Introducing Macmillan My Data Store

Macmillan My Data Store is a pilot project to develop, test, and implement a Personal Data Store and connecting web apps for people affected by cancer and the frontline workers who help them along their journeys. It will make sure that when data needs to be shared, this can be done securely, safely and easily. It is being built by Mydex Community Interest Company in partnership with Macmillan Cancer Support and two councils: Glasgow City and West Dunbartonshire.

Improving Cancer Journeys

Glasgow City and West Dunbartonshire run Improving Cancer Journey services in partnership with Macmillan. They help people affected by cancer to get the emotional, financial, medical, spiritual or practical support they need. Helping people with so many different parts of their lives means communicating with many organisations, which means a lot of information being passed around. This is not always as safe or practical as it could be, and it can often be stressful and repetitive both for people in need of support and the link workers who provide that support.

People living with cancer communicate and share data with a number of organisations. Here is a typical picture of this for somebody in Glasgow:

For some people, especially those with complex needs, the number of arrows and circles — and the pressure that puts on them — can be much larger.

Since the beginning, Mydex CIC have worked across health and social care in Scotland, because people having control over their data can be particularly life-changing in these settings. For example, we worked on the Backpack project with the Digital Health and Care Innovation Centre. Backpack explored how people living with multiple sclerosis would like to manage their personal information in a Personal Data Store, or ‘backpack’, to improve their experience accessing services and to support health and care professionals to deliver more integrated and person-centred care.

Like the chart above, Macmillan My Data Store can be traced back to the people who work at the service: they realised that to really improve people’s cancer journeys, they had to find a better way to share data. One that made data flow easily by giving it to the people the data is about. To see how this could happen, we were invited to run a scoping project: exploring how putting people affected by cancer at the centre with their data could help the organisations around them deliver truly joined-up care and support.

Discovering demand

The scoping project involved running workshops, and talking to people affected by cancer and those who support them at Glasgow’s Improving Cancer Journey service and elsewhere. We wanted to see what people thought when we introduced them to a person-centered approach to their data.

The project found that people affected by cancer and those on the frontline were excited by what they saw. It was clear that a person-centred approach would ease administrative burdens and give those affected by cancer and those who support them their time back.

“It would be a great service. All the information at the moment is very disjointed … one concise data store is a brilliant idea.” Person affected by cancer

There is a lot of information scattered everywhere. As part of the scoping project, we had to figure out what types of data were needed by the Improving Cancer Journey service for collection, storage and sharing. These are called ‘attributes’. They cover a broad cross-section of people’s affairs: from health and care to finances, personal preferences, needs, journals and thoughts.

Every one of these needs to be made, managed, stored and shared. Either by people affected by cancer or those supporting them. Doing this in a disjointed way causes frustrations many of us will be familiar with:

“If you can stop me having to fill out so many forms to get people help then I can’t wait for this project. That’s the worst part of my job: filling out forms.” Link Worker

Helping people to manage and share data was the original motivation for the project, but the scoping project discovered much more friction, effort, risk and cost that can be reduced or eliminated by a person-centered approach.

We found that people were comfortable with new software too. We found that most people used tablets and phones regularly and for those who do not, they will be able to put a trusted person in control.

This means there is no reason to hesitate.

Starting the pilot

Following the scoping project, we presented a report to Macmillan and the boards of Glasgow and West Dunbartonshire’s Improving Cancer Journey services. We recommended this pilot project and received the go ahead and a grant from Macmillan to support the pilot in Glasgow and West Dunbartonshire.

At the moment, the journey looks like this:

Following this pilot, it will look like this:

Coming Soon

This blog series will dive into the ways this pilot is enabling and empowering people affected by cancer and those who support them. We will cover how the cancer journey will change for the better, and how Mydex CIC and the teams of service providers are collaborating to make this happen. We will also go into what, exactly, a Personal Data Store is, how it will reduce friction, effort, risk and cost, and how people react to using Macmillan My Data Store. We will also talk about doing all of this during the pandemic, which has only further proved the need for seamless information sharing and empowering people with their data.

Working together

The project is a collaboration between:

• Macmillan Cancer Support, who run, sponsor and fund Improving Cancer Journey services and provide specific services for them too.
• Mydex Community Interest Company. Our mission is to empower people to manage their lives more effectively through convenient, trustworthy access and control of their personal data.
• Glasgow City Council, whose Improving Cancer Journey service was the first one to be established UK-wide. They bring years of experience enabling people affected by cancer.
• West Dunbartonshire Council, whose Improving Cancer Journey service is relatively new. It will be interesting to see how many people begin using a digitally enhanced service in comparison to Glasgow’s experience before the change.

And last but certainly not least,

People, who will be at the centre of the process.

• People affected by cancer, which includes people with cancer alongside their friends and family.
• Link workers from both councils, who provide support.
• Local service providers, such as those who work on the front line from the third sector, NHS and other public services providing local services to people affected by cancer.