When Serious Illness Strikes – Four Things You Must Know

My journey through the complexities of the American medical system began in 1998 when my 2-year old daughter was diagnosed with an inoperable brainstem tumor.  We were immediately forced to make life-and-death decisions during a time of intense fear and vulnerability, with no experience upon which to draw.  I felt adrift in an unknown universe without a lifeline.

Any serious diagnosis thrusts patients and their families into an unfamiliar world of doctors, tests and treatment options.  They must simultaneously find information, make decisions under pressure, seek the best medical care, cope with family changes, and deal with insurance, financial, employment, caregiver or school issues.

Here are my suggestions as you begin the journey through illness.

1. Get smart fast.

Become a savvy, health literate advocate. Gather good information using only credible sources.  National advocacy groups often have excellent information, such as the Alzheimer’s Association.  For cancer research, start with the National Cancer Institute, and the American Society of Clinical Oncology. An excellent site is UptoDate, a clinical database with many free patient articles.  The National Library of Medicine offers PubMed for academic research, articles and much more.

Beware of Dr. Google.  When evaluating health information on the internet, think about: Who operates the website? Who is responsible for the website’s content? Who funds the website? How does the website maintain your privacy? Where do they get their information? How current is the information on the website? Does the website have a linking policy? What does your doctor say?

Learn the vocabulary of your disease.  This will help you understand what medical professionals tell you and position you to be a better advocate for yourself.  Doctors respect that.

2. Get organized.

Take names and take notes from the very start.  It doesn’t matter if you use a computer program or a small notebook.  Develop a system that works for you.  Keep a chronology of conversations and doctor visits, diagnostic and lab test results, symptoms, treatment plans/options, medications and any reactions to them.  Collect business cards of your providers and keep them in a plastic sleeve.

Prepare a medical history and medication list.  You may be seeing many doctors or specialists.  Type up a clear, concise medical history.  Ask the nurse to put it in your chart and hand a copy to the doctor.  You’ll still have to fill out their forms, but they might pay more attention to your document than the form.  Keep an up-to-date medication list and bring it to every visit.

Read and understand your insurance policy.  Learn the definitions and differences between co-pays, deductibles, co-insurance, pre-authorization, out-of-network, formulary tiers, denials, appeals and all the rest.  Ask for an insurance case manager for complicated situations.  Always check to see whether the medical professional you want to use participates in your insurance.

3. Stand your ground, nicely.

Make friends and learn names.  You will need the help of front office staff, aides, nurses, and the billing office.  Especially in a big institution, it helps to know and ask for specific people.

Come prepared.  Bring questions to your doctor visits but don’t dump 12 inches of Google research on their desk.  Bring a notetaker if possible.  Be mindful of the physician’s time but don’t let yourself get rushed out of the office if you haven’t finished.

 Get second or third opinions.  Don’t feel stuck with the treatment team that first saw or diagnosed you.  Ask for a full range of treatment options and research them yourself as well.  You are the center of the medical team you will be building.  Make sure you are satisfied with your doctors’ credentials, experience and bedside manner.  Verify that the doctor accepts your insurance.

Ask about medications or tests that you are being prescribed and why.  There may be alternatives, like a cheaper generic medication.  Or maybe you don’t need another MRI so soon.  Remember, doctors have no idea or concern about what things cost you, your insurance or Medicare.  Their “defensive medicine” can cost you a fortune.

4.  Always follow-up.

Never assume things will work as they should.  If someone tells you he or she will do something – consult with a colleague, order a test, fax a document, call you with results, talk to your insurance, phone in a prescription – make sure to follow up yourself.  All too often, these things fail to happen as promised, with sometimes serious consequences.

Schedule appointments as early as possible.  Many specialists are booked months in advance.  You can ask to be put on a cancellation list and call frequently to check for unexpected openings.  This is where the “making friends” advice can help.

Continue your medical education.  Medical breakthroughs happen every day.  Once you have identified your credible sources, check regularly for new information.  Google Alerts are one useful tool that will send updates on the topics you request.

Author: Elisabeth Schuler Russell, President Patient Navigator, LLC.  Please cite this source if content is used.

Posted in Cancer, Caregivers, Chronic Disease, Clinical Trials, Elder Care, Insurance, Medicare, Patient Centered Care, Patient Safety, Problem Solving, Roadmaps, Uncategorized, Women's Health | Tagged , , , , , , , , | Leave a comment

Roadmap: Successful Medical Communication

“Unless you learn the language of your disease and communicate effectively with your medical team, you put yourself at risk for inadequate treatment and medical errors.  Not all doctors provide individual tutorials.” Elisabeth Russell, President, Patient Navigator

Being diagnosed with a serious illness is a frightening experience.  It is important that you research and educate yourself about your disease and learn to communicate with your medical team.  An informed patient gets better results.  Here’s how:

Gather good information and learn the vocabulary

The Internet has made research widely available, but it can be a double-edged sword.  Consult only credible websites to educate yourself.  Check who operates the site, who funds the site, where they get their information and how current it is.   Do not initially overwhelm yourself with information, and please don’t begin your search by typing “cancer” into a search engine!

