User-centred research at the heart of what we do

Smartphone technology has been found to be an effective way to deliver compensatory interventions for memory, attention and executive functioning difficulties (Jamieson et al., 2014; O’Neill and Gillespie, 2014; Wong et al., 2023). The use of smartphone technology to support cognitive impairment in neuropsychological rehabilitation is recommended in the INCOG guidelines following an extensive review of the evidence: 

‘Of the external compensatory strategies… electronic reminder systems such as smartphone technology are preferred.’ (Velikonja et al., 2023, p83)

The neumind patient-facing app development has been informed by research by our academic and clinical team members. Inspiration for the platform came from NeuroPage (Prof. Jon Evans, Dr. Jess Fish) and SenseCam(Prof. Andrew Bateman). The features and design have been informed by extensive research into features and user-interface design that improves accurate use and app uptake and long-term use (me and Prof. Jon Evans). In 2023 we were joined by Dr. Catherine Doogan who has extensive research experience and has developed several apps for people with aphasia and dementia. You can read about that collaboration here. 

Importantly, this research has placed people with lived experience at the centre, making sure their voice is heard. The neumind app has been developed with ongoing input from a large patient and public representative group; people with lived experience of brain injury, or caring for people with brain injury. The neumind platform is, and will continue to be, co-designed with the people who use it. This means the platform will be easy to use, likely to be used long-term, and tailored to work for stakeholders in rehabilitation services. 

The inspiration: NeuroPage and SenseCam

A lot of the research in prompting technology in neuropychological rehabilitation has been built from work with NeuroPage in the late 90s and early 2000s by Barbara Wilson, Jon Evans and others. This was a paging service that involved personalised prompts being pre-programmed for specific times chosen by the individual and their carers. A randomised controlled trial found that people with prospective memory difficulty remembered more of their tasks when receiving these prompts (Wilson, Evans et al., 2003). A key inspiration behind neumind was to bring this helpful tool into the 21st century by implementing it on smartphones. 

While receiving rehabilitation at the Oliver Zangwell Centre, Luke was introduced to SenseCam by Prof. Andrew Bateman. This is a wearable camera that automatically photographed events throughout the day. It has been found to support the recall of information for people with retrospective memory difficulties (Brindley, Bateman et al., 2011). Luke and Ellis found it helped with remembering what happened throughout the day and were inspired to develop an app with similar features to support retrospective memory. 

Prospective Memory aids

Prospective memory (memory for retaining and carrying out a future intention) is often impaired following a brain injury. So we knew it would be essential to include reminder setting and scheduling as a core feature in neumind. There is good research evidence that prompting technology can improve prospective memory for people with ABI (Wilson et al., 2003; Jamieson et al., 2014). 

Calendar, alarm, email, messaging and apps can all send alerts, as can personal assistants like Alexa and Siri. However, these have not been designed for use in rehabilitation. Even if you have a reminder system, people still need to be able to use it, and remember to use it. Research during my PhD at Glasgow University highlighted the difficulties those undertaking brain injury rehabilitation face to get the best out of reminding technology.

Entering the reminder accurately

It can be quite a complicated task to set a reminder with accurate details about every aspect of an event. The user interface design of neumind has been informed by research from the University of Glasgow, bringing together expertise from Human Computer Interaction and Applied Neuropsychology specialists. 

In a study with 32 people with acquired brain injury, we found that a guided reminder setting process (entering less information on a large number of screens) led to fewer errors. This was compared to the interface design commonly used by calendar apps (lots of information entered on a single screen) (Jamieson et al., 2022a). This knowledge informed the step-by-step reminder setting process in neumind, and the strategies that guide the user through setting up a plan or a routine. 

Remembering to set a reminder at all

As a study participant reflecting on her memory difficulties following a brain injury put it,

“Sometimes I forget I don’t remember, then I remember I forget.”

