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Robin and Joyce speak with Lesley Bennett, state coordinator for the National Organization for Rare Disorders (NORD) in Connecticut, about the importance of the voice of the “consumer” in healthcare as in retail or other “marketing” relationships.
Joyce and Lesley recently attended the annual meeting of the New England Regional Genetics Group (NERGG) in Portsmouth, New Hampshire. What role should consumers play in a professional organization? NERGG has included consumers in its governance for the past 38 years, and yet they are still struggling to define a clear role for consumers in the workings of the organization.
We asked Lesley for a picture of herself, and she sent us a picture of her daughter Kelly, whose rare condition led Lesley into this work. Kelly is still traversing her “diagnostic odyssey.” She and her family and working hard with many doctors to find the best diagnosis and treatment for her rare condition.
What do consumers want? How can organizations work with them to include them in constructive ways?
Who is Listening to the Patient Voice? Are the doctors themselves listening to the whole story? As Dr. Jerome Groopman says in his book, HOW DOCTORS THINK (Boston, 2007), “This book was written primarily for laymen, though I believe physicians and other medical professionals will find it useful. Why for laymen? because doctors desperately need patients and their families and friends to help them think. Without their help, physicians are denied key clues to what is really wrong. I learned this not as a doctor but when I was sick, when I was the patient.” [page 8]
