The concept of ‘personal data stores’ has emerged as another way for patients and consumers to have more power over their healthcare – while saving time and duplication in the health system.
Layers of data, including less sensitive information about a person’s environment as well as clinical information, form a story that doesn’t need re-telling at every clinical interaction.
It’s in early stages of development now in Scotland with co-design principles and a community-led approach designed to build trust and confidence.
“A personal data store, in the cloud, allows you to build your story, and you keep the story and you share it with whoever is important to you,” says Janette Hughes the director of planning and performance at Scotland’s Digital Health and Care Innovation Centre.
Speaking to interviewers Dr Louise Schaper and Dr George Margelis on PULSE the Podcast’s new episode released today, Ms Hughes said personal data stores ‘put power back into the hands of you as a person to hold your own data and change that data as things change for you”.
She talks about consent, access control, interoperability and some of the barriers that could prevent personal data stores going ‘mainstream’.
Listen to the whole episode HERE.
About Janette Hughes
Janette Hughes has led various high-profile innovation projects in Scotland, including the Wellness and Health Innovation Project, and over the last five years, involvement with two major Innovate UK-backed programmes:
· Future city demonstrator (Glasgow) where she assisted in the development of a City Observatory that harnessed the power of data for City challenges.
· The Scottish DALLAS programme, which pioneered a digital wellness platform and applications in Scotland.
Janette is:
· Chair of the Digital Working Group for All Policies for a Healthy Europe
· Chair of the UKTIN Health & Care Working Group
· Scottish Government Digital Capability Advisory Group Member
· Remote & Rural Health & Care Strategic Board Member
· Scottish Lead for the UK & Ireland HIMSS Steering Group
