Patient Navigator

On May 7, 2013 the American College of Obstetricians and Gynecologists released its comments on the results of a study of the adverse effects of Pitocin on newborns.  I can only hope that the doctors who routinely prescribe this drug for all their laboring moms actually pay attention, and try to practice evidence-based medicine.

The ACOG news release states that “Researchers say this is the first study of its kind to present data on the adverse effects of Pitocin use on newborns.

Are we seriously only now looking at the potential adverse reaction for the babies?  When a huge percentage of moms get induced and even more have their labor augmented with pitocin, shouldn’t we have looked at the effect on babies BEFORE we started using it routinely?

The findings of the study cannot possibly be brand new information.  Drugs.com currently states: “General side effects have included low Apgar scores at 5 minutes. Fetal death has been reported.” “Nervous system side effects… have included neonatal seizures and permanent CNS or brain damage has been reported.” “Hepatic side effects have included neonatal jaundice.”  “Overdosage with oxytocin… can lead to… variable deceleration of fetal heart, fetal hypoxia, hypercapnia, perinatal hepatic necrosis or death.”

How many mothers were told these potential side effects for their babies when having an informed consent conversation about administration of synthetic oxytocin?  Or were they told it’s for the good of your baby and it’s perfectly safe?  Do their doctors even know the risks of the drugs they are routinely administering or are they knowingly lying about safety?  How many moms have been told “pitocin is the same as the oxytocin your body makes?”

Pitocin is routinely administered in high doses that would be IMPOSSIBLE for the body to make on its own.  And it is forced into the bloodstream in a continuous flood, as opposed to the ebb and flow of the hormone that the body naturally synthesizes.

As a result, the mom’s own endocrine system is overwhelmed and prevented from synthesizing its own endorphins and its own oxytocin.  Synthetic oxytocin (Pitocin) blocks the receptors and prevents the body’s own oxytocin from doing its job of changing the neurological pathways of the brain so that you bond with the people around you.  Babies’ receptors will also be blocked interfering with the baby’s brain’s development of the ability to interact and bond with others.

Clearly, the short term negative effects on the baby of the routine administration of pitocin are documented.

But what about the long term effects?  What might result from interfering with the neurological and endocrine processes in the vulnerable and intense perinatal period?  When the brain and body are undergoing massive programming changes, isn’t it possible that, by chemically interfering with these changes, we are causing long-term disruptions? Is it just coincidence that the dramatic increase in autism spectrum diagnoses parallels the dramatic increase of routine pitocin administrations in the majority of births in the US?  There is a conspicuous absence of any mention of long-term effects both in the study and in the ACOG comments.

Why does our socio-medico culture accept the development of a drug, assume it’s safe without fully looking into short-term or long-term implications, and then say whoops sorry, we shouldn’t have done that, when it becomes clear that there are negative outcomes?

The doctors and drug manufacturers are not the ones who suffer the consequences.  The patients and their families are the ones who pay the price of just assuming that it is okay to use a drug, especially on the most vulnerable of our population, without really checking to make sure that it is, in fact, safe.

Unfortunately, the ACOG release falls short of criticizing this practice, stating only that: “The analysis suggests that [synthetic] oxytocin use may not be as safe as once thought and that proper indications for its use should be documented for further study.”

ACOG Release on the Study on the Effects of Pitocin on Newborns

http://www.acog.org/About_ACOG/News_Room/News_Releases/2013/Study_Finds_Adverse_Effects_of_Pitocin_in_Newborns#.UYkdLeDO_9s.facebook

Maternal Side Effects of Pitocin

http://www.drugs.com/sfx/pitocin-side-effects.html

Submitted by Guest Editor Debora Harvey, Patient Navigator LLC

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Connections to healthcare are critical for people managing a serious illness or condition. Often patients are unable to drive themselves to and/or from medical appointments. Many people depend on family, friends and neighbors for rides, but what if these resources are not always available? Transportation is a key part of a treatment plan.

Easter Seals Project ACTION and the American Medical Association have a new pocket guide for patients considering transportation options before or after a medical procedure.

The Planning for Transportation After Medical Services pocket guide is available in English and Spanish. It provides information and tips about planning for transportation, the types of transportation available, considering how your health status affects the type of transportation you choose, and also includes a place for notes and phone numbers.

