People with cancer’s experience with Macmillan My Data Store
Over the past couple of months, our Delivery Lead, Liza Herzog-Reid, has been busy (virtually) meeting people with cancer to get insight into their experiences, find out what they think of the work we’re doing on this pilot, and get their feedback on the app.
Liza’s been speaking to a diverse group of people: people at the beginning of their journeys and those who have been living with cancer for a while, people undergoing treatment and people receiving palliative care, as well as those who aren’t too confident with tech and their more confident peers. We received a real depth of feedback from group discussions and one-to-one conversations too.
As we wrote in the introduction to this blog, we’re giving people who use the ICJ Service a Personal Data Store (PDS), putting them at the centre of their journeys. This app is what they use to connect to their PDS, and a big part of these conversations have been focused on testing its usability.
What’s a ‘web app’?
Most people think of an app as something you download onto a device. Web apps work a little differently:
I write this blog using two web apps: Google Docs and Medium’s editor.
The main benefit of them is that they’re very flexible: I can login to them on any device: my phone, a laptop, or a tablet. I don’t have to download anything and I get a consistent, easy-to-use experience.
Data are stored in the individual’s PDS, not on their devices. For people with cancer, it gives them a single, personalisable place where a piece of data is only entered once, and used many times without any extra friction, effort, risk, and cost. When people who support those with cancer enter data about somebody, it’s sent to the PDS of the person the data are about. This way, the individual begins to build a rich record of their journey and can use their app to give permission for anyone to use their data, without having to send it themselves. From the individual’s perspective, the process is automatic.
This is especially useful for one of Macmillan’s Improving the Cancer Journey Service’s main innovations: the use of Holistic Needs Assessments (HNAs). HNAs give a cohesive view of people’s needs beyond just their health, and are a key part of the Service. Having their data placed into their PDS for them automatically will unlock a lot of potential to streamline people’s experience with the Service. The HNA is used to refer or signpost people to different services they may benefit from and, at the moment, this leads to a fragmented experience: more friction, effort, risk, and cost than is necessary. In the Macmillan My Data Store app, it’s easier for people to take control and drive their own journeys.
Through the app, they then get a consistent experience where everything they need is in one place. It has various features to help individuals manage their journeys, such as:
- secure messaging with those supporting them,
- a timeline and alerts,
- a calendar and reminders,
- a way of seeing where they’re up to with support they’ve been referred to,
- the Circles of Support feature.
Circles of Support
One feature that people who participated in our scoping study suggested was to have a way of defining who gets updated about their cancer journey and what they are updated about.
People using the app can create these circles of support and customise who gets updates about what and when.
They make sure everybody is up-to-date, without people having to repeat themselves.
The app is designed to be intuitive and to meet the best standards of accessibility. People described it as ‘straightforward’ and ‘very clear’.
The app is designed to be intuitive and to meet the best standards accessibility. People described it as ‘straightforward’ and ‘very clear’.
“The app flows quite well, sometimes apps don’t but this one really does and it was so easy to find my way around.”
~ Participant
And we were delighted to be told we’re on the right path to achieving the mission of this pilot: to support and empower people with cancer.
“The app is about empowerment and giving people control about what they need and want to share. It’s going to be so good! This is the future. There’s nothing more empowering than having choices and the app will provide people with info to make informed decisions in a situation that feels like all of the choices have been eliminated.”
~ Participant
We also explored what participants felt would be useful to them after spending some time with the app. We’ve got a lot of suggestions to think about: from being able to edit their HNA from within Macmillan My Data Store, to colour-coding the calendar, to a jargon translator to convert clinical language into plain English.
The clearest, most common theme found within the suggestions was that participants immediately recognised the benefits of having everything in one place and wanted to expand the information they could access through the app. It’s clear that for somebody on the journey, the sheer volume of information with which they can often feel bombarded can actually become empowering if it’s managed in a way that’s centred on them.
