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‘Father of patient advocacy’ honored

Former Great Neck resident Schueler’s career in health care still inspiring new field of study

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Posted: Thursday, August 2, 2012 10:26 am

When Kenneth Schueler was initially diagnosed with stage four Hodgkin’s Lymphoma in 1994 at the age 47, his daughter Alexandra said her father began to think about changing the direction of his life.

Several years after surviving the disease, Schueler founded HKS Patient Advocates.

In his more than 10-year career working as a patient advocate, Alexandra Schueler said her father helped hundreds of people and their families deal with all of the effects surrounding their struggles with cancer and other potentially terminal illnesses. 

“One of the things he always said ... was that having cancer was like being in a foreign country where you don’t speak the language,” Alexandra said of her father, a graduate of Great Neck North High School. “He saw himself as a translator. He was able to help guide his patients through this foreign land.”

Now more than one year after his death from pancreatic cancer at the age of 63, The H. Kenneth Schueler Patient Advocacy Compass Award is carrying on the work of the man who his daughter said is regarded by many of his colleagues as the “father of private-patient advocacy.”

“I’m going to be 25 next month, but losing a parent is a very difficult thing to go through,” Alexandra Schueler said. “The grieving process, even though it’s been a year, is ongoing. Having something like this is unique for someone to be a part of.”

The H. Kenneth Schueler Patient Advocacy Compass Award has been presented for each of the past two years by AdvoConnection, a service organization for private patient and health advocates.

The award is annually given to a patient advocate who closely follows Schueler’s example in the field of study he helped create, AdvoConnection founder and Director Trisha Torrey said.

“The advocate is the person who does all the research and background and hand holding that needs to be done to get you through whatever kind of situation you are in,” Torrey said. “They are the one person in their corner.”

For Torrey there has never been an advocate as adept at caring for their patients as Schueler.

“Ken was a master of pulling together evidence,” Torrey said. “It didn’t matter what language it came from. He found it. He was out in front. He was the first one. We call him the ‘father of patient advocacy.’”

“He was just more than willing,” she added, “and so generous with his time and with his efforts to grow the profession.”

Since 2011, four patient advocates from across the country have been presented with The H. Kenneth Schueler Patient Advocacy Compass Award.

Those patient advocates were chose based upon five criteria, which Alexandra Schueler said best represented her father’s work.

“My dad’s work and his example are what people are holding themselves to,” she said. “Anyone who is an aspiring patient advocate, they should know about him.”

Winners of the award receive a one year free membership to the AdvoConnection Web site and are permitted to use the award’s logo when promoting their own patient advocacy practice.

“It’s nice to see my dad’s work and everything he’s been a part of in this industry, its been so nice for me to see, how much it matters to people,” Alexandra Schueler said. “It’s kind of bittersweet because it’s so nice to be able to see that people are trying to be more like him. Even though I miss him so much, it’s a really nice way to keep his memory alive.”

Before becoming a patient advocate, Schueler worked for nearly 30 years with UNICEF, the World Health Organization and the U.S. government as a primary health care consultant. His work specialized in the development of innovative medical devices to reduce adult and infant mortality, a bio of Schueler on HKS Patient Advocates Web site said.

Schueler then went on to found HKS Patient Advocates in 2000 after his bout with stage four Hodgkin’s Lymphoma.

“He was diagnosed with stage four,” Torrey said. “Anyone else would have died and he just determined that he was going to find out how to beat it.”

That struggle to beat cancer eventually helped Schueler better care for the terminally-ill patients he would advocate for over the course of his 10-year career leading HKS Patient Advocates, Torrey said.

“The health care is more difficult than ever before,” she said. “Wherever there’s a void like that you need someone to rise to the occasion, to fix it and Ken was one of the pioneers. He was one of the first people who realized you could have a business by holding people’s hands and getting them through it.”

But that was not all that Schueler did for his patients.

Torrey said Schueler excelled in researching new types of medical procedures, practices, medications and non-traditional healing methods that helped patients better deal with their illnesses.

“It was all about where the research would lead him and the evidence and the best practice,” Torrey said of Schueler. He established this expertise that was just beyond (anyone else).”

Along with his daughter, Schueler is survived by his mother, Ruth, who is a Great Neck resident. He is also survived by siblings, Tyler and Denise.

With the award created in his name, Torrey said she hopes AdvoConnection is honoring Schueler’s life and career.

“What we’re trying to establish with this award is that he will be recognized as a pioneer in a profession that didn’t exist before he started,” Torrey said. “He is the father of private patient advocacy.”

“I cant even begin to tell you,” she added. “There are still times I think, ‘oh Ken would know that answer. Ken could help us with this. He’s missed not just as the person he was, he was kind of bigger than life.”

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