The Importance of Quality Patient Advocacy to Biobanks: A Lay Perspective from Independent Cancer Patients Voice (ICPV), Based in the United Kingdom.
Adv Exp Med Biol
; 864: 171-83, 2015.
Article
em En
| MEDLINE
| ID: mdl-26420622
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.
Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Defesa do Paciente
/
Bancos de Tecidos
/
Neoplasias Encefálicas
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Neoplasias da Mama
Limite:
Female
/
Humans
País/Região como assunto:
Europa
Idioma:
En
Ano de publicação:
2015
Tipo de documento:
Article