You can download or order print copies of the brochure from the American Medical Association webpage for free.

Guest Editor:  Lucinda Shannon, Easter Seals

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With healthcare costs skyrocketing, there are some who are getting creative in helping to make care more affordable, especially for those in financial need. One way physicians are doing that: seeing patients via Skype.

One doctor in Baton Rouge, Louisiana, Dr. Lee Montgomery, uses it for follow-ups or to evaluate minor problems. He says it is not appropriate in a situation where a patient requires a diagnosis, and certainly in any emergency situation. But it’s one way he enables some of his patients, who otherwise couldn’t afford it,  to access his care because it costs a fraction of the price of a regular office visit. If you pay $30 per month for his membership program, Skype visits cost just $10.

But Skype isn’t all about reducing costs. Dr. Spero Theodorou, a plastic surgeon from New York, uses it as a screening tool to determine whether potential patients are likely to be good candidates for a cosmetic procedure called SmartLipo. He uses it not to reduce costs, but as a time-saving tool for his patients.

Dr. Loren Olson, a psychiatrist from Iowa, practices at six different sites, including some which are inner city. He estimates that approximately 50% of patients with serious mental illness are not accessing healthcare services, so Skype visits present a new opportunity for at least some of those patients to get the care they need. Skype visits aren’t as intimate as in-person consults, but for some patients, the alternative to Skype visits is not visiting at all. And he once had a patient inadvertently ask for a glass of water during a Skype session, so in his experience, patients can become as immersed through Skype as in-person.

Right now, most insurance carriers won’t pay for Skype visits, but that may change in the future.

Submitted by Dave Schlosser, Patient Navigator LLC

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Since I first wrote on this topic in April 2009, interest in patient advocacy and navigation continues to grow. I receive frequent inquiries about training and job opportunities and will try to address them here.

Patient navigation and advocacy as an emerging profession are gaining attention, both in the media and in the popular lexicon, because what we do fills in so many gaps in the current American health care system.

The names for this work may vary (patient advocate, navigator, health care advocate or consultant, medical advocate) but the basic idea is the same.  We work with patients and families to help them at many points along the health care continuum:  disease research, insurance problems, finding doctors, understanding treatment and care options, accompanying them to visits, serving as coach and quarterback of their health care team, working with family members and caregivers, mobilizing resources, managing medical paperwork and almost anything else you can think of.

Not every advocate does all of these things, and there is no single business model or list of services.  Some advocates only work with senior citizens, others only with cancer patients or others only to solve medical billing problems.  It depends entirely on the individual’s business and practice.

Key Developments

In August 2009, the National Association of Healthcare Advocacy Consultants NAHAC was founded by Joanna Smith in Berkeley, California because it made sense to form a professional association for this new type of work.  I was a founding member of NAHAC, its first Vice President and since March 2012 I have been the President of NAHAC. The Association seeks to professionalize the emerging private patient advocate industry and to educate consumers. NAHAC is a non-profit educational association.  Members must abide by our Code of Ethics, which in August 2012 was cited as a model by the American Medical Association. The Association held national conferences in 2009, 2010 and 2011; our fourth meeting will be in November 2012 in Boston.  This year’s theme is “The Leading Edge of Reform:  Roles and Goals for Healthcare Advocates.”

NAHAC membership is open to those who are interested in the field of healthcare advocacy.  They may be prospective advocates, medical professionals, consumer advocates, academicians, researchers or people involved in policy and legislative efforts.  I encourage prospective advocates to join NAHAC to learn and to become part of our growing network.

Another key development is a company called AdvoConnection,  founded by Trisha Torrey in 2009 to create a national directory of patient advocates and a way for consumers to find them.  Since then, AdvoConnection has added many marketing and business development services for its members.  Trisha has written extensively on the business side of becoming an advocate.  Her recent summary of the evolving work of advocates is useful and contains other links to learn more.  She offers a membership for folks considering this profession.

The Patient Protection and Affordable Care Act (health care reform law signed in 2010) is now accelerating growth of both the advocacy profession and advocacy education because it mandates new consumer protection initiatives and allocates new funding to support ombudsmen and navigators.  State and Federal health care exchanges that be launched in 2014 include provisions for navigators to help consumers evaluate, choose and enroll in health insurance policies.