While online, disease-specific discussion groups can be a valuable source of support and knowledge, be cautious when reading information posted there and make sure to verify it with other sources.

After you’ve done this research to educate yourself and to learn the language of your illness, you should explore the resources available on patient education sites specific to your illness.

Not all groups are created equal, however. It’s usually best to start with the larger, national groups.  You can quickly find whether your disease has a national advocacy or educational organization to support it by typing “National Association for (name of disease)” into a good search engine.  There are smaller or very specific advocacy groups as well, but be mindful of their limited scope, mission and access to resources.

 Communicate Effectively and Get the Answers You Need

Now that you have learned about your illness and feel prepared with the right questions and vocabulary, make the most of your medical appointment and discussions.

Come prepared to your doctor’s appointment

  • Keep and bring along an updated notebook with your medical history, medications, treatments, lab and pathology results, allergies, reactions, and medical provider contact information.  Be as specific and organized as you can in your record-keeping.
  • If you are seeing a new provider, try to provide a summary to the doctor or nurse prior to your visit to save time.  This will allow more time to discuss your current situation, questions and concerns.
  • When possible, write your questions ahead of time so that you can focus on the answers you are seeking without being intimidated by information overload once you’re in the office.

Bring someone with you to your visit

  • Bringing a friend or a family member with you is helpful on many levels.  This person will be able to offer you emotional support as well as an extra set of ears to process all the medical information, which may be difficult for you, as the patient, to absorb during an anxious time.
  • Your partner can write down the doctor’s responses, ask for clarifications and go over them with you at home. If the doctor gives permission, you may want to tape record his/her response so there is no way of misinterpreting the information.

Ask as many questions as you need and listen carefully to the answers

  • Think about how you best process information.  Some people immediately want to know as much about their illness as possible; others become overwhelmed and want to approach their decision-making more gradually.  Be honest with your doctor; explain how he or she can best communicate with you.
  • Have a list of questions ready for the doctor.  Take your time and be sure to ask if you’re unsure of something or do not understand it.  If you need more time, ask for it or schedule a nurse visit or phone call so that you may go over everything at the pace and level you need.
  • At the same time, be mindful of the doctor’s time. You will gain his or her respect immediately and be treated more like an active participant in your care if the doctor sees that you have tried to educate yourself and are sufficiently versed in the topic to allow for meaningful discussion of your disease, treatment options, side effects and other issues.

You are not trying to out-do the doctor here, or to presume that your recent personal research trumps his or her years of education, training and medical practice.  However, it shows that you have worked hard and intend to be your own best advocate.

Remember that you, as a health care consumer, will receive the best care if you are an informed, active participant in your medical treatment.  The days when “The doctor knows best” were enough to manage your care are behind us.  It may take a few visits with your doctor to develop a strong partnership.  Be courteous but make sure that your needs are met.  If the relationship is not working, look for another doctor.

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Medicare 2014 Open Enrollment Is October 15 – December 7

Medicare’s 2014 Open Enrollment Period will run from October 15 through December 7.  During this period, people with Medicare can change their Medicare health and prescription drug plan coverage options.  Changes that are made on or before December 7 will take effect on January 1, 2015.  The official Medicare site is quite user-friendly and is a good resource to answer your Medicare questions.

The Affordable Care Act’s “Health Insurance Marketplace” is not connected to Medicare.  The Marketplace does not affect your Medicare choices or benefits. No matter how you get Medicare, whether through Original Medicare or a Medicare health plan, you won’t have to make any changes. Learn about the 5 ways the Affordable Care Act affects people with Medicare by adding new benefits.

This is also a good time to review your Part D Prescription Drug Plan coverage.  If your medications have changed, it may be worth your while to do some research which you can do by creating a drug list online through the Medicare site to see which plans cover your medications and to shop for the best deal.

If you are happy with your Medicare plan, there is no need to take action.

The official Medicare site has done a great job explaining the basics in a user-friendly way. The Medicare Rights Center has posted a useful article that sums up the difference between “traditional Medicare” and a “Medicare Advantage Plan.” The Center offers several useful newsletters that can help you stay informed.

You also have the option, through the MyMedicare portal, to set up your own account to track claims, providers, and manage your health and medications list.  The site offers tools to compare nursing homes and Medicare plans.

