title: The Importance of Quality Patient Advocacy to Biobanks: A Lay Perspective from Independent Cancer Patients Voice (ICPV), Based in the United Kingdom.
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.
authors.affiliation: Independent Cancer Patients' Voice (ICPV), London, UK. maggie@icpv.org.uk.
authors.forename: Maggie
authors.initials: M
authors.lastname: Wilcox
authors.affiliation: Independent Cancer Patients' Voice (ICPV), London, UK.
authors.forename: Margaret
authors.initials: M
authors.lastname: Grayson
authors.affiliation: Independent Cancer Patients' Voice (ICPV), London, UK.
authors.forename: Mairead
authors.initials: M
authors.lastname: MacKenzie
authors.affiliation: Independent Cancer Patients' Voice (ICPV), London, UK.
authors.forename: Hilary
authors.initials: H
authors.lastname: Stobart
authors.affiliation: Independent Cancer Patients' Voice (ICPV), London, UK.
authors.forename: Helen
authors.initials: H
authors.lastname: Bulbeck
authors.affiliation: KSS Cancer Partnership Research Group, London, UK.
authors.forename: Robert
authors.initials: R
authors.lastname: Flavel
mesh_terms: D001932:Brain Neoplasms / Q000473:pathology*; D001943:Breast Neoplasms / Q000473:pathology*; D005260:Female; D006801:Humans; D010344:Patient Advocacy; D014015:Tissue Banks; D006113:United Kingdom
keywords: Brain tumour tissue bank; Breast cancer campaign tissue bank; Donors recruitment; Lay involvement in biobanking; Patient advocacy; Patient-led consent