Assistive Technologies and Issues Relating to Privacy, Ethics and Security

Abstract

Emerging technologies provide the opportunity to develop innovative sustainable service models, capable of supporting adults with dementia at home. Devices range from simple stand-alone components that can generate a responsive alarm call to complex interoperable systems that even can be remotely controlled. From these complex systems the paradigm of the ubiquitous or ambient smart home has emerged, integrating technology, environmental design and traditional care provision. The service context is often complex, involving a variety of stakeholders and a range of interested agencies. Against this backdrop, as anecdotal evidence and government policies spawn further innovation it is critical that due consideration is given to the potential ethical ramifications at an individual, organisational and societal level. Well-grounded ethical thinking and proactive ethical responses to this innovation are required. Explicit policy and practice should therefore emerge which engenders confidence in existing supported living option schemes for adults with dementia and informs further innovation.

Appendix: Checklists to Assist Using Technology with People Who Have Dementia

When technology is used checks need to be in place that ensures the following questions are addressed:

• Has consent been sought from the person with dementia about the use of technology in their care, using skilled personnel and appropriate communication methods?

• Has a date been set to review the use of this technology intervention? Is it accepted by the user and does it support the care process?

• On what aspects is the effectiveness of the assistive technology in the care of the person evaluated and by what methods?

1.1 For Professionals and Field Test Personnel

• Professional carers and system administrators must have knowledge of key principles of healthcare confidentiality: privacy, explicit or implicit consent, and conditions for non-consensual disclosure.

• Since persons with dementia are vulnerable, they shall be given all necessary support to understand the confidentiality issues and express their wishes. The individual’s ability to understand, retain and weigh up information as well as communicate their decision should be examined.

• The consent should be given until end-of-service, i.e. until end of user test, death or explicit withdrawal of consent, so that the consent also covers later stages in the disease when the person with dementia might be incapable of giving consent.

• Personally identifiable data shall be deleted and made non-recoverable on the test equipment as part of uninstallation.

• Using staff from other agencies requires explicit consent and possibly formal information protection agreements.

• Necessary secondary uses of information (for example, for payments or management) requires explicit consent.

• The basis for the configuration of the device should at all times be the subjective needs and wants of the person with mild dementia.

• The benefits of information sharing with the informal carer should be discussed with the person with dementia.

• In emergency situations minimum necessary confidential user information may be used or disclosed.

• Confidential data relating to persons with dementia shall be stored on secure computers, with up-to-date protections against unauthorised access and malware.

1.2 For Developers

• Security analyses should be performed at unit and system levels. It should be performed at the specification stage, and as part of evaluation. The security analysis should address requirements for confidentiality, data integrity, availability and accountability. It should specifically analyse malware threats and the potential for system abuse by users.

• An authorisation model should be defined so that any access to identifiable personal data is strictly controlled. Person with dementia access should be made by means of implicit or automatic device authentication. Accesses by all other users (e.g. carers, researchers and administrators) should require user-level authentication.

• A service model should be defined so that the persons with dementia and their carers can be informed of what kinds of information is being recorded and for what purposes.

• Build the system so that it minimises the potential to stigmatise the user. This means that devices should preferably be perceived and used as normal technology artefacts, also by people that do not suffer from dementia.

• There must be a generic way to access stored data, for system administrators (for research, emergency or legal purposes), and for the person with dementia’s access to own stored data (as guaranteed by Data Protection laws).

• Data should be stored with as little identifying information as possible. If possible, the system should be partitioned into one part where identifiable personal data exist, and other parts where it is impossible to trace to which physical person some data belong.

• The personal codes that are used in data collection for research purposes, must NOT be reused in the normal operation of the system.

• Only near-future data should be cached in other nodes than where the original data reside.

• Data that are not needed anymore for the operation of the system should immediately be made inaccessible.¹

• All communication links should be secure. Encrypted files and databases must be used for storing identifiable personal data.

1.3 For Researchers

• Researchers that execute the evaluation of the prototype with user dyads shall have no business dependencies themselves with commercial organisations within or outside the project consortium.

• Personally identifiable data must be stored in encoded form.

• Mapping collected data to individuals must use keys stored separately in locked closets.

• Only encoded data will be transmitted between sites.

• Be sensitive to the changing clinical phases of dementia that may influence the subjects’ autonomy and capacity.

• Under no circumstances permit reporting of details during dissemination that would allow the identification of any subject involved.