Privacy and the Quantified Self in Healthcare Settings

CRISP 2017 CPDP Panel

CRISP hosted a panel on ‘Privacy and the quantified self in healthcare settings’ at the 2017 CPDP (Computers, Privacy and Data Protection) conference in Brussels on 27 January 2017. Four panelists gave short talks on a variety of topics covering theory, policy and practice relating to quantified self and healthcare. The four speakers were: Dr Tally Chatzakis (Open University), Dr Sjaak Nouwt (Royal Dutch Medical Association), Dr Ingrid Geesink (Rathenau Institute) and Roger Taylor (Open Public Services Network). Their contributions elicited some stimulating questions from the audience. A YouTube recording of the panel session can be found on the CPDP YouTube page.

The panel description was as follows:

The self-tracking of biometric, psychological and behavioral data is enjoying unprecedented levels of engagement through what has been called the Quantified-Self (QS) movement. While for many the benefits of getting fitter, stronger or better are important, such practices challenge how individuals practicing QS perceive and manage their privacy boundaries. QS has created new types of information about personhood, but unlike keeping a personal diary, electronic surveillance is an integral part of these new forms of lifelogging. Technology companies supplying the QS Apps are granted permission to monitor individual activity second-by-second. App providers (and often 3rd parties) can record and analyse personal data and ‘get to know’ life-loggers. More recently corporate and public healthcare providers are encouraging individuals to use QS style health management apps, and share the data with their physicians and other primary care providers. Drawing on academic, activist, practitioner and regulatory perspectives this panel examines the privacy issues which arise in this new domain of information practices.

Key questions:
What are the individual privacy issues which arise in the context of QS?
What are the systemic privacy issues which arise in healthcare settings where QS data are gathered and used?
How might these privacy issues be addressed in policy and in practice?
What other ethical or social issues are presented by QS?

Professor Kirstie Ball, St Andrews University
Dr Jason Pridmore, Erasmus University, The Netherlands
Dr Tally Chatzakis – The Open University, UK
Dr Sjaak Nouwt – Royal Dutch Medical Association, The Netherlands
Dr Ingrid Geesink – Rathenau Institute, The Netherlands
Roger Taylor – Open Public Services Network, UK

CPDP YouTube recording of 2017 CRISP CPDP Panel: