What is a Personal Data Store?
Macmillan My Data Store has two parts: Personal Data Stores and the web applications people use to connect to them. Today’s post is about the first part — the Personal Data Store, or PDS.
It might be best to explain a PDS by starting with how things work with data at the moment:
Just now, all of our personal data is stored with the organisations that use it. The NHS stores all of our health records, often many times. Amazon has your purchase history, HMRC has all your earnings and tax records, and so on. The most common attributes, our names and addresses, are duplicated in hundreds of different places. We give our information to organisations when they need it to provide services for us and, perhaps after asking our permission, they occasionally share it between one another when we need them to. We call this the organisation-centric model for managing data.
A PDS is simple, but it represents a radical innovation in how we manage our data. Instead of personal data only being stored by organisations, it’s also stored in a virtual vault by the individual whose data it’s about. The individual has complete control over it. Individuals give permission to organisations to connect to their PDS and organisations can send or receive information to help that individual, all without the individual needing to find, send or explain anything. It’s in the cloud, which means it’s stored in secure, UK-based data centres. We call this person-centric data.
Any type of data can be entered into the PDS — it can be:
- Delivered directly by an organisation
- Moved from an organisation to the PDS by the individual
- Entered manually by the individual through a web application
The PDS is, quite literally, central to Macmillan My Data Store Pilot. It means that instead of information being scattered around everywhere, it is coming from and going to the person it is about. In other words, the individual is the point of integration for their data.
We’ll better explore how this changes people’s journeys in a future post, but here’s an example to put this in context:
Imagine, in Scotland, an individual needs to provide information to prove their entitlement to different benefits. The information comes from their doctor — from the NHS. They then have to call or log into the website of the Department for Work and Pensions, Social Security Scotland and the local council. They give the information needed by those three organisations. What this means in real life is repeating themselves: filling in the same information in three different online forms or to three different telephone advisors.
With the individual’s PDS as the point of integration, that entire process is replaced by the NHS placing the relevant records into the PDS and each of the three organisations requesting access to them, with permission.
We saw in our previous post how many different organisations people affected by cancer interact with. The difficulties this causes, and the opportunities for positive change, are the subject of our next blog post.
