100 Ways of Using Data to Make Lives Better

Dementias Platform UK (DPUK): Using Public Workshops to Design a Platform for Future ‘Wearables’ Dementia Research

Published on: 14th August 2017

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Citizen Driven Health
Case Study 87

Project Lead: Lamiece Hassan, Sabine Van der veer, Joanne Taylor, University of Manchester

Researchers at The University of Manchester have investigated the link between people’s BMI measurements and obesity-related cancers.

The Challenge

Using interactive workshops, researchers at The Farr Institute used feedback from people living with dementia, carers and members of the public to inform decisions about a platform to support future dementia research using ‘wearable’ devices.

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 (e.g. clinical records), the hope is that this will lead to new insights into the detection, prediction, treatment and understanding of dementia.

Nonetheless, there are still challenges associated with collecting, storing and linking these data. To maximise the potential of this avenue of research, future projects need to be understandable and acceptable to prospective participants, as well as scientifically rigorous.

The Workshops/Involvement

With funding from DPUK, researchers at The Farr Institute were tasked with creating a ‘platform’ to enable researchers to plan and conduct research using wearables in future.

This included buying a pool of smartphones and wearable devices available for loan and developing software designed to securely receive, store and link these data with other sources. To shape the development of the platform, a series of workshops were held with members of the public, including people living with dementia or cognitive impairments, older people with no memory problems and carers.

As part of these workshops, people had the chance to borrow devices and try them out at home, helping them to reflect on their suitability for future participants.

The Results

In principle, members of the public supported plans for dementia research involving wearables and were willing to wear devices, provided they understood the study, gave their consent, and data was stored securely and confidentially.

Individuals varied in terms of which devices they preferred and the support they needed for setting it up. The more popular devices were waterproof, low-maintenance, unobtrusive and gave personalised feedback. People wanted feedback on research progress and outcomes to make participants feel valued and encourage ongoing participation.

The Impact

This study was used to shape a platform for future wearables research. The resulting DPUK wearables platform has been designed to meet the needs of both researchers and prospective participants. It will contribute to the global effort towards accelerating dementia research by supporting a range of future research projects that involve collecting, storing and linking wearables data. Aspects of research design, set up and support were also identified, that could potentially support sustained engagement from participants in future.

Enquiries to Kate Holmes, Communications and Public Engagement Coordinator, The Health eResearch Centre:
kate.holmes-3@manchester.ac.uk

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