A word of caution about changing Medicare health (not drug) insurance plans:  Private Medicare Advantage Plans (Part C) can start marketing to you as of October 1.  These are private HMO or PPO insurance plans that contract to Medicare to provide your services; they are not traditional Medicare. While Advantage plans may include benefits for vision or other coverage, you must work within that company’s existing network of doctors.  This can limit your choices.

Before you make any decisions or changes to your Medicare, do your research. Don’t let a fancy marketing brochure fool you.  In our experience, patients with Medicare Advantage plans have often had problems with access and coverage for their healthcare needs.   We encourage our clients should stick with traditional Medicare:  Part A – hospitalization; Part B – outpatient; Part D – prescription drug plan; plus a Medigap supplement policy to cover the 20% Medicare does not cover.

As always, we at Patient Navigator can help through any stage of this process to research and analyze your insurance options.

Posted in Elder Care, Government Agencies, Health Care Reform, Insurance, Medicare, Other health issues, Uncategorized | Tagged , , , , , , , | Leave a comment

When Illness Strikes – What To Do First

Any serious diagnosis thrusts patients and their families into an unfamiliar world of doctors, tests and treatment options.  They must simultaneously find information, make decisions under pressure, seek the best medical care, cope with family changes, and deal with insurance, financial, employment, caregiver or school issues.

Here are my suggestions as you begin the journey through illness.

 1.  Get smart fast.

Become a savvy, health literate advocate. Gather good information using only credible sources.  National advocacy groups often have excellent information, such as the Alzheimer’s Association.  For cancer research, start with the National Cancer Institute  and the American Society of Clinical Oncology.  An excellent site is UptoDate, a clinical database with many free patient articles.  The National Library of Medicine offers PubMed for academic research, articles and much more. Medscape is also a credible research site.

Beware of Dr. Google.  When evaluating health information on the internet, think about: Who operates the website? Who is responsible for the website’s content? Who funds the website? How does the website maintain your privacy? Where do they get their information? How current is the information on the website? Does the website have a linking policy? What does your doctor say?

Learn the vocabulary of your disease.  This will help you understand what medical professionals tell you and position you to be a better advocate for yourself.  Doctors respect that.

 2.  Get organized.

Take names and take notes from the very start.  It doesn’t matter if you use a computer program or a small notebook.  Develop a system that works for you.  Keep a chronology of conversations and doctor visits, diagnostic and lab test results, symptoms, treatment plans/options, medications and any reactions to them.  Collect business cards of your providers and keep them in a plastic sleeve.

Prepare a medical history and medication list.  You may be seeing many doctors or specialists.  Type up a clear, concise medical history.  Ask the nurse to put it in your chart and hand a copy to the doctor.  You’ll still have to fill out their forms, but they might pay more attention to your document than the form.  Keep an up-to-date medication list and bring it to every visit.

Read and understand your insurance policy.  Learn the definitions and differences between co-pays, deductibles, co-insurance, pre-authorization, out-of-network, formulary tiers, denials, appeals and all the rest.  Ask for an insurance case manager for complicated situations.  Always check to see whether the medical professional you want to use participates in your insurance.

 3.  Stand your ground, nicely.

Make friends and learn names.  You will need the help of front office staff, aides, nurses, and the billing office.  Especially in a big institution, it helps to know and ask for specific people.

Come prepared.  Bring questions to your doctor visits but don’t dump 12 inches of Google research on their desk.  Bring a note taker if possible.  Be mindful of the physician’s time but don’t let yourself get rushed out of the office if you haven’t finished.

 Get second or third opinions.  Don’t feel stuck with the treatment team that first saw or diagnosed you.  Ask for a full range of treatment options and research them yourself as well.  You are the center of the medical team you will be building.  Make sure you are satisfied with your doctors’ credentials, experience and bedside manner.  Verify that the doctor accepts your insurance.

Ask about medications or tests that you are being prescribed and why.  There may be alternatives, like a cheaper generic medication.  Or maybe you don’t need another MRI so soon.  Remember, doctors have no idea or concern about what things cost you, your insurance or Medicare.  Their “defensive medicine” can cost you a fortune.

 4.  Always follow up.

Never assume things will work as they should.  If someone tells you he or she will do something – consult with a colleague, order a test, fax a document, call you with results, talk to your insurance, phone in a prescription – make sure to follow up yourself.  All too often, these things fail to happen as promised, with sometimes serious consequences.

Schedule appointments as early as possible.  Many specialists are booked months in advance.  You can ask to be put on a cancellation list and call frequently to check for unexpected openings.  This is where the “making friends” advice can help.

 Continue your medical education.  Medical breakthroughs happen every day.  Once you have identified your credible sources, check regularly for new information.  Google Alerts are one useful tool that will send updates on the topics you request.

