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Tag: patient advocacy

How Patient Activation Made It Possible to Thrive with Kidney Disease

By DAVE WHITE

It had been 10 years since I’d seen a doctor when I arrived at the Emergency Room at George Washington University Hospital in October 2009. I was able to climb the first flight of stairs, but after I froze on the second, they brought me in on a wheelchair.

That was the first time I heard the dreaded words, “Your kidneys aren’t working.” I was put on dialysis immediately, and my life transformed into a series of tests and procedures. But even after three weeks at the hospital, it didn’t sink in that there was no cure.

I checked most risk factors for kidney disease: I ate the wrong foods, smoked more than a pack of cigarettes a day, drank too much beer, and didn’t exercise much. But the biggest risk to my health was not getting regular check-ups. I didn’t think I needed them, or that I had a part to play in my own health.

I hated going to dialysis three times a week. Since I could no longer work, the $20 cab fare each way was an expense my wife and I struggled to afford, so I skipped often. When a nurse warned me that if I missed three sessions in a row I would have to be dialyzed at the hospital, I decided this meant I could get away with one session a week.

The care plan I received from my providers called me “non-compliant” seven times. I felt they had written me off as a lost cause and saw no point in working with them either.

Finally, I was called into a meeting with six nurses, social workers, and clinic staff. When I said I skipped dialysis because money was tight, the charge nurse said, “We’re going to get you resources for transit and help you plan good meals.”

I was shocked – I didn’t know how support services worked. The nurse continued “But you have to do your part or you’re not going to be around much longer.”

No one had said this in such blunt terms before. I left the room, went home, looked at myself in the bathroom mirror, and said, “They’re right. You can do better. You have to do better.”

Fourteen years later, I am lucky to be alive to see the Centers for Medicare and Medicaid Services (CMS) include measures that place the patient’s voice at the center of clinical care. CMS has recognized that supporting patient activation, building a person’s knowledge, skills, and confidence around managing their health, and addressing social needs is critical to helping people like me get the support we need to get and stay healthy.

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THCB Gang Episode 17, LIVE 7/9 1PM PT/4PM ET

Episode 17 of “The THCB Gang” was live-streamed on Thursday, July 9th! Watch it below!

Joining me were some of our regulars: patient advocate Grace Cordovano (@GraceCordovano), health economist Jane Sarasohn-Kahn (@healthythinker), WTF Health Host Jessica DaMassa (@jessdamassa), and guests: Tina Park, partner at Diagram (@diagramoffice) & Shannon Brownlee, Senior VP at the Lown Institute (@ShannonBrownlee). The conversation focused on asynchronous care, the gap between patients & technology, and the Supreme Court ruling on employers’ ability to limit women’s access to birth control coverage. It was a great and engaging conversation with some of the top health care experts in the field.

If you’d rather listen, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels — Zoya Khan

A Letter to Ms. Judy Faulkner & Mr. Tommy Thompson

By GRACE CORDOVANO PhD, BCPA

Being a patient or a carepartner can be a lonely, powerless place.

There’s no high powered legal or lobbying team to help support you in your or your loved one’s health care journey. There’s no PR team at your beck and call. There’s no advisory board, no executive committee, no assistants, no chatbots or AI-powered technology coming to the rescue. There’s no funding or a company sponsoring your efforts.

There’s no course in how to be a professional patient or carepartner.

There’s no one there in the stillness and dark of the night, when you are in the quiet of your thoughts, the privacy of your personal space, where there are fleeting moments that you don’t have to be strong and courageous. There is no one there to console you, support you as you lay there willing to make a deal with the devil for the slightest glimmer of hope, the slightest bit of clarity, or slightest bit of peace.

As a the carepartner to a loved one who is sick or disabled, many wouldn’t second guess charging head first through a thousand wielded swords if it meant a hope or a cure.

As an advocate, the majority of the work you do is self-created, self-supported, and unpaid. A calling. An undeniable, magnetic force that pulls you in because you cannot turn a blind eye no matter how hard you try. Because you cannot bear witness to human suffering and not do anything. Because you’ve been there and you can relate to another’s pain, grief, and sense of hopelessness and it is unacceptable to not help ease the heaviness of another’s burden.

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THCB Spotlights: Todd Clardy, EVP Marketing at Accolade

Today on THCB Spotlights, Matthew interviews Todd Clardy who is the EVP of Marketing at Accolade. Accolade is a company well-known for being in employee/patient advocacy. They’ve created an advocacy model that focuses on creating an outstanding member experience and supporting patients through their whole journey, whether it’s an acute or chronic condition or helping people maintain their health and wellness. Where do Amazon, Google and Haven fit into this space? Find out how many people have got this and how Accolade will be expanding going forward.