The Myth of Patient Advocacy Certification

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(Updated: February 2017)

Not a week goes by that someone doesn’t write to me asking about patient advocacy certification.  It’s confusing, because they read that there are courses that will help them become certified, and then they find other pieces I have written about the lack of a certification system.

So it’s time to clarify: There is a difference between earning a certificate – and being certified, even if Merriam Webster might tell you those two concepts are related.

“To be certified” carries with it an assumption that there is some sort of national (even international) recognition, accreditation, or standard set of skills, competencies and critera that someone has met,developed oand earned.  As if a national body of some sort has said “Yes – this person meets this high standard of education and capability, so we are blessing him or her with our certification.” “To be certified” may even mean to some people that some sort of governmental recognition in the form of a license or listing has taken place.

But there are no governments, nor nationally respected, nor generally accepted groups that have determined a group of standards, nor benchmarks, nor capabilities that supply a certification that is universally recognized. And that is the key:  none are universally recognized.

No such a certification exists – yet.*

The confusion comes from the fact… Continue Reading →

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Enough is Enough! Helping Elderly Patients Make Decisions

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One of our AdvoConnection members, Ken Schueler, shared a favorite article of his, published in JAMA a couple of years ago, and a good reminder of one of our roles as patient advocates.  Written by Dr. Jennifer M. Soyke, it tells about an elderly patient named Lisa who passed away from Genug Syndrome.

(Unfortunately, JAMA requires a subscription to read this piece in its entirety, so please forgive paraphrasing here – but I think you’ll get the point…)

Never heard of Genug Syndrome?  You won’t find it in the medical literature.

Continue Reading →

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What’s the Difference Between a Patient Advocate and a Geriatric Care or Case Manager?

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One of our AdvoConnection members asked me about these differences a day or two ago…  So I thought I would share my reply with you.

She had called on a nursing home to see if they had interest in recommending her services to the families of some of its residents.  The nursing home director replied that they had a team of geriatric case managers they worked with – and asked what services she, the patient advocate, could provide that GCMs could not.

Since she really couldn’t come up with a useful answer, she asked me if I knew the differences in service offerings….

A few thoughts:

1.  The first, obvious answer is that a patient advocate is available to assist anyone of any age – not limited to someone who is elderly, or at least over a ‘certain age,’ as a geriatric case manager would be.

2.  Part of the answer depends on who’s paying the tab for the advocate’s or case manager’s services.  If the nursing home or the county or state’s social services department is paying the tab, then the GCM is the not the patient’s advocate – she is beholden to the nursing home or the taxpayers.  On the other hand, if the GCM’s services are paid for by the family or the patient, then they, too, are performing patient advocacy services.

3.  Our AC member advocate might have stumbled on a good marketing idea, however… but not the way she thought.  We can guess that geriatric case managers may not have the skills or the interest in providing some services patient advocates provide every day, such as hospital bedside monitoring, or doctor appointment accompaniment.  It could be that patients’ advocates and geriatric care managers are “coopetition.”  (Read more about coopetition in The Health Advocate’s Marketing Handbook.

4.  One way patient advocates and geriatric care managers are identical:  they are both included and invited to participate as members of AdvoConnection.  As independent practitioners who serve patients, we want to be sure families find the help they need for their loved ones.

Do you know of additional differences or similarities?  Please share them with us.

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FOR PATIENTSFOR ADVOCATES |
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Is a Patient Advocate or Navigator a Qualified Medical Expense for Patients?

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In the process of writing about Health Savings Accounts (HSAs) and Flexible Spending Accounts (FSA) I began looking at what constituted a “qualified medical expense,” which is the list of the products and services the IRS lets us pay for tax-free.  They are those expenses that we can either claim on our taxes, or pay for through the use of an HSA, MSA or FSA. (What would the IRS ever do without acronyms?  But I digress…)

After looking at the list of expenses, I began to wonder whether a patient / taxpayer who hires and pays for a health or patient advocate can deduct that expense from their taxes or account?  Are we, as advocates who improve their healthcare experiences, deductible expenses?