The Landscape

But to those just hearing about patient navigation or advocacy for the first time (and for many of you realizing that what you’ve been doing all these years has now been given a name),  I want to paint a brief picture of the larger “navigator” landscape in which advocates work.

Hospitals

An increasing number of hospitals in the U.S. and Canada employ navigators to help patients manage their hospital stays.  Hospitals usually require nursing degrees and frequently work with breast cancer patients (because there is funding available from private foundations such as Susan G. Komen).

In most cases, these hospital-based navigators primarily manage the patient’s needs during the hospital stay and discharge planning and they work for the hospital.  They usually also only refer to services within the hospital system that employs them.  This is in contrast with private navigators, who work for their client and stay with them well beyond a hospital visit.

Organizations

The American Cancer Society offer cancer patient navigators in some cities, among other programs. 

The National Institutes of Health, National Cancer Institute is funding several patient navigator pilot projects across the U.S. in under-served and minority areas and trains navigators working in those projects.

Much of this work is based on the model set by the pioneer in breast cancer patient navigation  Dr. Harold Freeman in Harlem to develop community-based navigator programs.  His program offers training to some individuals, groups and non-profits seeking to work to narrow disparities in access to cancer care.

The Patient Advocate Foundation provides free services to some individuals and is also a leading voice on the national health policy stage.

Many national disease-specific advocacy organizations provide some advocacy help.

Training, Certification and Credentials

Patient navigation/advocacy is a new undertaking that has really gained traction over the past three years.

The key point is that there is no nationally recognized license, credential or certification at this point in time.  Patient advocates are not regulated by states nor is there any credentialing requirement for someone to say they are a patient advocate or navigator.  If you are considering a certificate or training program, please read the important article posted here that goes into more detail.

That being said, there are plenty of organizations and institutions offering some kind of patient advocacy certificate or credential.  Most have sprung up recently. Here is the most complete training program list of which I am aware compiled by AdvoConnection.

I am listing some of these programs but I have no recommendation or insight on most of them.

The University of Wisconsin at Madison Center for Patient Partnerships  Madison offers classroom, clinical and online education in consumer health advocacy.  I am personally familiar with this program and recommend it highly.  The Center also provides free advocacy services locally.

The University of Miami offers the nine-month Alfus Patient Advocacy Online Certificate Program.

The oldest formal health advocacy program in the United States, the Sarah Lawrence College Master’s Program prepares students for a variety of types of advocacy careers, including assisting individuals, focusing on community health, or working in health policy.

Dr. Harold Freeman’s program in New York City offers training to some individuals, groups and non-profits seeking to work to narrow disparities in access to cancer care.

The Integrative Medical Clinic Foundation and Sonoma State University in California offer a Patient Navigator Certificate Program with an Integrative Health specialty.

I have personally taken the credentialing program offered through the Society of Certified Senior Advisors and recommend it highly.  For anyone planning to work with the elderly in any capacity, this training  will help you immensely.

Healthcare Liaison offers training workshops for how to become a patient advocate as well as a full credentialing program for medically trained individuals.

Locally, in the Washington, D.C. area, the Smith Farm Center for the Healing Arts offers community patient navigation training for integrative cancer care.

What Does It Take To Do This Work?

Most of us who do this work come to it through our own experiences dealing with the health care or elder care system (whether as a patient, caregiver, nurse, social worker, etc.)  In most cases, there is no specific background or education that is required, except for clinically-based positions.  I have found that a passion for helping others, good research, communication, interpersonal and organizational skills as well as the ability to be creative in finding resources and solving problems are what it takes.

However, earning a living from this work is a different story.   Patient advocate Trisha Torrey wrote an excellent article about job prospects for patient navigators/advocates.  My basic advice to folks is that unless you have another source of income, don’t expect to earn a living wage quickly if you set out on your own.

For more on setting up an advocacy business, you can start here.

How To Join Our Efforts Now

In order to connect folks throughout the U.S. who are interested in this field, I have formed a virtual “Patient Navigator” working group through LinkedIn, the professional  networking site.

Please consider joining my LinkedIn group as we collaborate to build this profession.  Just go to LinkedIn to set up a profile and then ask to join the Patient Navigator group. Please include an explanation of why you’d like to join the group.  This way I can get to know allies around the country and hopefully grow our network and collaboration.  It’s a good way for everyone to make contacts.

