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The Power of a Patient Advocate Narrative

The Power of a Patient Advocate Narrative. Jane Perlmutter LISTEN Conference October 25, 2013. Who Am I?. Long-time cancer survivor Experience in academia, corporate R&D and operations Currently independent management consultant Lot ’ s of experience and interest in clinical trials.

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The Power of a Patient Advocate Narrative

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  1. The Power of a Patient Advocate Narrative Jane Perlmutter LISTEN Conference October 25, 2013

  2. Who Am I? • Long-time cancer survivor • Experience in academia, corporate R&D and operations • Currently independent management consultant • Lot’s of experience and interest in clinical trials

  3. A Cancer Journey      “Well” Person Diagnosis      Patient Treatment “Survivor” Healing, Activism Etc.  Advocate Based on: Clark EJ, Stovall EL. Advocacy: the cornerstone of cancer survivorship; Cancer Practice. 1996; 4;239-44.

  4. An Advocate Journey  Personal Advocate   Information Seeking, Communication Skills   Peer Advocate Problem Solving, Negotiation Skills Public Advocate  Based on: Clark EJ, Stovall EL. Advocacy: the cornerstone of cancer survivorship; Cancer Practice. 1996; 4;239-44.

  5. Choosing an Advocacy Direction Interest Skills Opportunities Passion

  6. Types of Advocacy PeerSupport Fundraising Education & Awareness Research Public Health Policy

  7. Types of Research Advocacy Based on: Perlmutter J, Bell SK, Darien, G. Cancer Research Advocacy: Past, Present, and Future. Cancer Research. 2013; 73(15) 4611-15.

  8. Allocating Research Funding

  9. Participating in Research Teams

  10. Planning Implementing Clinical Trials

  11. Translating & Disseminating Research

  12. Research Policy and Oversight

  13. www.ispy2.org I‐Spy 2: How Advocates Are Involved in a Trial with an Innovative Design, Business Model, and Partnerships Jane Perlmutter janep@gemini-grp.com November 21, 2013

  14. Four Types of Advocate Involvement • Advocates involved in sub-groups (~35) • Advocate specific projects (~40) • Patient advocacy at trial sites (initially about 20; currently none) • Informed advocacy (>175) I-SPY 2

  15. Advocate Specific Projects

  16. Example Changes Suggested by Advocates • Adoption of two stage consenting process (screening and treatment) • Decision to inform patients of their treatment during the consenting process (i.e., non-blinded study) • Decision to inform patients when drugs they are taking are dropped and allowing them to choose whether or not to complete their treatment with such drugs

  17. Example Changes Suggested by Advocates (continued) • Minimize time for establishing patient eligibility • Schedule procedures for patient convenience • Emphasis of patient-relevant criteria into the drug selection process • Inclusion of data collection about reasons patients decline to participate in the trial • Availability of patient travel reimbursement for research visits • Use of a peer support hotline forpatients considering and on trial

  18. Being an Excellent Research Advocate • Two-way communication with diverse patients • All patients are the same • Each patient is unique • Learn about the relevant science, but don’t expect to become an expert • The disease • The research process • The “Key Opinion Leaders” (KOLs) • Be comfortable and participate • Be professional • Ask questions

  19. Find Mentors • Experienced advocates • Investigators • Grad students & fellows • Conference attendees

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