Backpack: personal data store
Research type
Research Study
Full title
Backpack: developing a concept for a personal data store with end users to enable integrated and person centred health and care.
IRAS ID
192410
Contact name
Gemma Teal
Contact email
Duration of Study in the UK
0 years, 4 months, 0 days
Research summary
This study aims to develop to develop the concept of a Personal Data Store (PDS), which enables the owner to securely manage their own digital record of personal information to facilitate more integrated and person-centred experiences of accessing public services.
In order to develop this concept, the study will focus on the experiences of people living with Multiple Sclerosis (MS) and their caregivers; this condition has been chosen due to the wide range of statutory and voluntary services that people living with MS may need to access for support. This presents a significant challenge for people living with MS and their circles of care, in terms of navigation and information sharing and as such it is proposed that this user group may benefit from a PDS.
The study will involve participants in three distinct sessions over a period of 4 months:
Mini Lab: A focus group (6-8 participants) with people who are living with MS, recruited through the MS Society support group, aiming to gain insight into current experiences of living with MS, in particular the challenges of managing personal information and accessing services.
Experience Lab 1: Half-day workshop with people living with MS (6-8 participants). Design-led activities to map key moments of data sharing and develop a paper-based prototype of the PDS, followed by a focus group to get feedback on the PDS concept and gather user requirements.
Experience Lab 2: Half-day workshop with public/third sector workers to understand how access to the PDS created by the participants in Lab 1 would change current working practices. In order to understand how this information would be used and accessed, participants will be asked to role-play possible scenarios of use, followed by a focus group to illicit feedback on the PDS and gather requirements from the perspective of service providers.REC name
West Midlands - Solihull Research Ethics Committee
REC reference
15/WM/0425
Date of REC Opinion
9 Dec 2015
REC opinion
Further Information Favourable Opinion