Innovative new ways of collecting data highlighted in pan-Northern study

Date: 13 November 2018

New ways in which researchers can use digital technologies, including wearable devices, for data collection have been trialled.

The Cygnus feasibility study gathered ‘real world’ information from over 170 people with memory problems across four northern England regions, including Greater Manchester.

The project was managed by the University of Manchester in collaboration with the Northern Health Science Alliance and technology partner IXICO.

In Greater Manchester, participants with suspected Mild Cognitive Impairment (MCI) and mild dementia were referred to the study after attending a Greater Manchester Mental Health NHS Foundation Trust Memory Assessment Service.

In other cases, participants were invited to participate by the local research team after signing up to Join Dementia Research, a National Institute for Health Research (NIHR) initiative.

The Greater Manchester Clinical Research Network delivery team supported local recruitment and delivery of the study. Angela Aldridge, Clinical Research Operations Manager, who led the delivery team, said: “It was an honour to support this northern collaborative research project. The north of England is an outstanding place to conduct pioneering dementia research.”

Cygnus study stakeholders convened at the end-of-study meeting at the University of Manchester


Close friends or family members involved in looking after the cognitively impaired participants were also asked to participate as ‘study partners’. Their involvement has allowed researchers to measure the impact that looking after a partner, friend or family member with memory problems can have on a carer’s quality of life.

The study gathered data in two ways:

  • Patient and carer reported outcomes – questionnaires which asked participants about things such as sleep, physical activity, frequency of social contact, and depression and anxiety.
  • Wearable devices – two devices recorded details such as a participant’s number of steps, distance travelled, and time spent awake.

One of the wearable devices looked like a regular watch, while the other was a simple wrist band.

The watch device required some user involvement in sending their data to the investigators via a wireless connection. The wrist band was returned to the clinic for download at the end of data collection and did not provide direct feedback to the user.

Participants preferred the watch-like device because of how it looked and the feedback it gave. They reported that wearing the watch made them more aware of their activity levels and prompted them to try and become more active, which has benefits for the overall health of someone living with dementia.

However, from a study point of view, data was lost due to problems with the wireless connection. The data from the watch was of lower quality overall, meaning that less detailed analyses could be performed.

Overall, participants reported they had a positive experience and enjoyed having the opportunity to talk to the research teams, even though some of the visits were long in duration.

Eighty per cent of participants stayed on the study until the end. Those who left did so mainly because of poor health and illness, while others moved into care homes.

Professor Iracema Leroi was the Principal Investigator at the Greater Manchester Mental Health NHS Foundation Trust site. The three other sites were also located in the North of England; Tees, Esk and Wear Valleys NHS Foundation Trust, Mersey Care NHS Foundation Trust, and Northumberland, Tyne and Wear NHS Foundation Trust.

Professor Leroi, from the University of Manchester, said: “Working on the Cygnus project has provided a fantastic opportunity to bring together the innovations of IXICO with the leadership of the Northern Health Science Alliance. Cygnus was an excellent example of how pragmatic 'real world' research can be undertaken across Trusts in the NHS.”

Dr Hakim Yadi, Chief Executive Officer of the Northern Health Science Alliance, said: “The potential of wearables is much talked about but we are only at the beginning of seeing what their potential is in real-life situations.

“The Cygnus study demonstrated that there is great potential to use them to help in both research and patient care. It also however highlighted issues with them which need to be addressed.

“This kind of study is exactly what is needed to develop the robustness of wearable use in clinical research.”

Cindy Chan, Clinical Studies Officer responsible for the study GMMH, said: “The ‘real life’ data collection would not have been made possible without the support from the participants and study team across the four northern sites.

“I would like to thank them all for allowing me to be part of their journey for a year. Their dedication and contribution to research has brought us closer to improving services and quality of life for individuals caring for and living with cognitive impairment.”

A summary of the study findings is available to view here.

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    New ways in which researchers can use digital technologies, including wearable devices, for data collection have been trialled.
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