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Table 4 Summary of theme, feedback and recommendations

From: Tea, talk and technology: patient and public involvement to improve connected health ‘wearables’ research in dementia

Theme Feedback Recommendation
Benefits of participating in connected health dementia research • People were interested in how connected health research could benefit prospective participants and/or others. • Information provided to prospective participants should include a) prospective benefits to individual participants and future patients and b) information on what would happen if researchers picked up something irregular, indicating a potential health problem.
• People expected researchers to intervene if devices picked up clear signs of treatable health problems requiring medical attention.
Device wearability • Individuals varied in terms of which devices they found most tolerable, useful and aesthetically pleasing to wear. • More than one type of device should be purchased, with a variety of straps and mounts in different colours, sizes and materials*.
• People preferred devices that were low maintenance and robust. • Devices to be worn for longer periods should be waterproof and should have a long-life battery*.
• Some concerns that devices might draw unwanted attention or reveal an individual’s health status. • Devices should be unobtrusive, either passing for a wristwatch or be capable of being worn discreetly elsewhere*.
Data security, usage and storage • People generally trusted University researchers to protect personal and device data and treat it confidentiality. • Software and devices used (inc. any associated 3rd party software applications) should provide the necessary security to protect personal data and ensure privacy*.
• People accepted that using certain devices for research might entail sharing data with commercial companies, but expected to be told upfront. • Information provided to prospective participants should include information on how data is transferred between the device, researchers and any third parties.
Technology set-up and support • Few of those living with dementia and their carers had access to smartphones and/or tablets of their own. • A stock of phones and/or tablets should be purchased to enable people who do not own their own suitable device to participate*.
• Some people required a high level of support to set up and use devices and applications running on smartphones and/or tablets. • Set up of devices should include an offer of in-person technical support to assist with device set up, check-ups, maintenance and troubleshooting.
Retention and engagement • Feedback on progress and outcomes could be an incentive for wearing devices for longer, making people feel valued and engaged. • Researchers should offer participants feedback on study progress and outcomes throughout the study in a choice of formats.
• Some people who acted as ‘testers‘ were unable to tolerate certain devices, whilst others unexpectedly enjoyed wearing them. • Researchers should consider offering a trial period in advance of the research, without obligation to participate in the study.
• Carers were deeply involved in the everyday routines of people living with dementia. • Researchers should offer to involve carers throughout the process of recruitment, follow ups and dissemination.
  1. *indicates recommendation has been implemented