Posted in Cancer, Caregivers, Chronic Disease, Elder Care, Government Agencies, Insurance, Other health issues, Patient Centered Care, Problem Solving, Uncategorized, Women's Health | Tagged , , , , , , , , , | Leave a comment

Holiday Grief – Survival Tips

Many people experience depression during the holiday season. This is not surprising given that we are bombarded with loud Christmas music wherever we go, incessant advertising and a non-stop drumbeat to shop, buy, spend and create the perfect Hallmark holiday. It is hard not to feel stressed out if you then add the pressure of entertaining, houseguests and a long list of expectations.

Now imagine trying to face all this when you are grieving the loss of a loved one.

It is very hard. It is painful. It is unbearably sad.

I lost my mother very suddenly and unexpectedly in May 1990, when she was 63 and I was 31. I made the decision to skip Christmas entirely that year – no tree, no gifts, no decorations. I simply could not bear it.

Fortunately, my boyfriend (now husband) understood and supported me, and there were no children to worry about back then. It was the best I could do.

The pressure to go along with the holidays is intense. Here are my own tips on how to get through them if you are grieving.

1. Don’t let anyone pressure you or try to tell you what will make you feel better. Only you know what helps.

2. Remember your loved one in whatever way seems right – a walk in the woods, a prayer service, watching their favorite movie, setting a place at your table. You don’t need anyone’s permission or concurrence.

3. Don’t be afraid to tell people that it really is not a Merry Christmas or Happy Holiday for you. Let your colleagues at work know that the season is hard for you and ask them to understand if you are distant.

4. Learn to say no.

5. Give yourself permission to mourn. It is normal and necessary. And then tell yourself gently, over and over, that you will not always feel this way. And, in time, you won’t.

I’ve learned a great deal over the years about loss and grief. I’ve learned to grow from each loss in my life, but it has taken a lot of work and faith. If you are grieving this holiday season, you are not alone. But please know and believe, with all your heart, that you will not always feel the way you do now. Time does heal. Things will get better.

For more information on grief and the holidays, I suggest:

Therese A. Rando, PhD. Grieving: How to Go on Living When Someone You Love Dies. (Note: This book saved me as I grieved the loss of my mother).

GriefShare,  Surviving Grief During the Holidays

Wendt Center for Loss and Healing, Washington, D.C. Happy Holidays?

National Hospice and Palliative Care Organization, Grieving During the Holidays

Posted in Caregivers, Elder Care, Integrative Care, Mental Health, Other health issues, Patient Centered Care, Survivorship, Uncategorized | Tagged , , , , , , , , | Leave a comment

Patient Navigators – Who We Are and What We Do

Patient Navigators and Healthcare Advocates:

Who They Are and What They Do

 By Elisabeth Schuler

Founder and President, Patient Navigator LLC

Past President, National Association ofHealthcare Advocacy Consultants

 Updated August 2016

Patient advocacy, or patient navigation, is gaining attention as an emerging profession, both in the media and in the popular lexicon, because it fills so many gaps in the current American health care system. This is especially true today as we continue full implementation of the Patient Protection and Affordable Care Act, which portends considerable change for consumers in how health care is delivered and paid for in this country.  Patient navigation was considered an important component in healthcare reform as discussed by oncologists in this article.

What is the history of patient and healthcare advocacy?

The concept of patient advocacy in the United States has a long history dating back to the beginning of the twentieth century but gained significant attention as part of the movement for patient rights in the 1970’s. The National Welfare Rights organization coalesced around a patient bill of rights and in 1972 it became incorporated into the accreditation standards for hospitals by the American Hospital Association.  In an effort to professionalize the field of patient advocacy, Ruth Ravitch, a founder of the ground-breaking patient advocacy program at Mt. Sinai Hospital in New York City, along with Joan Marks who became the director of the program, established the Master’s program in Health Advocacy at Sarah Lawrence College in 1980 to educate professionals to work in hospitals, government, policy and community and private settings. Since then, many courses and certificate programs have been created to educate patient advocates to work in a variety of settings, including the University of Miami and the Center for Patient Partnerships at the University of Wisconsin.

What is the origin of patient navigation?

The original concept of patient navigation was pioneered in 1990 by Dr. Harold P. Freeman, a surgical oncologist at Harlem Hospital, for the purpose of eliminating barriers to timely cancer screening, diagnosis, treatment, and supportive care. Many individuals in medically underserved or minority communities were at risk because of financial, communication, health care system and cultural barriers to care.

