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Who is Listening to the Patient Voice?

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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.

What do consumers want? How can organizations work with them to include them in constructive ways?

Who is Listening to the Patient Voice?

  • Patients and the regulatory process - appraisal, approval, access issues
  • Patient involvement in clinical trials -  design, recruitment and retention
  • Patient involvement in the design of hospital cancer services
  • The patient voice in kidney cancer guidelines/pathways

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