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The Importance of Quality Patient Advocacy to Biobanks: A Lay Perspective from Independent Cancer Patients Voice (ICPV), Based in the United Kingdom

  • Maggie WilcoxEmail author
  • Margaret Grayson
  • Mairead MacKenzie
  • Hilary Stobart
  • Helen Bulbeck
  • Robert Flavel
Chapter
Part of the Advances in Experimental Medicine and Biology book series (AEMB, volume 864)

Abstract

Biobanking in the twentieth century will become of increasing importance in health research. Regulation and governance of biobanks must be open and transparent to ensure public trust and confidence and increase donation. Effective Lay Involvement all levels in biobank organisations should be standard practice helping ensure patient benefit remains the central aim and assisting the Promotion of Biobanks and Recruitment of Donors. Properly selected, educated and supported, they become valued members of the Biobank Team. This chapter is based on the work of Independent Cancer Patients’ Voice (ICPV) in the UK and recognises that the National Health Service provides a framework which is not universal and neither is the model of patient advocacy which has been developed particularly in cancer research. However, although it has not been easy to find potential members for ICPV, nor to attract funding, we have earned the respect of our professional colleagues by our commitment in giving time and developing the skills necessary to provide effective involvement. These colleagues have enthusiastically mentored and supported us and have provided venues and tutoring for Educational Events. We are sure that patient advocates in other countries would welcome the opportunity for similar involvement and hope our experiences will be of interest.

Keywords

Patient advocacy Lay involvement in biobanking Donors recruitment Brain tumour tissue bank Breast cancer campaign tissue bank Patient-led consent 

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Copyright information

© Springer International Publishing Switzerland 2015

Authors and Affiliations

  • Maggie Wilcox
    • 1
    Email author
  • Margaret Grayson
    • 1
  • Mairead MacKenzie
    • 1
  • Hilary Stobart
    • 1
  • Helen Bulbeck
    • 1
  • Robert Flavel
    • 2
  1. 1.Independent Cancer Patients’ Voice (ICPV)LondonUK
  2. 2.KSS Cancer Partnership Research GroupLondonUK

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