees and parameters of the advocacy relationship. How the partnership proceeds depends on the patient’s reason for hiring an advocate.

Services offered by private health advocates vary but may include the following:

• Review of medical records and any specific health or wellness concerns
• Research of diagnosis(es) and treatment options
• Identification of medical centers of excellence for second opinions
• Patient education
• Creation of a preventive wellness plan
• Help with insurance claims and billing errors
• Help with locating eldercare services
• Appointment scheduling and accompaniment
• Wellness coaching
• Help with administration of health plans (for employers)

Private health care advocates do not treat patients directly, make diagnoses, prescribe medications, or perform physical exams. In addition, pricing plans may be annual, hourly, or based on the number of employees in a client company. The cost of advocacy services can be as little as $1 a day (Health Proponent) and as much as $100,000 a year (Pinnacle Care) [see Table 1 below].

Kramer said his consulting practice caters to the middle class and above.“People do spend comparable amounts of money for visits with physicians,” he said. “This is a downside to the profession. Those with limited resources could use this kind of help even more than those who can afford it. If the practice succeeds, it will be extended to include a non-profit division and serve a wider range of people.”

Table 1: Cost of Health Care Advocacy Service

Health Advocacy Firm	Cost of Health Care Advocacy Service
Guardian Nurses	$145–$200/hour, depending on the number of hours purchased
Health Advocate	$1.25–$4.9/employee/month (group plan, includes parents and in-laws)
Health Proponent	$365/year for family coverage (includes parents and in-laws)
Healthcare Liaison	$150/hour.
Kramer Clinical Consulting	$150/hour (+$300 for initial 2-hour consultation) or negotiated fee in advance, depending on the situation
PinnacleCare	$7,000/year (+ $3,000 set-up fee) to as much as $100,000/year for a highly customized level of care

 

For those who cannot afford a private health care advocate, Kramer recommends the free advocacy services offered by national non profit organizations.“A patient can contact the American Cancer Society and communicate with a trained oncology nurse, for example. Non-profits can put patients in touch with support groups and answer direct questions about specific diagnoses,” Kramer said. He is also an American Cancer Society volunteer.

One Patient’s Experience

Dave Blurton, a marine transmission mechanic in his 60s, was referred to Guardian Nurses by his company’s Human Resources Manager in February after a 5-year struggle to diagnose a nagging pain in his right thigh. Guardian Nurses’ services were paid by Blurton’s employer.

Long began working with Blurton, who had been told he would have to live with the chronic pain. “I cannot put Betty on a high enough pedestal,” Blurton said. Blurton’s physician had prescribed pain medication and had given up trying to find the source of the problem. “Betty reviewed my medical records and referred me to Jefferson Hospital in Philadelphia. She not only did research to find the best physicians for my condition,

she went with me to the appointments and answered the physicians’ questions about my medical history on the spot. She called to remind me about appointments and then followed up afterward. The physicians to whom she referred me have found that my pain is being caused by a build-up of scar tissue. I may be able to have an operation to relieve the pain. This has given me hope,” Blurton said.

Private Health Advisory

PinnacleCare, founded in 2002 and with offices in New York, Baltimore, Chicago, Los Angeles, Florida, London, and Madrid, caters to an elite clientele. “Our members are among the most discriminating and successful individuals, families, executives, and corporations in the world, and they genuinely value and benefit from the exceptional service, access, and guidance we provide,” said Miles Varn, MD, Chief Medical Officer for PinnacleCare

PinnacleCare’s annual membership fees start at $7,000 for individuals and $10,000 for families. Clients who join to cope with a serious or life-threatening illness can buy a 6-month membership for $25,000, plus a one-time set-up fee of $5,000. What makes PinnacleCare worth the price? “We are in the relationship business,” Varn said. “Our advocates get to know our members, including their needs, wants, and wishes, in a personal, individualized way. We establish a baseline of their current physical condition and then collect, analyze, and organize their medical records so that we can understand their medical risk factors, risk tolerance, and fears. We then create an annual plan that reflects these medical needs, goals, and wishes.”

PinnacleCare, however, offers services that reach beyond the norm. “If a member’s goal is to lose 20 pounds, we might bring in a fitness trainer, a nutritionist, and a chef to teach him how to cook differently,” Varn explained. “There’s a relationship there that extends through the year, beyond identifying needs, wishes, and goals, to an implementation plan. An advocate works with the family throughout the year to ensure accountability or to ensure their needs are met.” PinnacleCare touts its distinguished medical advisory board comprised of experts located throughout the country  who direct members to the highest available level of care. Although Varn said PinnacleCare does not pull strings to put its members ahead of others waiting for tests or procedures, its advocates do take advantage of scheduling inefficiencies, such as cancellations, to get members the best possible spot in line.

As the typical PinnacleCare member is also a frequent traveler, world wide, 24/7 access not only to an advocate but also to an emergency physician makes the service worth the fees. “It is not only care, it is protection in all situations,” Varn said.

 

A Boon to Employers

In addition to helping patients and physicians, private health advocacy tangibly benefits employers, according to industry giant Health Advocate, a national advocacy firm with 240 employees based in Plymouth Meeting, PA. Health Advocate provides an array of employee health advocacy services to employers on a per-employee-per-month price plan. “Health Advocate increases