Co-Designing a digital solution using PROMs for People with Dementia
Research type
Research Study
Full title
Intervention to Support Community based Reporting and Integration of Patient-reported outcome measures through the use of Technology (iSCRIPT) for dementia
IRAS ID
273039
Contact name
David Kernaghan
Contact email
Sponsor organisation
University of Strathclyde (Capita)
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
The purpose of this study is to develop a novel application for consumer smart devices that is capable of digitally collecting Patient Reported Outcome Measures (PROMs) from People with Dementia (PwD) and deliver useful data to Health Care professionals (HCP) and Informal Carers (IC) to assist with care delivery.
Due to the progressive nature of dementia, several complications can arise overtime. PwD may lose the ability to manage their daily routines and activities which may lead to issues such as trouble taking medication routinely or being unable to seek timely help for health issues that may arise. Hospital admission for PwD is not only stressful for people with dementia and their families, but is recognised as having significantly higher mortality rate (24%) when compared to the standard population (12.2%) (Sampson et al 2009). At a healthcare system level this is also extremely problematic as the costs of dementia are substantial. In the UK alone, approximately 850,000 people currently live with dementia as of 2015 at an estimated cost of £26.3 billion a year for health and social care costs (Alzheimer’s Society 2014). This is especially problematic as an ageing global population means the number of PwD is rising significantly with the World Health Organisation predicting 4.6 million new cases of dementia each year with the number of PwD doubling every 20 years to reach an estimated 81.1 million by 2040 (WHO 2012). With this in mind, the concept of developing a novel application that is capable of monitoring PwD by collecting PROMs which can then be used to insight future care decisions and flag possible concerns early could prove to be an incredible innovation for dementia care.
The study itself will seek to co-design such an app directly with PwD, IC and HCP through multiple Focus Group/Workshops where participants will be invited to contribute to the look, design and functionality of the app as well as the type of questions that will be asked, the frequency they will be collected and the method of interaction. Participants will be tasked with answering a selection of questions using a variety of different methods (via text, Via Voice, Via images and via combinations of the previous) with their responses recorded for analysis. During the first Focus Group, these questions will be presented manually to participants to answer (pen and paper, speaking with a person, selecting pictures from a set). Feedback from this will then be used to develop a digitized version (touch screen, recorded audio questions) that will be used to repeat the study with the same group. Feedback from this will then be used to develop a functional application and the task repeated in order to refine it. Participants will also be asked their view on various consumer smart devices such as the Amazon Echo/Show and Google Home Hub. Data collected during the workshops will also be used to determine whether an automated alert system can be developed to analyse incoming PROM data and flag to relevant people any responses that may be cause for concern.
This method of Co-design has already been successfully used with this demographic before with the ‘Disrupting Dementia tartan’ project (Rodgers 2018) which sought the assistance of over 130 PwD from across Scotland in order to design a new charity tartan for Alzheimer’s Scotland. This project involved over 20 workshops arranged at 17 different Alzheimer Scotland locations all over the country and involved PwD in all iterations of the design process from the initial planning to final product that was then made available for sale. My project will be significantly smaller than this though will follow the same concepts of iterative co-design in order to develop our app from initial concept to finished product.
Sampson, E., Blanchard, M., Jones, L., Tookman, A., & King, M. (2009). Dementia in the acute hospital: Prospective cohort study of prevalence and mortality. British Journal of Psychiatry, 195(1), 61-66. doi:10.1192/bjp.bp.108.055335 https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/dementia-in-the-acute-hospital-prospective-cohort-study-of-prevalence-and-mortality/F13ABFD59453D751E1ECC13B1C610067/core-reader
WHO (World Health Organization). 2012. Dementia: A Public Health Priority. Accessed 08/11/2019. https://apps.who.int/iris/bitstream/handle/10665/75263/9789241564458_eng.pdf;jsessionid=284DBBC93914E6EAC4FE994901D68209?sequence=1
Alzheimer Society. 2014. Dementia 2014: Opportunity for change. London. Accessed 08/11/2019. https://s3.amazonaws.com/14078_Alzheimers_Interactive_Infographic/pdf/as_downloadable_infographics.pdf
Paul A. Rodgers (2018) Co-designing with people living with dementia, CoDesign, 14:3, 188-202, DOI: 10.1080/15710882.2017.1282527REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
20/WM/0149
Date of REC Opinion
18 Jun 2020
REC opinion
Further Information Favourable Opinion