So I went straight to the IRS horses to see what would come from their mouths… and what came from their mouths were big, loud question marks. They don’t know.  Advocates might be a deduction.  Or they might not.

Frustratingly, the process to figure out an answer requires people willing to test the system, at their own expense, which culminates in a “ruling.”  And even then, when there is a ruling, the answers might change.  (Is this a great country, or what?)

The best way to explain this is to use a metaphor – a parallel situation that resulted in a ruling.  Acupuncture.

Years ago, patients began to deduct the cost of acupuncture from their taxes. Once in awhile, one of those patients got audited.  For the first dozen or hundred or thousand (who knows?) the deduction was not allowed because there was no “ruling.” After awhile, there were enough people who fought for the deduction (paying their CPAs or lawyers to do so) that the IRS finally came up with said-ruling that said, “OK – acupuncture is now included on the list of qualified medical expenses (AKA deductions.)”

So, a couple of notes:

The CPAs and lawyers who successfully got acupuncture reviewed did so by showing evidence that acupuncture has a medical benefit. (ha!  If your doctor doesn’t believe in the value of acupuncture, you can tell him it must work – because the IRS says so!)  Our patient advocacy parallel would be that we need to show that patient advocates provide a medical benefit.

Individuals can ask their CPAs and lawyers to ask the IRS for a “private letter ruling.” That would mean that, before the patient deducts something, he asks the IRS to rule on it.  (I thought about doing this on behalf of AdvoConnection’s member advocates, however  IRS Guy told me it has to be done by individuals, on a case-by-case basis, and cannot be done on behalf of an organization’s members.)

I reviewed the publications put out by the IRS and found a few parallel expenses that are allowed.  From IRS publication 502, I see Christian Science Practitioners (who, like advocates, are not licensed), Nursing Services (these services also do not require a licensed nurse, but can provide everything from true medical services to washing and grooming) to (you’ll love this) guide dogs.  When I asked IRS Guy about guide dogs, he said they are deductible because they assist patients who are blind to get the care they need.  Honestly, of all the goods and services on that entire list, that is the best parallel for health and patient advocates – guide dogs. (In my own humble opinion.)

It seems clear that in order to become a bona fide tax deduction, a few things are going to have to happen.

1.  Patients will need to begin deducting advocate services in order to test the system.

2.  Some patients, early adopters, are going to end up paying tax and penalties for their advocacy services because no ruling will yet exist.

3.  Those patients should be able to find a CPA or lawyer to help them fight the extra tax and penalty by showing the parallel services that already exist on the allowable deductibles list, and using stats that show that patient advocates do improve a patient’s medical care.

4.  Eventually it seems like advocate services will be able to be deducted – but (like everything else) it will take awhile.

So — that big disclaimer! — I’m not an attorney, nor am I a CPA… but it’s a fair question that deserves more review, plus brave patients and caregivers who are willing to be the deductions guinea pigs by claiming these very important and necessary medical services patients’ advocates provide.

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Why Can’t Patients Be Their Own Advocates?

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Imagine… you suffer chest pains and are swept off to the ER. The pain meds leave you too groggy to make good decisions. Who will help you?

Or… difficult symptoms result in a diagnosis that leaves you stunned. You leave the doctor’s office remembering very little of what you’ve been told. Now you aren’t even sure what to do next.

Or… you’ve begun to find it confusing to keep track of all your medications. You’re concerned you’ll make a mistake. Which ones are you supposed to take with food?  Or on an empty stomach?  What about having that glass of wine at dinner – will it affect the medicines you are taking?

Next week you’ll be admitted to the hospital for knee surgery.  You have friends who have acquired infections from surgeries – one even died.  You can’t advocate for yourself when you’re drugged and in pain… who will sit by your bedside to keep you safe?

Your loved ones live too far away to be much help.  Sometimes you just need a ride to an appointment, or someone to run to the pharmacy to pick up your prescription.

These are just a few of many scenarios that require us to find some assistance to be sure we get the best care and stay safe.  Whether you have a debilitating disease, a new diagnosis, or you just feel so lousy that you can’t think straight – it’s time to call in a patient advocate to help you.