In 2005, U.S. policymakers came together to support the Patient Navigator Outreach and Chronic Disease Prevention Act of 2005 (Public Law 109-18). With unanimous support in Congress, and under the leadership of Senator Robert Menendez (D-NJ), the Act authorized the Secretary of Health and Human Services to make grants through 2010 for the development of patient navigator programs. A total of $25 million was awarded over five years to develop community-based navigation programs. The Center to Reduce Cancer Health Disparities was created at the National Institutes of Health.

Over the years, data from Dr. Freeman’s programs and others began to prove how valuable navigation could be to improve cancer diagnosis and treatment outcomes. For example, studies found that patient five-year survival rates went from 39% (prior to the development of the patient navigator program) to 70% for breast cancer patients at Harlem Hospital.

These types of positive outcomes have given rise to other community-based navigator efforts. The American Cancer Society, The Susan G. Komen Foundation, and the National Cancer Institute have all supported various navigator research efforts based on the success of Dr. Freeman’s model.

Another part of the navigator landscape is now seen in hospital-based nurse navigators, particularly for breast cancer patients. 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.

Most recently, the Affordable Care Act required that “insurance navigators” be available to help consumers research and enroll in health insurance through the law’s health insurance marketplace, the “exchanges.”

It’s no wonder that there is confusion about these definitions.  Since Dr. Freeman’s groundbreaking work in Harlem, the concept of navigation or advocacy has grown far beyond cancer and essentially now covers almost anything being done to help patients and families find their way through the maze of our healthcare system.

What are private patient advocates and navigators?

Even as the U.S. Government had begun to address the disparities in access to cancer care among specific communities and populations in the past eight years, the idea of private, one-to-one patient advocacy was born of necessity as a way to mitigate the complicated, inefficient, expensive and fragmented healthcare delivery system in the United States.

Since 2005, the concept of private patient advocacy has taken on a life of its own.  My company, Patient Navigator LLC, was created in 2004 and recognized as a pioneer in the private advocacy profession.  Just as many people now have a financial advisor, personal trainer or life coach, more people are learning that they can hire a healthcare advisor or navigator with insider knowledge and direct experience about how the healthcare system works.  These healthcare advisors can help to navigate medical problems, to overcome obstacles in the healthcare system or to find resources in the same way as other expert “guides” solve problems and avoid pitfalls.

What kinds of things do patient navigators or advocates do?

Private patient advocates and navigators in most cases work directly with and are paid by individuals and families. Private advocacy or navigation services are not generally covered by insurance, despite the fact that many studies prove that better coordination of medical care saves money and improves outcomes. There have reportedly been some instances in which health flexible savings accounts were allowed to be used to pay for navigator or advocate services.

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 older adults, others only with cancer patients or others only to solve medical billing problems. It depends entirely on the individual’s business and practice.

Who are these private advocates and navigators?

Many of the people who want to do this work come to it because they have been through a life-changing medical event, either for themselves, a friend or a loved one. They have learned the hard way how difficult it is to navigate and manage a complicated diagnosis, treatment or chronic condition. They experienced the confusion, lack of coordination, dangers and inefficiencies in our health care delivery system and now they want to share both what they have learned and how to avoid missteps along the way.  In many cases, these are laypeople with no prior medical experience or training.

Increasingly, more nurses, social workers and physicians are becoming private advocates, often after having worked within the healthcare system.  While hospitals will generally only hire nurses or other medically-licensed professionals to serve as their in-house navigators, most private advocates come from a variety of backgrounds.

The National Association of Healthcare Advocacy Consultants

In August 2009, the National Association of Healthcare Advocacy Consultants (NAHAC) was founded by Joanna Smith, the owner of Healthcare Liaison, in Berkeley, California.  A handful of early believers realized that individuals working as advocates (or navigators, healthcare consultants, etc.) needed to come together to begin to professionalize this emerging private patient advocate/patient navigator industry and to educate consumers about its existence and usefulness.

After holding two national conferences in 2009 and 2010, the NAHAC Executive Committee transitioned NAHAC into a non-profit organization whose mission is to professionalize healthcare advocacy and provide healthcare consumer education to the public.  NAHAC became a 501c3 non-profit organization in 2011. We subsequently held another national conference in 2012. Our 2014 conference was held October 31-November 2 in Chicago.  The 2016 conference will be held in Seattle, Washington. NAHAC members enjoy access to monthly educational events, professional networking opportunities and peer-to-peer advice.  Members of NAHAC must abide by our Code of Ethics, which in August 2012 was cited as a model by the American Medical Association.  In 2014, we are developing a model of Best Practices that is being adopted by the advocacy community.

The Alliance of Professional Health Advocates

Another advocacy organization is the Alliance of Professional Health Advocates, APHA.  This organization provides advocacy practices large and small with the business support they need to help them get started and grow, including legal, insurance, financial, contracts, marketing, technology and networking with hundreds of care professionals.  It also publishes the AdvoConnection searchable directory of advocates across the country.

