Using workshops to design a platform for future ‘wearables’ dementia research
Tackling dementia has been identified as an international priority for research.
One emerging area of research is exploring how smartphones and ‘wearable’ devices – such as activity trackers, worn on or close to the body – can be used to effortlessly generate detailed data about patterns of everyday activity. In combination with data from other sources (eg clinical records), the hope is that this will lead to new insights into the detection, prediction, treatment and understanding of dementia.
The Medical Research Council recently established the Dementias Platform UK (DPUK), a multi-million-pound investment to drive forward dementia research, collecting and collating information to create unique data sets and a quarry of new evidence.
As part of DPUK, The University of Manchester was tasked with creating a ‘sensing platform’ to accelerate dementia research using connected health devices, such as smartphones and wearable activity trackers. This involved procuring a pool of suitable devices and developing software designed to securely receive and store any data generated. To ensure devices were both suitable for data gathering purposes and acceptable to future research participants, we sought feedback from patients and the public.
- In principle, patients and the public supported plans for connected health dementia research and were willing to wear devices, provided: 1) they understood the aims, methods and purpose of the study, 2) they gave their consent, and 3) data was stored securely and confidentially.
- Individuals varied in terms of which devices they preferred and the support they needed for set-up. The more popular devices were waterproof, low-maintenance, unobtrusive and gave personalised feedback.
- People wanted feedback on research progress and outcomes. They thought this would make participants feel valued and encourage ongoing participation. They expected researchers to intervene if there were clear signs of treatable health problems requiring attention.
- The sensing platform should be open to storing data from a variety of devices, available now and in the future.
- A range of devices should be purchased in varying sizes, colours and materials. Devices should be waterproof, have a long-life battery and, ideally, pass for a watch.
- Any devices and software used as part of dementia research, whether existing or new, should provide the necessary security to protect personal data and ensure privacy.
- When recruiting participants in future studies, one-to-one support should be available to help set-up devices and troubleshoot problems. Smartphones and /or tablets should be available for those without their own devices.
- Information provided to prospective participants should include information on confidentiality, data transfer, benefits to individuals and what would happen if researchers were to pick up any irregularities.
- Dr Lamiece Hassan, School of Health Sciences, The University of Manchester
- Professor John Ainsworth, School of Health Sciences, The University of Manchester
- Dr Angela Parker, School of Health Sciences, The University of Manchester
- Caroline Swarbrick, School of Health Sciences, The University of Manchester
- Professor Caroline Sanders, School of Health Sciences, The University of Manchester
Additional Universities/External Partners
- Dementia Platforms UK Medical Research Council
- The Farr Insitute of Health Informatics Research