VIRGINIA BIOBANKS - ADVOCATE PERSPECTIVE

Vicky Carr, M.Ed., PMP

Virginia Breast Cancer Foundation

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40 Virginia residents will die

from cancer today. 

1 American Cancer Society. Cancer Facts and Figures 2012.

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REPRESENTATIVE PERSPECTIVE

BIOBANK & REGISTRY BOOTCAMP, Genetic Alliance TCGA WEBSITE CHCHD-TCGA DOCUMENTS TO: Fellow Peer Counselors, including minority representatives Fellow ProjectLEAD grads, including minority representatives Genetic Alliance BioBank - Director Inflammatory Breast Cancer Research Foundation BioBank – Executive Director Komen Tissue Bank - Consumer Advocate on Scientific Advisory Committee Dr. Susan Love Research Foundation– Executive Director and Army of Women

Project Manager National Breast Cancer Coalition Virginia Breast Cancer Coalition Breast Cancer Researcher @ Virginia Tech

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OVERVIEW - VA BIOBANKS – ADVOCATE PERSPECTIVE

SHARED GOALS

ADVOCATE CONCERNS

WHAT CAN BE DONE TO EASE CONCERNS

HOW ADVOCATES CAN BE KEY PARTNERS

HOW TO GET MORE DIVERSE TISSUE SAMPLES

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SHARED GOALS WE WANT PROGRESS AND TISSUE IS THE KEY TO

PROGRESS

CHALLENGES

OPPORTUNITIES

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ADVOCATE CONCERNS

INFORMED CONSENT

TRUST

GETTING ENOUGH SAMPLES TO RESEARCHERS

RESEARCH BANG FOR BUCK

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ADVOCATE CONCERNS INFORMED CONSENT

REAL CONCERNS (i.e., risk of denial of medical coverage)

KOMEN CONSENT– 8,000 Women Signed!

ONLY NEED SMALL % TO SIGN

WRITTEN AT 8th GRADE READING LEVEL OR BELOW

UNDERSERVED CONSIDERATIONS

BOTTOM LINE: LET MEN & WOMEN DECIDE

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ADVOCATE CONCERNS TRUST

WE TRUST: ADVOCATE-OWNED BIOBANKS

TRUST ISSUES: GOVERNMENT-OWNED BIOBANKS

ADVOCATES INVOLVED AS KEY PARTNERS HELPS ESTABLISH TRUST (NCI: ASK US!)

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ADVOCATE CONCERNS

GETTING ENOUGH SAMPLES TO RESEARCHERS

RESEARCH BANG FOR BUCK WHAT’S YOUR PLAN TO REACH UNDERSERVED?

ALTERNATIVE COLLECTION FOR NEOADJUVANT-TREATED TUMORS

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TO EASE CONCERNS“S”TORE EXTRAS STORE ADDITIONAL RESIDUAL TISSUE

WHY GO TO $$ TO COLLECT…YET NOT MAKE TISSUE SAMPLES AVAILABLE TO RESEARCHERS WHO DESPERATELY NEED?

“T”ARGET COLLECTION – not what can get…but what need TARGETED RECRUITMENT: GAP ANALYSIS

“M”EASURE RESULTS ADD DISEASE-SPECIFIC MORTALITY RATES TO STATE CANCER PLAN

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TO EASE CONCERNS“E”MPLOY ADVOCATES

APPOINT ADVOCATES AS KEY ADVISORS ON ALL CANCER-SPECIFIC STEERING COMMITTEES & SCIENTIFIC REVIEW COMMITTEES

ADVOCATES CAN FACILITATE COLLABORATION

PATIENTS AS DRIVING FORCE TO PUSH TO DONATE TISSUE

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HOW TO GET MORE DIVERSE TISSUE SAMPLES

ASK PATIENTS!

PATIENTS/ADVOCATES CAN BE DRIVING FORCE TO PUSH TO DONATE THEIR TISSUE

THIS INITIATIVE NEEDS TO MORE CLEARLY SHOW PATIENT BENEFIT

DOCTORS HAVE TO ASK PATIENTS

EDUCATE COMMUNITY ON IMPORTANCE OF TISSUE DONATION

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SUMMARY

ADVOCATES WANT PROGRESS AND TISSUE IS KEY

ADVOCATE CONCERNS

WAYS TO EASE CONCERNS

TAKEAWAY: USE ADVOCATES TO SPEED RESEARCH & HELP RESEARCHERS GET TISSUE SAMPLES

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THANK YOU

Carla Finkielstein, Ph.D., Associate Professor, Integrated Cellular Responses Lab, Virginia Polytechnic Institute

Liz Horn, Ph.D., Director, Genetic Alliance Registry and BioBank Ginny Mason, Executive Director, Inflammatory Breast Cancer

FNDN Chris Norton, Board Member, National Breast Cancer Coalition Connie Rufenbarger, Scientific Advisory Committee, Komen Tissue

Bank at IU Simon Cancer Center Naz Sykes, Executive Director, Dr Susan Love Research FNDN Leah Wilcox, Army of Women Research Project Manager

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REFERENCES

1American Cancer Society. Cancer Facts & Figures 2012. Atlanta: American Cancer Society; 2012.(http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-031941.pdf accessed 9/9/12)

2Video of Dr. Bert Vogelstein talk, “Cancer Genomics and

their Implications for Research and Patients”, The American Association for Cancer Research, April 2, 2012, Chicago, IL. http://webcast.aacr.org/console/player/17840?mediaType=audio

3 Genetic Alliance Biobank & Registry BioBank tip archive, available by subscription, info@geneticalliance.org).