Please add your comments or additional information to this post!

Thank you.

Elisabeth Russell, Founder and President, Patient Navigator, LLC

erussell@patientnavigator.com

August 27, 2012

P.S.  If you are interested in how I became a navigator as a second career, you can read a March 2011 profile in MORE magazine that offers more information both about my own journey and about patient navigation generally.  A radio and press interview I’ve given are posted on the Patient Navigator homepage to further elaborate on patient navigation as a new field offering services on many levels.  In addition, there are other media references that can help you learn more about patient navigation.

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The bewildering sensation of too much information, yet not enough knowledge to use it, is the reality for many people faced with a serious illness or condition.  How do you decide what to do?  Should you do exactly what the doctor says?  What about all that stuff on the Internet?  Are the books at the library or bookstore up to date with the information they offer?  How relevant is that clinical study you saw referenced in an article?  Is the advice from your cousin’s friend who had a related condition worth considering?

Making medical decisions is very difficult for most people, including those already in health care professions.  Sifting through the data, recommendations and opinions can be overwhelming.  That, coupled with the feeling that we don’t dare make the wrong decision, leaves most of us struggling and scared.

In Your Medical Mind, Dr. Groopman and Dr. Hartzband state that the answer to medical decision making does not lie in more information and more opinions, but in understanding the influences and biases hidden in the patient’s own mind.  Their position is that deciding on a course of treatment is infinitely more complex than a simple clinical or economic decision.

When struggling to make a decision to begin a new medication, to undergo surgery, to start a different type of therapy, the first source of information is the doctor that recommends it.  Armed with this data, most of us then turn to the Internet and search all the information that comes up when we type in the relevant words in a search engine.

Then our family, friends and neighbors chime in with anecdotes from their experiences.  All of this gets filtered though our own experiences and preferences.  No two people with make the same decision on medical treatment with the same degree of comfort.  As Dr. Groopman says, “the path to maintaining or regaining heath is not the same for everyone.”

Some people are minimalists, who prefer to keep all medical intervention to a minimum and work with their body’s natural immune and healing processes.  Others are maximalists, who want to jump in with everything that modern medicine has in its arsenal.

Some are believers, who approach their options convinced that the right solution for them is out there somewhere.  Others are doubters, who are skeptical of all treatment options.  Most people fall somewhere on the spectrum of these extremes.  Understanding where your mind-set is regarding medical treatment is useful in considering your options.

Individual preferences about risks and benefits, about quality of life during and after treatment matter tremendously.  The practice of medicine is, and always will be, an art, not an exact science.

Click here for a radio interview on this topic with Drs. Groopman and Hartzband.

For guidance in evaluating medical options, see Patient Navigator’s Roadmaps:

Evaluate Health Information on the Internet

Develop Your Treatment Plan

Guest Editor:  Debora Harvey, Patient Navigator LLC

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I have been reading “The Hippocratic Myth” by M. Gregg Bloche  MD.   As a good book always does, it has given me a great deal to ponder at odd moments during the day.

While reading, I found myself engaged in internal debate regarding the obligations inherent in the doctor/patient relationship.  Is the nature of this important relationship one between equals, between a superior and inferior?  A relationship of trust, one of dependency, or simply a contract between a consumer and the person hired to perform a service?

The fact that the answers to the question are “all, some and none of the above,” depending on the situation, makes defining the roles of doctor and patient very difficult.  However, in all cases, physicians and patients owe each other certain basic obligations.  My own personal list of these duties is as follows:

Doctors owe Patients

• Respect as a fellow human.  A patient is not “the cardiac case in Room 3”.  The doctor is not omniscient or omnipotent and should never act as if she is.
• Respect for their time. Doctors have limited time to treat patients; people do understand this and are usually willing to wait a reasonable amount of time.  However, after an hour and a half in the waiting room with no explanation, a patient is clearly not being respected.
• Read the chart before entering the room. This simple act can prevent many misunderstandings and clinical confusions.
• Keep the patient’s information private and confidential.
• Provide evidence-based care. Doctors owe it to their patients to stay current on research and clinical trial results in order to provide the best care available, even when the new evidence contradicts what the doctor learned in medical school.
• Respect informed decision-making. The doctor can and should provide his absolute best medical opinion.  However, the patient is the ultimate decision-maker and all physicians should support the goal of having well-informed patients making the best decisions for themselves.

