November 18, 2018 / Care,Research,Webinars

WATCH: Engaging Families in Care Guideline Development – Webinar Recording

On Wednesday, November 14, PPMD hosted a webinar on patient-centeredness of recently published endocrine care guidelines for Duchenne.

Researchers from RAND Health Care and PPMD shared the results of their project that developed a new online method for engaging patients and their families and caregivers in the process of developing care guidelines. This presentation described the new method, presented a list of recommendations that individuals with Duchenne and their families and caregivers considered to be patient-centered, and discussed the reasons why some recommendations did not meet patient-centeredness criteria.

If you missed the live event, the recording can be found below.

Watch the Recording

About the presenters

  • Dmitry Khodyakov, PhD, MA, BA, is a Senior Behavioral/Social Scientist at RAND. His research focuses on methods of expert elicitation, patient and stakeholder engagement, and intervention and program evaluation. He is currently leading a project that develops an online approach to engaging patients and caregivers in clinical guideline development.
  • Brian Denger is the father of two sons who were diagnosed with Duchenne muscular dystrophy in the 1990s. He became involved with Parent Project Muscular Dystrophy, helping families locate and advocate for Special Education services and health benefit programs. Brian also participated in Centers for Disease Control supported muscular dystrophy activities and served as the Public Member for muscular dystrophy committees at the National Institutes of Health.

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