Patient Advocacy Credentials

At present, patient advocacy/navigation is not a regulated profession. There is no national or state licensure. There is no nationally recognized credential for calling yourself a patient advocate or navigator.  Many organizations or schools now offer “certificates” in navigation or advocacy but none of these is a national credential.

To tackle the issue of setting standards and competencies for the profession, in January 2013 a group of individuals representing various advocacy constituencies came together to undertake the task of developing a national patient advocacy credential that will be substantive, accredited, recognized and adopted.  This group became the Patient Advocate Credential Board.  More information can be found on this group’s website.  We foresee a confluence of interests and mandates as we collectively move to build an excellent professional credential.

As with any emerging industry, there is a lot of experimentation that goes into charting new territory. But it should reassure consumers that as the need for advocacy services grows, they will have a reliable way to find and screen patient navigators and advocates and that they can rely on NAHAC or APHA to assist them.

What’s in store?

It’s clear that the concept of patient advocacy is here to stay.  Our challenge is to continue to build the profession, ensure its members adhere to specific standards, ethics and best practices and to help consumers know who we are and how we can help.

We can also expect the concept of guides/navigators/advocates to become an ongoing part of the healthcare delivery system, whether through private advocacy practices, new medical home models, accountable care organizations, or within the healthcare system itself.  Our goal is to be recognized and understood as integral members of a healthcare team with a unique “quarterback” or “project manager” role to play.

How can I find a navigator or advocate?

The National Association of Healthcare Advocacy Consultants (www.nahac.com) offers a searchable directory of members on its website.  Another directory is available through AdvoConnection (www.advoconnection.com).  Word of mouth or personal referrals are always a good way to find a navigator as well.

What questions should I ask if I want to hire someone?  What should I expect? What do they charge?

You should interview an advocate or navigator the same way you would interview any other professional you would consider hiring.  Among questions you could ask are: Have they handled other cases similar to mine before?  What is your background and training?  How long will it take to perform the services I need?  What do you charge?  Do you have references?  Do you provide written reports about the services you have provided?  Where are you located? What are your hours? How do you communicate with your clients?  What would you typically do to help someone in my situation?

Working with a patient navigator is an intensely personal relationship.  You must feel that you can trust and work with that person comfortably.  You should expect that the navigator will respect your privacy and that he or she is a good communicator. You may need to speak with several candidates before you feel comfortable moving ahead.

You should also expect a written contract or agreement which specifies what the navigator will deliver to you and when, as well as a detailed explanation of his or her fees and charges.  Do not rely on verbal promises or commitments; get it in writing.

There is no standard fee for private navigation services.  Fees can range from $60 to $250 per hour, depending on the person you interview.  Based on the navigator’s track record, you should feel comfortable that you will be getting your money’s worth, as you would with any other professional service provider.

About the Author

Elisabeth Schuler is the Founder of Patient Navigator LLC, a pioneering, full-service patient advocacy firm established in 2004 to help patients and families navigate illness and the U.S. healthcare system.  She is a co-founder and past President of the National Association of Healthcare Advocacy Consultants and the winner of the 2012 Patient Advocacy Compass Award.  From 2011-2012, she was a member of the strategic planning task force at the University of Wisconsin’s Center for Patient Partnerships.  In 2009, she was trained as an integrative oncology “Cancer Guide” by the Center for Mind-Body Medicine in Washington, D.C. and in 2011 she earned a certification in “Mind-Body Medicine” from the same organization. She has completed a continuing education course on conventional medicine at Georgetown University.  In 2007, Elisabeth was trained as a Certified Senior Advisor (CSA)®.  She has been a hospice bereavement counselor, launched a Parent Loss Support Group in 1991 and has facilitated grief support groups over many years.

In her first career, Elisabeth worked 24 years in the U.S. Government, 22 of them as a Foreign Service Officer with the U.S. Department of State during which she earned nine prestigious Honor Awards.  She holds a master’s degree from Georgetown University’s School of Foreign Service and a Bachelor’s Degree in French Studies from the American University in Paris, France and the Sorbonne.  The gift of her daughter’s survival after a pediatric brain tumor led Elisabeth to her new calling as a patient navigator so that she can advocate, educate and solve problems for patients and families.

Visit her Patient Navigator website and Patient Navigator blog to learn more.

Most recently, Ms. Schuler was profiled in the August 20, 2016 New York Times.  Further media references are available here.

