Just How Many Patient Advocates Are There?

One of our AdvoConnection members asked me the question a few weeks ago: How many patient advocates do I think there are?

I’ve got some educated guesses.

But there are actually three parts to the question. Just trying to figure out how many there are is only the first part. Figuring out the trends is also important. And figuring out who can actually help patients in the ways they need help is the other.

Here are the answers I gave her. See what you think. Add or subtract. Change direction. Whatever you think…. because you and your role are found in these notes:

(As of April 2012)

Private Practice in the US and Canada

I would say there are 150 – 200 in private practice – people in business for themselves, or working in small private practices. They are located throughout the US and Canada, but the majority are found in pockets: New England, New York City, Phoenix-Tucson, Bay Area of California. Coming a close second are the Greater Los Angeles, Denver and Seattle areas. There are also many geriatric case managers throughout Florida, most functioning as patient advocates, too, even if they don’t call themselves that.

Recently, a new breed of private advocates have become available. They are private, independent contractors, working for larger private advocacy companies that provide them with insurance, marketing and back-up expertise. As these companies continue to dot the landscape, the numbers of private, paid-directly-by-the-patient/client advocates will grow exponentially.

Part Time Private Advocates

There are another 250 to 300 who are either working part time or are working elsewhere for the moment, but getting ready to jump into full time practice. Many of them are PACE members of AdvoConnection, and they are using what they learn to build their foundations. They will be tomorrow’s private practice owners, added to the first group above.

Hospital and Insurance Advocates and Navigators

There may be a few thousand people with the employed title “advocate” or “navigator” or “ombudsman” or “patient representative.” They are working as hospital advocates, as nurses working within the HC system, as hospital navigators, as insurance-employed advocates. These folks want to be invested in their patients, but because they are drawing paychecks from someone else – someone who has more interest in saving money than in saving their patients – they can’t be. They can only help so far.

Many in this group wish they could do their work as private advocates do – invested in their patients (clients) 100 percent, yet they know their paychecks will stop if they don’t follow their employer’s rules. Their hands are tied.

The difficulty with this group is that patients feel relieved to have someone to help (as they should) – until they realize that these employed people can’t provide the real help they need.

It’s up to private advocates to help clients understand the distinction.

Volunteer Advocates

There are tens of thousands who are volunteer advocates – for family, friends, neighbors, co-workers. They pitch in and help out as needed. Some work with advocacy organizations; the 10-year post breast cancer patient who helps a woman who has been newly diagnosed, or the volunteer for the Patient Advocate Foundation.

These people can be a god-send, no doubt about it. But their level of professionalism will rarely be the same as that of a private advocate.

Similar to hospital and insurance advocates and navigators, it’s up to private practice advocates to make sure potential clients understand the distinction.

So why are these numbers important to you?

It’s about the trend. Note the steep climb in numbers – the trend toward providing patient-clients with the help they need. This comes about because confusion continues to grow in the healthcare space. Whether we deal (or don’t) with healthcare reform in the US, and as the number of primary care doctors continues its steep decline, patients realize they need someone to help out – an objective professional who can help them make sense of their medical journeys – from symptoms, to diagnosis, to decision-making, to paying bills.

That’s why the world of patients needs you! They are frustrated and confused. They know that doctors can’t keep up. They know that money has an influence on the care they receive, and when they realize that help is available, they want it.

When AdvoConnection launched in late 2009, we had only 40 members, only about 25 of whom were in practice. In 2-1/2 years, we have grown more than 750%.

But how many private advocates do we need?

In our lifetimes there will never be enough private advocates to go around. Think about it this way: there are 800,000 physicians in private practice – and they can’t keep up. It can take months to get an appointment. There just aren’t enough. It will be decades – maybe 25 years – before there are enough private advocates for the need.

I guesstimate that by 2015, there will be only a few thousand private advocates. As the profession grows, we will look back on these days as the pioneering days of advocacy. If you’re in practice today, you’ll be able to tell your grandchildren you were one of the first!

And if you aren’t in practice yet, you should be. Patients need you, and the longer you wait, the more they are suffering without you.

We’ll do another check in a year to see where we are…. will you change your role between now and then?

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2 thoughts on “Just How Many Patient Advocates Are There?”

  1. At the recent TEDMED meeting in DC I was chatting with a pediatrician who said he was a patient advocate. It got me thinking – my definition is the person is first a patient themselves, then an advocate for others.

    Everyone else is a patients’ advocate.

    Different. I also told this very nice, caring doctor that his perception of a cancer diagnosis, is different than those of us who are ‘laypeople’. When we hear the diagnosis, we don’t know a d*mn thing about it.

    How we physically, mentally, emotionally handle it, is what we have in common. But how we understand the disease, not so.

    Just my thoughts.

  2. Thanks Trisha – I found this to be very comforting yet exciting, as I’m just forging my way into this new Brilliant Career

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