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Sad News and a Heavy Heart

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Ken Schueler, perhaps the godfather of patient advocacy, a mentor to many of us, and a dear friend of mine, passed away Thursday morning, May 19, at his mother’s home in Great Neck, NY. Ken was diagnosed several weeks ago with pancreatic cancer. He attempted chemo, but had a very difficult time with it. When I spoke with him last week, he was very weak, but upbeat and hopeful the chemo would help extend his life. Ken was a man of incredible compassion and extensive knowledge. My faith in his abilities grew even more so when he consulted with my […]

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Craving Inside Information – from the Outside

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I mentioned last week that a dear friend has been diagnosed with a terminal disease. I’ve known this for several weeks now, yet it still catches in my throat many times a day. My work in patient empowerment and advocacy provides chafing reminders way too often that my friend is sick and that there is nothing – not.a.thing – I can do to help him. Exacerbating my heartbreak is the fact that I am hundreds of miles away from where he lives, and I am a friend that doesn’t know his family. That means that getting information is very difficult

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It’s the Universe Calling: Time for Plan B

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A few months ago, I was invited to speak in June during a one-day program for members of the Pennsylvania Bar Association on the topic of recovering from a catastrophe. Attorneys who attend will learn about the things they need to do should something devastating happen in their lives (an accident, caregiving for a loved one, a fire, whatever….) About ten days ago, I heard from a dear dear friend that he has been diagnosed with a terminal disease. Prognosis, just a few months. I am devastated – my heart just aches for him, his family, and yes, for myself,

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What Health Advocates Can Learn from 9/11

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With the demise of Osama bin Laden, I’m reminded of experiences I can share with patient and health advocates and navigators that will help us do our jobs better. Many readers of this blog know that the reason I do the work I do is because I was diagnosed with a rare, terminal lymphoma in 2004. Being told I had a terminal disease was heart-stopping and terrifying. Even today there are certain triggers that drum up all that emotion. Post traumatic stress rears its ugly head…. Of course – I don’t wish that for anyone who ever reads this blog!

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Why Do You Choose to Be a Patient Advocate or Navigator?

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During the past few years of connecting with patient advocates and navigators, I’ve asked dozens (maybe hundreds) of people why they chose patient advocacy work. Each person has one, individual, personal answer to that question, but there are an astounding number of similiaries. Among them: They believe they were cut out to help patients in need. They have had some sort of experience that tells them that whatever they’ve been doing to that point is no longer enough. Working with patients, helping them navigate and find improved outcomes from the healthcare system, feels like a higher calling. They don’t like

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Insurance Reimbursements? Not Exactly a Pot of Gold

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A recent post from a member advocate in our AdvoConnection Forum asked if any of our members have experience with working with self-funded insurance to offer patient advocacy services. Wouldn’t that be a great way to establish a big client, with a pot of money that was ready to be paid to private patient advocates? There were no replies to the question. That doesn’t mean that no one has experience with these reimbursements. It just means that no one replied to the question. BUT – the reasons no one replied may be a version of the following:

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Calling All Health Advocates – And Those Who Wish to Be One

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I’m excited to announce the launch of the new website (and therefore the agenda) for this year’s AdvoConnection Business Institute! This is something AdvoConnection’s members have requested for more than a year – one stop shopping – one place they can go to build their skills, improving those aspects of an advocate’s business that need support – from insurance (does my nurses insurance rider cover me?) to legal matters (forms and contracts) to marketing (do I really need a Facebook page?) to business tools (tracking clients, an inexpensive 800 phone number and more) to networking with fellow advocates and not-yet-advocates

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