It is not always easy to remember to enter a reminder, or to do it while you still remember what the reminder is for! This led to research into ‘nudges’; pro-active prompt to remind people to use a reminder strategy. Nudges have been used in two studies (we called them ‘unsolicited prompts’ in these studies but changed it to nudges later as it sounds nicer!). Nudges have been found to help people with a brain injury to stay on top of what they want to do, and set more reminders (Jamieson 2017a; Jamieson 2022b). 

Receiving reminders from others

In some situations it may be necessary for family members or carers to set up reminders for individuals based on their schedules, or for important events. In a survey completed by people with acquired brain injury, the strategy of ‘asking others to remind you’ was used twice as often as mobile phone reminders (Jamieson et al., 2017b). 

The Groups architecture in neumind makes this easy. Furthermore reminders set by family members and care professionals through neumind will all be shown in one place; the schedule on the persons neumind app – so no more wading through diaries, emails and post-it notes!

Retrospective Memory

Since Ellis and Luke used SenseCam while Luke was receiving rehabilitation at the Oliver Zangwell Centre, we have understood the importance of tools to help people recap what happened to help their retrospective memory. 

Journals and trackers are retrospective memory aids that help people establish a habit of taking notes or keeping track of relevant information in their recovery (e.g. fatigue ratings and triggers), recollect what they were doing, and have learned previously, and then easily access this information again.

A key outcome of our collaboration with the WOCRS service is the need for journals and trackers. The Intensive compensatory aid training (ICAT) we observed at WOCRS places emphasis on establishing journalling and tracking as a habit and learning to use technology to review information that may otherwise be forgotten. 

Community and Connection

Involving caregivers

We know that the team of formal and informal caregivers around the individual makes a huge difference to their outcomes in rehabilitation. We also heard that informal caregivers often feel ‘out of the loop’ regarding a person’s rehabilitation goals and strategies developed in clinical rehabilitation. Survivors and family members have also told us that momentum in recovery is sometimes lost after discharge from more formal intensive rehabilitation to community rehabilitation or informal family care.

For these reasons we have built neumind to connect all members of a survivors care circle. Anyone who has a role in an individual's rehabilitation or care can be added to their group and use their own version of the app for free. This allows them to link in with the survivor, see their schedule, set reminders and suggest resources. 

Community 

Having a supportive community is incredibly important in life, and in rehabilitation. Research has shown that people are more likely to engage in healthy behaviours, and stick to challenging tasks, when encouraged by a supportive network (Reblin and Uchino, 2008). 

A pieve of qualitative research we completed at Glasgow involving stakeholders in brain injury rehabilitation highlighted the importance of social motivations for both the pursuit of meaningful activities and the use of assistive technology (Jamieson et al., 2019). 

We wanted to implement this social support and motivation in neumind, so we added the community feature. This is a forum in the app, that can be switched on or off, that allows all users (survivors, family members and professionals) to contribute to topics relevant (or irrelevant!) to brain injury rehabilitation.

Feasibility and Efficacy

Our work at the University of Glasgow initially focused on developing reminder app features that could increase the amount the app was used, and the accuracy of reminder setting. This included nudges and step by step reminder design. Jon Evans, Jessica Fish and I have worked with Ellis and Rufus since 2020 to design those features into neumind, and inform the development of other features from our perspective as neuropsychologists (Jon and Jess are!) and researchers.

We have also investigated the feasibility and efficacy of introducing a compensatory cognitive aid in neuropsychology services. We ran a feasibility trial investigating the delivery of an app with the features we had developed (we called this app ApplTree) in community rehabilitation services in Glasgow. Participants (n=21) were given the app to use on their own phone during a single session – was acceptable and feasible. A 1 hour in-person or remote session involving a 30-min video tutorial followed by support from a rehabilitation worker was sufficient for 90% of participants to learn how to use the app; 79% were still using it two months later (Jamieson et al., 2023). The results provide preliminary proof of concept that the efficacy of ApplTree compared to Google Calendar meets the MCID. Participants who used the app in the ApplTree group (n=10) had a 13% increase in memory ability compared to baseline as measured by the memory log (this measured whether they completed tasks they intended on time). There was no increase for people in the control group (Google Calendar) (n=9).  