New patient advocates often find themselves having to explain what they can do to help a patient that a patient or caregiver can’t handle him or herself.  Depending on the circumstances, having a patient advocate by your side can actually make – or break – your ability to heal, or even just cope.

Can you think of other scenarios that require a professional private patient advocate?  Why not share them in the comments!

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Dear Nurses, We Are Here to Help

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For the second time in just a few days, I’ve learned from an AdvoConnection advocate member that a nurse has become defensive and territorial in reaction to his choice of career.

Now, please know that I’m not dogging on all nurses. Not all all. Instead I’m looking at this as an opportunity to clarify – for everyone’s benefit, not just nurses’.

Last week I answered the question, “Does a patient advocate have to be a nurse?”  The question came in response to an experience where nurses had actually looked down their noses at another advocate, a non-nurse, suggesting she did not have the qualifications to be a patient advocate.  My answer is no.  All nurses are advocates, but not all patient advocates need to be nurses.

This time it’s very different, but no less upsetting to the person who was on the receiving end of the nurse’s defensiveness.  The advocate’s name is Ken.  He has worked for more than 30 years as both a physician’s assistant and a nurse.  In a conversation with another nurse, one who works in an oncology infusion center, he told her his plans for establishing himself as a private patient advocate.  She reacted by telling him that there was no room for him in healthcare as an advocate. SHE is the patient advocate for her patients.

Without question, I’m sure she, like most nurses, is an advocate for her patients.  But that’s not the same — at all — as a private patient advocate or navigator.  The real parallel, perhaps, is a private duty nurse.  A private duty nurse is definitely a private patient advocate, too.

But that’s not what Ken’s nurse-friend is.  Here are some of the differences, and the reasons why there is room for both nurses and advocates when it comes time to help a patient:

1.  Nurses are provider or facility-bound.  That is, the patient comes and goes, but the nurse stays, connected to the provider or facility.  As long as the patient is inside the nurse’s (provider’s or facility’s) domain, then the nurse can be the patient’s advocate.  But there is plenty of need for an advocate outside that domain, too.

2. If every patient only ever had one medical need at a time, went to one doctor at a time, got all their tests at the doctor’s office, took one drug at a time, got one bill at a time for care, THEN a location-bound nurse might be all the help that patient would need. But these days, and in particular as baby-boomers continue to age, many patients do have more than one medical problem they deal with, take more than one or two kinds of drugs, are being treated or are getting therapy for additional problems, and have too many confusing bills…  Ken’s friend isn’t the advocate who can help them.  A private patient advocate is.

3.  Hospital nurses do a yoeman’s job, managing way too many patients, often with at least one arm tied behind their backs.  We have all heard stories about when a patient pushes the help button to get up and use the bathroom only to have to wait…. and wait…. and wait…. and wait.  We also hear about the wrong drugs being administered, or infections that could have been prevented…  A private bedside advocate who is focused only on his or her one patient can be a lifesaver.  Ken’s friend can’t do that either.

As healthcare continues to get more and more confusing, as safety problems don’t improve enough to guarantee safety in the hospital, as access becomes more difficult because healthcare reform introduces 32 million new Americans to the care system – patient advocates will continue to grow in numbers, need and stature.

So, nurses (and others who haven’t yet figured out the value of private professional patient advocates and navigators)… Please understand that patient advocates are not trying to get in your way, nor subtract from your domain.  Instead, they are there to focus on their patients when you can’t, and to facilitate the communication and collaboration between their patients and their patients’ providers.

There’s clearly a need.  There’s plenty of room for all.  Let’s work together with some better understanding that both nurses AND advocates play important roles in improving their patients’ quality of life.

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Do I Have to Be a Nurse to Be a Patient Advocate?

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The answer is simple.  No.

So why do I ask this question?  Earlier this month, while attending the NAHAC Conference, the question was asked by a number of people.  As if the qualification to be an effective patient advocate relied on a nursing education.

Now please don’t get me wrong.  I am a huge supporter of nurses and nursing, in its many important forms.  I’ve written many times at About.com about nurses, nurse practitioners, and why I believe training as a nurse is far more patient-centered than other forms of medical training.  Most of my commentary comes from my appreciation for the “whole patient” approach most nurses provide.  I’m a fan – a BIG fan – of nurses and the nursing model for patient care.

