Of Honor and Yardsticks

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Of Honor and Yardsticks

If anyone decides one day to research and write the history of private, independent patient advocacy, they will likely put the genesis of the profession as 2009, when the first two advocacy organizations, NAHAC and APHA / AdvoConnection were launched. Of course, there can’t be such a thing as an organization unless there are people who are looking to be… well… organized.  I don’t know how many members NAHAC had when it opened its doors, but APHA / AdvoConnection launched with about 30 interested parties, of whom perhaps a dozen were already working successfully as privately paid advocates. We’re still in the early years. We still consider ourselves pioneers.  But it is on the shoulders of those who were already helping patients that we continue building and expanding our profession.  Importantly, we look to those early advocates to define and measure excellence in our profession; they are our YARDSTICKs. Among the pioneers was Ken Schueler who was not only a giant among advocates; he was a giant among human beings. After his own – successful – battle with Stage 4 lymphoma in the early 1990s, Ken left his high-profile job with UNICEF to start his own advocacy practice, focusing on helping people diagnosed with difficult and rare cancers. Within a few years, he had established a global reputation for his work which put patients at the center of their own decision-making based on clinically researched, evidence based treatments – not just mainstream, traditional treatments, but when available, alternative and complementary approaches, too. Importantly, Ken didn’t limit his work to the individuals who hired him. His contributions to the profession are seen every day through the Health Advocate’s Code of Conduct and Professional Standards. Sadly, in Spring 2011, Ken passed away. His loss was devastating not just to his family, and those of us who knew him and loved him – but it was a blow to our profession, too.  Ken had been a compass for private advocacy, helping us find our direction, and most certainly a compass to his clients, too. Later that year, in collaboration with Ken’s daughter Alexandra…


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