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.

The reported impact of public involvement in biobanks: A scoping review

“…6,[17][18][19][20] There are cases where public involvement is reported to have improved the accountability or transparency of the biobank or the recruitment and retention of participants. 21 Others have claimed that public involvement makes no difference to research or harms it, providing legitimacy for pre-conceived conclusions. Involvement is also criticized for 'placating the public and speeding product development, as mechanisms for engineering consent, and as framed by narrow questions'.…”

“…The data that support the findings of this study Bossert et al, 31 Dry et al, 69 Filocamo et al, 40 Forrest et al, 34 Kimball et al, 16 McCarty et al, 12 Mitchell et al, 3 Molster McWhirter et al, 50 Jenner et al, 53 Lemke et al, 61 Watson Chalmers et al, 4 Coors et al, 32 Godard et al, 47 Kimball et al, 16 Mitchell et al, 3 O'Doherty et al, 57 Olaitan et al, 67 Olson et al, 36 Rotimi et al, 62 Terry et al, 37 Terry et al, 43 Wilcox et al, 21 Lemke et al, 61 McCarty et al, 12 Mitchell et al, 3 Jenner et al, 52 Lemke et al, 60 Boyer et al, 60 Filocamo et al, 40 Levitt and Weldon, 70 Mitchell et al, 3 Terry et al, 43 Wilcox et al, 21 Rabeharisoa McCarty et al, 12 Mitchell et al, 3 Olson et al, 36 Wilcox et al, 21 McWhirter et al, 50 Lemke Godard et al, 47 Kimball et al, 16 Lemke et al, 33 Levitt, 56 Marsh et al, 62 Mitchell et al, 3 Rotimi et al, 61 Terry et al, 37 Wilcox et al, …”

“…and Weldon, 70 Molster et al, 35 Olaitan et al, 67 Wilcox et al, 21 Lemke et al, 61 Rabeharisoa Terry et al, 43 Lemke et al, 61 Watson, 64…”

“…The existing evidence on the effects, if any, of public involvement practices on biobanking, or indeed health research in general, is contested and varied 6,17‐20 . There are cases where public involvement is reported to have improved the accountability or transparency of the biobank or the recruitment and retention of participants 21 . Others have claimed that public involvement makes no difference to research or harms it, providing legitimacy for pre‐conceived conclusions.…”

“…In imposing structure on deliberation, the event designers may have gotten it wrong, and a degree of willingness to be guided by participants is essential' 24. (see also Ref 21,37)…”