Future Work

We are always looking to refine the platform and improve our understanding of the needs of people with an acquired brain injury or neurologivcal impairment. 

We are currently running two studies. One is investigating what factors influence long term use of an app for compensating for cognitive difficulties. This involves analysis of feedback from current neumind users about what drives use over time. This feedback will be combined with app use data to build up a clearer picture of the different profiles of use over time, how use changes over time, and what influences this. 

A second study is a survey of clinicians working in neuropsychology. We wish to understand what cognitive difficulties patients are most commonly receiving support to compensate for, and what technology tends to be used for this. We will also ask clinicians about how well that technology worked and how patients were shown how to use it. This will inform the development of the platform by guiding us in what features to prioritise and helping us work out how to best deliver neumind as an intervention in neuropsychological rehabilitation. 

References

Brindley, R., Bateman, A., & Gracey, F. (2011). Exploration of use of SenseCam to support autobiographical memory retrieval within a cognitive-behavioural therapeutic intervention following acquired brain injury. Memory, 19(7), 745-757.

Jamieson, M., Cullen, B., McGee-Lennon, M., Brewster, S., & Evans, J. J. (2014). The efficacy of cognitive prosthetic technology for people with memory impairments: A systematic review and meta-analysis. Neuropsychological rehabilitation, 24(3-4), 419-444.

Jamieson, M., Cullen, B., Lennon, M., Brewster, S., & Evans, J. (2022a). Designing ApplTree: usable scheduling software for people with cognitive impairments. Disability and Rehabilitation: Assistive Technology, 17(3), 338-348.

Jamieson, M., Cullen, B., McGee-Lennon, M., Brewster, S., & Evans, J. (2017b). Technological memory aid use by people with acquired brain injury. Neuropsychological Rehabilitation, 27(6), 919-936.

Jamieson, M., Jack, R., O’Neill, B., Cullen, B., Lennon, M., Brewster, S., & Evans, J. (2019). Technology to encourage meaningful activities following brain injury. Disability and Rehabilitation: Assistive Technology.

Jamieson, M., Lennon, M., Cullen, B., Brewster, S., & Evans, J. (2022b). Supporting people with acquired brain injury to use a reminding app; narrow-deep vs. broad-shallow user interfaces. ACM Transactions on Accessible Computing (TACCESS), 15(1), 1-23.

Jamieson, M., McClelland, H., Goudie, N., McFarlane, J., Cullen, B., Lennon, M., ... & Evans, J. (2023). AppReminders–a pilot feasibility randomized controlled trial of a memory aid app for people with acquired brain injury. Neuropsychological Rehabilitation, 1-37.

.Jamieson, M., O'Neill, B., Cullen, B., Lennon, M., Brewster, S., & Evans, J. (2017a). ForgetMeNot: active reminder entry support for adults with acquired brain injury. In Proceedings of the 2017 (May) CHI Conference on Human Factors in Computing Systems (pp. 6012-6023)

O’Neill, B., & Gillespie, A. (2014). Assistive technology for cognition. In Assistive Technology for Cognition (pp. 1-14). Psychology Press.

Reblin, M., & Uchino, B. N. (2008). Social and emotional support and its implication for health. Current opinion in psychiatry, 21(2), 201.

Velikonja, D., Ponsford, J., Janzen, S., Harnett, A., Patsakos, E., Kennedy, M., ... & Bayley, M. T. (2023). INCOG 2.0 guidelines for cognitive rehabilitation following traumatic brain injury, part V: memory. The Journal of Head Trauma Rehabilitation, 38(1), 83-102.

Wilson, B. A., Scott, H., Evans, J., & Emslie, H. (2003). Preliminary report of a NeuroPage service within a health care system. NeuroRehabilitation, 18(1), 3-8.

Wong, D., Pike, K., Stolwyk, R., Allott, K., Ponsford, J., McKay, A., ... & Mowszowski, L. (2023). Delivery of Neuropsychological Interventions for Adult and Older Adult Clinical Populations: An Australian Expert Working Group Clinical Guidance Paper. Neuropsychology Review, 1-63.