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Engaging Advocacy Organizations for Rare Cancer Research Shannon K. Bell, MSW Director, Office of Advocacy Relations DHHS, NIH, NCI Office of the Director.

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Presentation on theme: "Engaging Advocacy Organizations for Rare Cancer Research Shannon K. Bell, MSW Director, Office of Advocacy Relations DHHS, NIH, NCI Office of the Director."— Presentation transcript:

1 Engaging Advocacy Organizations for Rare Cancer Research Shannon K. Bell, MSW Director, Office of Advocacy Relations DHHS, NIH, NCI Office of the Director NCI’s Office of Advocacy Relations (OAR) Types of Advocacy Role of Advocates How Advocates Contribute Rare Cancer Advocacy Organizations in Action Keys to Successfully Engage Advocates Summary

2 Engaging advocates and advocacy organizations in the research enterprise in order to enhance research and improve patient outcomes The Office of Advocacy Relations Outreach – Collaboration – Input

3 How does OAR Engage Advocates to Enhance the NCI mission? Develop strategic relationships to: ⇒ Enhance understanding of NCI programs and priorities & influence community expectations ⇒ Identify issues critical to the community and respond in a timely and proactive manner ⇒ Facilitate understand of non-scientific barriers to research ⇒ Leverage shared interests ⇒ Engage individual advocates in the research process

4 OAR Partners Professional Societies Traditional Patient Advocacy Groups Foundations & Think Tanks External Partners National Cancer Institute

5 Types of Advocacy * Fundraising Support Policy Outreach & Education Research * Adapted from model developed by advocates Jane Perlmutter and Deb Collyar ADVOCACY

6 A research advocate brings a non-scientific viewpoint to the research process and communicates a collective patient perspective ⇒ A collective patient perspective is created when a person has knowledge of multiple disease experiences and conveys this collective patient perspective rather than his or her own exclusive experience What Is Research Advocacy? A Patient ≠ An Advocate ≠ A Research Advocate

7 How Advocates Contribute Enhance your research – Contribute lived experience, ie: experiential knowledge – Improves research feasibility and probability – Naïve or simple question can lead to: Innovative research questions Diverse perspectives Introduction of issues with colleagues – Serve as a reminder of what and who we are working for Role of Advocates at NCI Advise — Provide recommendations or advice that focuses on strategic directions or broad policy issues Formal advisory body Giving a presentation Participating on a panel Review — Evaluate and analyze research proposals and ongoing research activities Peer review Concept review Design — Contribute to development of new programs or enhancement of existing one s Participate in designing a new program or enhancing an existing one Disseminate — Translate and communicate scientific information Review and edit materials Distribute and communicate cancer related information

8 How Advocates Contribute Enhance your research – Contribute lived experience, ie: experiential knowledge – Improves research feasibility and probability – Naïve or simple question can lead to: Innovative research questions Diverse perspectives Introduction of issues with colleagues – Serve as a reminder of what and who we are working for Enhance research ⇒ Contribute lived or experiential knowledge ⇒ Improve research feasibility and probability ⇒ Bring a diverse & innovation perspective ⇒ Encourage pragmatic vs. elegant science Increase public understanding & support of research ⇒ Establish a conduit for regular communication ⇒ Break down barriers between the public & research ⇒ Allow researchers to practice discussing their work in clear and understandable ways ⇒ Enable advocates to better understand & justify research ⇒ Increase public trust through enhanced transparency & accountability How Advocates Contribute

9 Dr. Jeff Allen, Executive Director, Friends of Cancer Research Ms. Susan Braun, Executive Director, Commonweal Ms. Marie Dahlstrom, Director of Research & Development, Familias en Acciòn Ms. Gwen Darien, Executive Director, The Samuel Waxman Cancer Research Foundation Mr. Everett Dodson, Community Educator, Lombardi Comprehensive Cancer Center Ms. Joyce Wilcox Graff, Executive Director, The VHL Family Alliance Ms. Cheryl Jernigan, Board of Directors, Komen Dr. Michelle McMurry-Heath, Assoc. Director for Science, CDRH, FDA Dr. Deborah Morosini, Board of Directors, Lung Cancer Alliance Ms. Phyllis Pettit Nassi, Manager Native American Outreach, Huntsman Cancer Institute Mr. Jon Retzlaff, Managing Director of Science Policy and Government Affairs, American Association Cancer Researchers Ms. Wendy K.D. Selig, President & CEO, The Melanoma Research Alliance Mr. Josh Sommer, Executive Director, The Chordoma Foundation Ms. Arlene Wahwasuck, Retired Nurse Officer, U.S. Public Health Service Mr. Max Wallace, CEO, Accelerate Brain Cancer Cure Directors Consumer Liaison Group Current Members

10 How Advocates Contribute Enhance your research – Contribute lived experience, ie: experiential knowledge – Improves research feasibility and probability – Naïve or simple question can lead to: Innovative research questions Diverse perspectives Introduction of issues with colleagues – Serve as a reminder of what and who we are working for Advocacy Organizations in Action Rare Cancer Advocacy Organizations can Raise awareness and funds Mobilize resources Create networks and make connections