Patients owe Doctors

• Honesty. Doctors cannot provide effective care if a patient fails to disclose aspects relevant to their condition and treatment options
• Respect for their time. This one works both ways.  A respectful patient will be prepared for his appointment and have a concise list of questions or issues to discuss, not spend precious minutes trying to remember something he thought about the night before.
• Prompt payment.  Increasingly, doctors are getting squeezed between patients’ own economic challenges, the insurance companies’ failure to provide coverage due to some glitch or technicality.  Physicians are carrying this financial burden, sometimes for a year or more.
• Adherence to prescribed treatment. The patient has an obligation to adhere to a treatment as it is prescribed by the doctor, provided that the treatment is not making things worse, and that the prescribing physician is available for communication regarding the results and possible side effects of the treatment, and open to adjusting the treatment if the patient is not responding well.

By recognizing and being mindful of these obligations and responsibilities to each other, the physician/patient relationship would proceed more smoothly and easily that we often encounter.

Guest Editor:  Debora Harvey, Patient Navigator LLC

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If you are currently expecting a child or are planning to in the future, you have the opportunity to preserve a potential lifesaver for not only the child to be born, but also your other kids and maybe even their mother. And it’s normally discarded in the trash. What is it? Blood from your baby’s umbilical cord, when properly collected and preserved immediately after delivery,  contains viable stem cells that can later transform into a variety of different cell types. Transplanted into a sibling, mother, or the baby years later, the stem cells can be a treatment for a variety of diseases, including various cancers, bone marrow failures, blood and metabolic disorders, and immunodeficiencies. It is also being tested in treatments for diabetes, cerebral palsy, and brain injury.

After collection at birth, cord blood (CB) is shipped to a CB bank where it is processed, which usually costs $1500-$2500. Thereafter, storage fees are approximately $150 annually, a cost sometimes guaranteed not to rise for 20-25 years. These expenses are typically not covered by insurance, unless someone currently covered by your policy (like another child) has an anticipated need for CB because they have been diagnosed with an illness treatable with CB.

You might also be able to donate the CB to a public bank, available for others to use, at no cost in certain hospitals. If your hospital does not participate, you may still be able to donate by contacting one of the public banks directly.

Unfortunately, CB is not a panacea. A baby’s own CB cannot be used to treat certain cancers because it usually contains the same genetic predisposition that caused the cancer. And the odds that you will ever utilize the CB are remote: the most commonly quoted odds are 1 in 2,700, or 0.04%, and some calculate the odds as much less. To put that in perspective, that’s about double the chance you might be killed in a car accident in any given year. But you can cut your risk of being killed by half, back down to the odds you’d use CB, by simply using a seatbelt, and you don’t think twice about driving your car. And the chances of winning the lottery? 1 in 15 million, or 0.000007%. Yet some of us still think we can beat those odds, at least occasionally.

Many professional organizations advocate donating CB to public banks for use by the public at large, much like blood banks. But due to the expense and the odds you could ever utilize privately banked CB, many of these same organizations, including the American Medical Association, the American Academy of Pediatrics, American Congress of Obstetricians and Gynecologists, and perhaps most importantly, the American Society for Blood and Marrow Transplantation (who members are physicians who would likely actually treat someone with CB) still do not recommend retrieving CB unless a family member has a disease that can be potentially treated with it.

So what should you do? Electing to privately store CB is much like buying an insurance policy. If you ever need it, you’ll be glad you did. If your child is that 1 in 2,700, it doesn’t matter what the odds are. You just have to decide if a few grand is worth that peace of mind.

Guest Editor:  Dave Schlosser, Patient Navigator LLC

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Doesn’t it seem like these days you can do lots of things virtually? We have modern developments like virtual assistants, virtual environments, and virtual machines, but does watching the latest virtual reality show really take discomfort and stress out of our lives?

Well, now there’s a virtual development that can: a virtual colonoscopy. No, unfortunately, it can’t be done with your smart phone or even from the comfort of your couch – yet. But if the thought of a 6-foot tube going “where no man has gone before” makes you skip this important cancer screening tool altogether for the second leading cause of cancer death in the U.S., you will be happy to know you may soon have a more comfortable alternative.