You can also find Patient Navigator on Facebook and Twitter @PatientNavigate and LinkedIn

Updated August 2016

 

 

 

Posted in Cancer, Caregivers, Chronic Disease, Elder Care, Government Agencies, Health Care Reform, Insurance, NAHAC, Other health issues, Patient Centered Care, Patient Safety, Problem Solving, Training, Uncategorized, Women's Health | Tagged , , , , , , , , , , , , | 22 Comments

Medicare 2013 Open Enrollment Period October 15-December 7

Medicare’s 2013 Open Enrollment Period will run from October 15 through December 7.  During this period, people with Medicare can change their Medicare health and prescription drug plan coverage options.  Changes that are made on or before December 7 will take effect on January 1, 2014.  The official Medicare site is quite user-friendly and is a good resource to answer your Medicare questions.

This year, you may hear a lot about the Health Insurance Marketplace. The Marketplace Open Enrollment period (October 1, 2013–March 31, 2014) overlaps with the Medicare Open Enrollment period (October 15–December 7, 2013). The Marketplace is designed to help people who don’t have any health coverage. If you have health coverage through Medicare, the Marketplace won’t have any effect on your Medicare coverage.

This is also a good time to review your Part D Prescription Drug Plan coverage.  If your medications have changed, it may be worth your while to do some research which you can do by creating a drug list online through the Medicare site to see which plans cover your medications and to shop for the best deal.

If you are happy with your Medicare plan, there is no need to take action.

The official Medicare site has done a great job explaining the basics in a user-friendly way. The Medicare Rights Center has posted a useful article that sums up Part D Enrollment options.  The Center offers several useful newsletters that can help you stay informed.

You also have the option, through the MyMedicare portal, to set up your own account to track claims, providers, and manage your health and medications list.  The site offers tools to compare nursing homes and Medicare plans.

A word of caution about changing Medicare health (not drug) insurance plans:  Private Medicare Advantage Plans (Part C) can start marketing to you as of October 1.  These are private HMO insurance plans that contract to Medicare to provide your services; they are not traditional Medicare.

Before you make any decisions or changes to your Medicare, do your research. Don’t let a fancy marketing brochure fool you.  In our experience, patients with Medicare Advantage plans have often had problems with access and coverage for their healthcare needs.   We encourage our clients should stick with traditional Medicare:  Part A – hospitalization, Part B – outpatient, Part D – prescription drug plan plus a Medigap supplement policy to cover the 20% Medicare does not cover.

As always, we can help you research and analyze your insurance options.

Posted in Elder Care, Government Agencies, Health Care Reform, Insurance, Other health issues, Patient Centered Care, Uncategorized | Tagged , , , | Leave a comment

Obamacare Insurance Exchanges Launch Today

Here is an excerpt from my recent article on the Affordable Care Act. This excerpt focuses on the insurance mandate, exchanges and subsidies.

Workplace Health Insurance

About 50% of us get insurance through employers or the workplace.  For those people, not much will change although they will benefit from caps on out-of-pocket expenses and certain free preventive care.  (Note: Employers generally seem to be offering higher deductible plans which provide an incentive for consumers to be conscious of their health care spending.  But that trend toward high deductible plans is unrelated to any provision of the Affordable Care Act.)

A bigger change down the road will be for companies with more than 50 employees who do not get insurance coverage now from their employer.  As of 2015, the government will require these companies to cover full-time workers or pay a penalty. This provision is designed to get more employees covered.  One controversy arises over whether this requirement will force employers to stay under the 50 employee threshold or offer less than full-time work to avoid paying for employee health insurance.

Smaller employers won’t face the same penalties for refusing to buy insurance but as an incentive, the government will set up special small business marketplaces to make it easier.  Unlike now, insurance companies won’t be allowed to inflate prices for these small group plans if some employees are sick.

Purchasing Your Own Insurance – The Exchanges Open on October 1, 2013

In my view, one of the best things about the Affordable Care Act is that it will make health insurance available to millions of Americans who are now completely uninsured, and more affordable for the 14 million who buy their own coverage (because they are self-employed, a retiree under 65 or a part-time worker, for example).  In our advocacy practice, we have seen first-hand the often devastating financial and medical outcomes when an uninsured person gets sick.  If you purchase insurance through the exchanges between October 1 and December 15, you will be covered by January 1, 2014.

That being said, another controversy over the Affordable Care Act is precisely because there will be a mandate that everyone must be covered by some type of health insurance, whether through an employer, the Government (Medicaid, Medicare, the military) or through private purchase of insurance.  Those who are choose to remain uninsured will pay a penalty.

At the centerpiece are the Health Care Exchanges or Marketplaces that are being set up in each state.  There are 16 states plus the District of Columbia which decided to set up their own exchange.  34 states (generally with Republican governors and legislatures) chose not to set up an exchange and have defaulted to a Federal model. The remaining seven states will operate an exchange in partnership with the Federal Government.  You can learn more about your own state here.