Here are five reasons why a patient advocate does not need to come from a nursing background:

1.  Patient advocates actually perform a number of services, many of which have nothing to do with nursing.  Some are medical bill reviewers, some do research and writing about medical problems…. Nursing isn’t the right background or training for these kinds of services.

2.  Patient advocates are facilitators, but they are not decision-makers.  Patient advocates do not perform medical functions.  They provide options and background information to their patients, but never make decisions on their patients’ behalf.  Since they aren’t making medical decisions, they don’t even need a medical background.  (Not to say a medical background wouldn’t be helpful.  It might be.  It just isn’t necessary.)

3.  No matter what the background of the patient advocate, he or she knows when it is time to find helpful resources to help his or her client.  If the advocate is a nurse, then she knows when to call in a doctor or an insurance expert.  If the advocate is not a nurse, then she knows when to call in a nurse if one is needed.  That means a patient advocate can have almost any type of background and experience…. He will simply set up his system of resource people accordingly.

4.  Patients who need an advocate’s help are all over the map when it comes to what they can afford.  Someone who is not a nurse, or does not have medical training, will charge less (or should charge less) in many instances than an advocate who does have nursing training, making him more affordable than someone who does have a nursing or medical education.

5.  Finally – to make my points – some of the best known and most effective patient advocates, real pioneers in our emerging business of patient advocacy, have no nursing experience or education in their background.  Ken Schueler, perhaps the premier patient advocate in the United States and abroad, does not have an MD or RN after his name. (He did study at Sarah Lawrence in its patient advocacy course.)  Joanna Smith of Healthcare Liaison and President of NAHAC, has a social work background. Elisabeth Schuler Russell learned her skills while advocating for her baby daughter.

Smart advocates will find their training where they can, when they need it, for a particular reason.  For example, an advocate who decides to focus on cancer patients might take courses in understanding oncology.  Or an advocate who needs help understanding extensive medical terminology might take a course to better understand it.

All nurses are patient advocates.  But not all patient advocates need to be nurses to begin with.

If you are considering a career as a patient advocate, then start where you are planted.  But start.

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Updates on this post:

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Read About AdvoConnection Patient Advocates in O Magazine!

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AdvoConnection’s advocates were thrilled to have been included in an article called Someone on Your Side (A new prescription for navigating the medical maze) in the August 2010 issue of O Magazine.

The article begins with a patient story.  Tracy Cloninger figured out what so many patients do — that the healthcare system just isn’t paying enough attention.  When her endocrinologist failed to schedule her radiation treatments for her thyroid cancer, Tracy hired Hari Khalsa, the Health Whisperer (patient advocate located in Massachusetts.)

Gail Gazelle, MD, from MD Can Help was quoted extensively in the article as well.  Gail pointed out the benefits of hiring an MD as your advocate.  We should point out here that not all aspects of patient advocacy assistance would require an MD.  When you interview an advocate, you can determine whether an MD is required.

If you want to learn more about your diagnosis, Ken Schueler of HKS Advocates, another AdvoConnection member advocate, provides a suggestion for a great resource – disease advocacy groups.

And Trisha Torrey, founder of AdvoConnection and author of You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Health Care You Deserve) was also quoted.  Her bottom line?  Make sure the advocate you hire has the credentials that will help you best.  MDs, nurses, nurse practitioners and others with medical training can be important for some advocacy needs.  But sometimes an insurance or claims specialist, or even just someone who can check in with you (or your loved one) to provide drug dose reminders is all that’s needed.

Read more about Hari Khalsa, the Health Whisperer at her website.

Read more about Gail Gazelle at MDCanHelp.

Read more about Ken Schueler at HKS Patient Advocates.

Many thanks to Leslie Goldman, author of the article.  She got patient advocacy right – a new career for some, and a lifesaver for others.

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Do you want to explore the possibility of hiring a patient advocate to help you with your healthcare?  Check out AdvoConnection to find one.

Are you an advocate?  Or are you thinking about a career as an advocate?  Learn more about AdvoConnection membership.

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