A virtual colonoscopy uses computerized tomographic (CT) technology to acquire a 3D image of the areas normally examined in a traditional colonoscopy. Although you must still endure the repeated trips to the bathroom to cleanse your bowels and a carbon dioxide gas enema must be administered using a small tip to inflate the colon, no long tube or sedation are required.

While a 2008 study demonstrated the virtual technique was just as effective as the traditional, experts were still unsure of its ability to detect problems in older patients, who typically have an increased number of polyps. However, in a new study led by a physician at the Mayo Clinic’s facility in Phoenix and published in the journal Radiology, it appears that those fears are now unfounded. The investigators determined that the virtual technique was just as effective for patients over age 65 as those aged 50-65.

With this additional validation, the hope is that the virtual technique will ultimately lead more people to getting screened, as it accommodates not only those who are overly anxious about the traditional procedure, but also those who have a bowel obstruction or use anti-coagulant drugs.

So talk to your doctor, because now you have no excuse to get screened!

Guest Editor:  Dave Schlosser, Patient Navigator LLC

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If you ever find yourself  needing an organ transplant, you probably will consider yourself very lucky to find a donor match. Unfortunately, many folks in those shoes aren’t so fortunate, and die before a matching donor organ is identified. So clearly, anything that can be done to cast a greater net over potentially matching donor organs is a very welcome development.

Even if you do find a match, you will likely be faced with taking immunosuppressant drugs for the rest of your life to combat organ rejection, which in turn increases your susceptibility to a variety of complications, including infection, cancer, diabetes, and cardiovascular disease. And even then, your body may still reject your new organ.

But in what is hailed as a potential game changer in transplantation science, a small preliminary study suggests that both issues can potentially be addressed by transplanting stem cells from the organ donor to the recipient.

The study, recently published in journal Science Translational Medicine, tested the ability of donor stem cells to trick the recipient’s immune system into treating their new kidney, received from the same donor, as their own, ultimately saving both the organ from rejection and the patient from having to take immunosuppressants.

All of the 8 patients in the study received kidneys that were “less than perfect” matches; that is not necessarily unusual, but they faced a major uphill battle in preventing rejection. But what is unusual is that 2 days after the kidney transplant, they also received an infusion of immune cells bioengineered from the donor. And amazingly, 5 of those patients were able to discontinue their use of immunosuppressants completely after a year.

Furthermore, they show no signs of organ rejection during follow-ups 6 to 20 months after stopping those drugs.

While experts find this a very enticing development, it is not yet clear if these patients’ acceptance of their new organs will translate into a lack of early warning capabilities to detect other foreign bodies, like infections or malignancies. Furthermore, it is also a very small pilot study, and much follow-up study is needed. But 2 pioneering transplant surgeons at Massachusetts General Hospital say it “may potentially have an enormous, paradigm-shifting impact on solid-organ transplantation.” That’s great news.

Guest editor:  Dave Schlosser, Patient Navigator LLC

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According to an analysis by the IMS Institute for Healthcare Informatics, about 1% of the privately insured population drives about 25% of overall health costs. Their total medical bills average approximately $100,000 per year for hospital stays, prescriptions, doctor and ER visits, etc. As you might expect, many of these folks are in the final stages of life, but many of them simply have chronic health issues like high blood pressure or diabetes. People with chronic conditions filled 78% of all prescriptions, and costs incurred through outpatient care actually comprises the largest share of overall spending.

As an example, the annual cost of effectively managing diabetes typically averages about $12,000, but can quickly approach $102,000 if it rages out of control and the patient experiences complications such as heart attack, stroke, poor vision, or limb amputation.

Right now, many of these chronic issues are considered “pre-existing conditions”, and can serve as the basis for an insurer to deny coverage. But starting in 2014, when the new federal health care law is expected to go into effect, insurers will no longer be able to do this. Ideally, this ultimately gives insurers incentive to make sure their current customers do not reach that 1%, and they are starting to implement ways to do that, such as providing additional means to help manage chronic conditions and provide wellness incentives. But they are also evaluating different ways of compensating physicians, such as paying them more to coordinate care and developing ways for them to share in savings achieved when a patient avoids a hospital admission through better treatment.

Regardless of what may happen over the next few years, however, one thing is clear: the current model of health care insurance is changing.

Guest Editor:  Dave Schlosser, Patien Navigator LLC

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