Towards ‘Engagement 2.0’: Insights from a study of dynamic consent with biobank participants

Abstract

Web 2.0 technologies have enabled new methods of engagement, moving from static mono-directional sources of information to interactive user-led experiences. Use of Web 2.0 technologies for engagement is gaining momentum within the health sector however this is still in its infancy in biobanking research. This paper reports on findings from focus groups with biobank participants to gauge their views on a Web 2.0 dynamic consent interface. The findings from this study suggest that participants would welcome more interactive engagement with biobanks, and the opportunity to hear more about how their data and samples are being used in research. We propose that by adopting Web 2.0 tools for dynamic consent, we can move towards an ‘Engagement 2.0’ model whereby research participants have the opportunity for more interactive engagement with medical research, setting up a two-way communication channel between participants and researchers, for the benefit of both.

Implementation of Electronic Informed Consent in Biomedical Research and Stakeholders’ Perspectives: Systematic Review

“…However, research participants argue for caution (to not make it feel like a test) [ 50 ]. In addition, interactive technology and a printed consent form offer the opportunity to review information giving participants the time to learn about the research [ 15 , 16 , 37 , 39 , 50 ]. Patients considered a paper-based form more permanent and suggested implementing a printout option in the electronic informed consent technology [ 39 ].…”

Population Biobanks’ Governance: A Case Study of Knowledge Commons

“…The authors points out that "the consent and willingness of patients and the public to participate in this research will be vital and their involvement will help ensure that the trust and transparency, which is needed, can be maintained (Wilcox et al 2015: 183). Another recent study, also among patient in the United Kingdom, shows that participants would welcome a more interactive engagement with the biobank and that they would welcome more information through an online interface (Teare et al 2015).…”

Dwarna: a blockchain solution for dynamic consent in biobanking

“…This said, sharing sensitive data is also a process that incurs risks, not least the risk of losing control over this data. Today, control is not only desirable [17], but demanded by the research partners themselves [8,18,19] and emphasized in the European Union's GDPR, where recital 7 states that "natural persons should have control of their own personal data" [20].…”

“…Dynamic consent is normally delivered via an IT interface that serves as a communication system between stakeholders; namely the biobank managers and researchers at one end, and the research partners at the other end. In this way, existing dynamic consent implementations, such as those by the NHS [25] or RUDY [8,26] in the UK, and the Cooperative Health Research in South Tyrol (CHRIS) [27,28] allow research partners to become active members in the research process [2].…”

“…Dynamic consent is one protocol of consent that is ethical and complies with the law and regulations [2,8]. It aims to give individuals the opportunity to be better informed about their consent choices and the ongoing research process in general, and gives them control over how their biospecimens and data are used.…”