Time for another update:
On the 20th of February 2018, I had the chance to attend and contribute to the Kent Surrey and Sussex (KSS) Academic Health Science Network (AHSN) event FutureFoundations (DK Reunion) .
I was invited to host along with James Lawford Davies from Hempsons health, social care and charity lawyers, London, a ‘world café’ table at the event, discussing the challenges of Legal – IG, Ethics and Consent when testing and prototyping new technologies in our Digital Health Living Lab.
The exciting part of these discussions was that we were sharing experiences with the audience, on the challenges we are facing in these uncharted territories of community based, citizens driven digital health projects. I am referring to projects where citizens, not NHS patients, are being asked to consent and contribute to the development and testing of digital health technologies. The contribution can range from, sharing of personal opinions, to providing feedback and granting access to their homes for installation of sensors. As we speak the approach includes the development of university-based research protocols that can be ethically reviewed from university Ethics committees.
The general consensus during these group meetings though, was that there is a need to develop and new framework, a new governance for ethical scrutiny in order to address the rights and needs of the citizens who wish to contribute to these developments outside of the limits of a research project and contribute to acceleration of innovation.
Our conclusions and feedback will be included in the AHSN Future Foundations microsite.
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