11 How Advocates Contribute Enhance your research – Contribute lived experience, ie: experiential knowledge – Improves research feasibility and probability – Naïve or simple question can lead to: Innovative research questions Diverse perspectives Introduction of issues with colleagues – Serve as a reminder of what and who we are working for Advocacy Organizations in Action 2006: Josh Sommer is diagnosed with a rare bone cancer, known as chordoma 2006: Joins the lab of Dr. Michael Kelley at Duke University 2007: Co-founds The Chordoma Foundation 2009: Funds research grant for the development and characterization of cell lines and xenografts

12 How Advocates Contribute Enhance your research – Contribute lived experience, ie: experiential knowledge – Improves research feasibility and probability – Naïve or simple question can lead to: Innovative research questions Diverse perspectives Introduction of issues with colleagues – Serve as a reminder of what and who we are working for Advocacy Organizations in Action 2010: World’s first xenograft model of chordoma is published; research funded in part by the foundation : Invest in projects to develop more cell lines and xenograft models; goal is to make 10 cell lines and 10 xenografts available to the research community Foundation plans to fund testing of several dozen FDA-approved compounds; positive results could lead to new treatment options and justification for a clinical trial

13 How Advocates Contribute Enhance your research – Contribute lived experience, ie: experiential knowledge – Improves research feasibility and probability – Naïve or simple question can lead to: Innovative research questions Diverse perspectives Introduction of issues with colleagues – Serve as a reminder of what and who we are working for In Their Own Words

14 How Advocates Contribute Enhance your research – Contribute lived experience, ie: experiential knowledge – Improves research feasibility and probability – Naïve or simple question can lead to: Innovative research questions Diverse perspectives Introduction of issues with colleagues – Serve as a reminder of what and who we are working for Advocacy Organizations in Action Von Hippel-Lindau (VHL): genetic condition involving the abnormal growth of blood vessels in some parts of the body; caused by a flaw in one gene, the VHL gene, on the short arm of chromosome 3 The VHL Family Alliance provides information for families and physicians about this disorder; supports local self-help groups for families affected with VHL International VHL Support Organizations are established on six continents

15 How Advocates Contribute Enhance your research – Contribute lived experience, ie: experiential knowledge – Improves research feasibility and probability – Naïve or simple question can lead to: Innovative research questions Diverse perspectives Introduction of issues with colleagues – Serve as a reminder of what and who we are working for Advocacy Organizations in Action Connected to 14,500 people affected by VHL in 102 countries Direct link with more than 1,000 VHL patients and 6,500 contacts in the U.S. Holds world’s largest VHL patient database; Created clearing house for patient and physician resources; Partnered to form VHL Tissue Bank Developed International Clinical Care Centers Program; 11 countries currently participating

16 How Advocates Contribute Enhance your research – Contribute lived experience, ie: experiential knowledge – Improves research feasibility and probability – Naïve or simple question can lead to: Innovative research questions Diverse perspectives Introduction of issues with colleagues – Serve as a reminder of what and who we are working for Engaging Advocates to Enhance YOUR Research Generate interest, awareness & funds Mobilize resources Facilitate relationships and create networks Infuse an innovation/diverse perspective Willingness to consult with non-scientists Develop rapport and ongoing communication Be flexible; open to diversity & innovation Engage advocates early & throughout a project

17 Engaging Individual Advocates Individuals affected by cancer Involved with an advocacy organization Activities: Review research applications Participate in scientific meetings and workshops Serve on committees Conduct usability testing Review educational materials Office of Advocacy Relations Involving Advocates: Because Science Starts and Ends with the Patient Office of Advocacy Relations website: advocacy.cancer.govadvocacy.cancer.gov ⇒ Learn more about the office ⇒ Request an advocate Science Serving People: ⇒ Information for policy advocates ⇒ Learn about NCI programs and priorities Nealon Digest: ⇒ Digest of Federal cancer news

18 Co-ordinating the Patient Voice in UK Cancer Research. David Ardron, Chair, NCRI Consumer Liaison Group. December 9 th National Cancer Institute, Bethesda, Maryland, USA. The National Cancer Research Network is part of the National Institute for Health Research

19 Where is advocacy in the United Kingdom, and Europe? –United Kingdom Cancer Research (c.400 National Cancer Research Institute (NCRI) Portfolio and c.1000 other National Institute of Health Research (NIHR) randomised controlled research trials in set up or recruiting) –Lots of other research work ongoing including academic and industry sponsored trials and studies…. –Patients act as observers, commentators and research associates in every phase of the research cycle.

20 What are the Successes in the UK? Population of all NCRI Structures (committees, conference, etc.) Significant shift in the research agenda which is reflected in the Cancer Reform Strategy priorities Representation throughout the National Cancer Research Networks Lay members of the Clinical Trials Awards and Advisory Committee CTAAC of CRUK

21 What are the Successes in the UK? Driving Force and contributors to the charitable foundations of the UK. Membership of many of the Clinical Trials Management Groups at local and national levels. Some remarkable examples of collaboration in rare cancer research in Europe and beyond, e.g. Sarcoma UK involvement in Contica-NET and EUROBONET, and with Sarcoma Alliance in USA.

22 THANK YOU.


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