The marketplaces are designed to be a virtual insurance shopping mall with approved plans competing for business.  The qualified plans that participate in the Exchanges will be required to offer a uniform minimum benefits package which would be offered at four levels of value (Bronze-Platinum), making comparisons across plans easier.

The essential health benefits in these uniform packages must include at least the following general services:  ambulatory patient services, emergency services, hospitalization, maternity and newborn care, mental health benefits and substance use disorder services, prescription drugs, rehabilitation services and devices, laboratory services, preventive and wellness services and chronic disease management, and pediatric services including oral and vision care.

Plans may offer catastrophic coverage that doesn’t meet one of the four levels of coverage, but only to enrollees under the age of 30 or those who would otherwise be exempt from the requirement to purchase coverage because the premium exceeds 8% of their income.

The National Patient Advocate Foundation has made a useful brochure on the marketplaces available here and you can learn more about shopping for coverage here.

You should note that insurance plans that existed before March 23, 2010, and have been “grandfathered” into the system may be exempt from some provisions.  You can learn more here.

Premium subsidies and tax credits to make insurance more affordable

Federal subsidies in the form of premium tax credits to make the coverage more affordable will be available to consumers meeting income requirements.  U.S. citizens and legal immigrants who purchase coverage in the new health insurance exchanges and who have income up to 400% of the federal poverty level ($43,320 for an individual or $88,200 for a family of four in 2009) will be eligible for Federal subsidies.

To be eligible for these tax credits, individuals must not be eligible for Government coverage – including Medicaid, the Children’s Health Insurance Program, Medicare, or military coverage – and must not have access to health insurance through an employer.

Cost-sharing subsidies that reduce a plan’s deductibles, co-payments and total out-of-pocket costs will be available to people with incomes up to 250 percent of the poverty level, or about $29,000.

You can use this subsidy calculator developed by the Kaiser Family Foundation to see what your costs may be. (There is an exception in cases when the employer plan does not cover at least 60 percent of covered benefits on average or the employee share of the premium exceeds 9.5% of the employee’s income.)

There will be insurance “navigators” available in each State to help individuals understand the marketplaces.  However, the amount of help available depends on how actively and publicly the State is moving forward with ACA implementation.  Some states have passed laws restricting navigators or other organizations from explaining the law to the public.

Good sources of information about the exchanges include a National Patient Advocate Foundation guide, the Department of Health and Human Services, and the Kaiser Family Foundation.

Posted in Elder Care, Government Agencies, Health Care Reform, Insurance, Other health issues, Patient Centered Care, Problem Solving, Uncategorized | Tagged , , , , , , , , | Leave a comment

The Affordable Care Act Explained

In the Autumn Edition of the Patient Navigator newsletter, we devoted an entire special edition to explaining the Affordable Care Act (“Obamacare”) and its key points.  We cover the patient protections, insurance mandates, subsidies and insurance exchanges, Medicare and Medicaid.  We provide many additional sources of credible information for your use.   In our view, everyone needs a clear explanation of the law and what it means.

Please read this important newsletter here to become an informed healthcare consumer.

Posted in Elder Care, Government Agencies, Health Care Reform, Insurance, Patient Centered Care, Problem Solving, Uncategorized, Women's Health | Tagged , , , , , , , | Leave a comment

Tongue-piercings: who knew they could help you get around?

You may love your tongue piercing, or perhaps you once made it clear to your kids that they wouldn’t have one as long as they were living under your roof. But they may someday be instrumental in helping folks who have lost the function of their arms and legs in getting around on a daily basis.

Scientists at Georgia Tech have developed the Tongue Drive System — it uses a magnetic tongue stud and a series of magnetic sensors, attached to an inconspicuous retainer held in the roof of the mouth, to allow the patient to use their tongue to pilot their motorized wheelchair. As the stud moves across the sensors, the retainer transmits the movement to an iPod or iPad. The Apple device then determines the stud’s position relative to the various sensors, and controls the wheelchair directly by either controlling the positions of a cursor on a touch screen or by substituting for the function of a joystick.

This gives the system several advantages over the current “sip and puff” technology:

  • · it allows the patient to be more discreet in controlling the chair
  • · it can be programmed with as many commands as the patient can remember
  • · all the commands are available to the patient at the same time
  • · patients usually become proficient and accurate faster

The scientists have created a universal interface so the Tongue Drive System can be attached to any motorized wheelchair. The system is currently in a clinical trial, and being tested among 11 patients.

Posted in Chronic Disease, Clinical Trials, Other health issues, Patient Centered Care, Problem Solving, Uncategorized | Tagged , , , , | Leave a comment