Macmillan My Data Store for Friends and Family
In our last post about the pilot, we learnt about people with cancers’ experiences with a web app we are building to connect them to their personal data store (PDS) to help them better manage their cancer journey through Macmillan’s ICJ service.
There are many more people who are affected by cancer when somebody is diagnosed other than the person with cancer themselves. They’re on the journey too in various different ways, depending on their relationship with the person: they might support their family member, friend, or colleague in lots of ways. Whether that’s helping them every day, directly, with all the administration that comes with having cancer or supporting them with other aspects of their life, or just needing to be kept up-to-date.
All of these things involve people’s personal data. The administration involved is, really, data being moved around. Even just being kept up-to-date means having some information sent out by somebody with cancer or people close to them.
So, we’re building a web app for people who support people with cancer. It’s a way for them to connect with the person with cancer’s PDS. They can access whatever the person wants them to access, which creates a real sense of coherence and a real connection to the lives of those they support. They get their own PDS too, because they have a profile and preferences and may want to store other information to help them support somebody or even to support themselves.
Our Delivery Lead, Liza Herzog-Reid, has been doing the same experience testing, this time with friends and family of people with cancer who kindly took the time to help us make sure we’re on the right track and suggest anything they’d like to see in the future too. This was a mixture of remote one-to-one sessions and workshops.
Somebody would use this web app because they’ve been added as a member of somebody’s support circle. After logging on, their web app begins with a page displaying who they’re supporting.
A really important thing to emphasise about the relationship between the person with cancer’s web app and the friends and family web app is that the person with cancer defines who is in a particular support circle. By doing this, they can define what people in a particular circle can access from their PDS, or when they’ll be alerted to a change. It’s designed to take all of the friction out of having to decide who knows what and when.
Just to recap: data is stored in the individual’s PDS. When people who support those with cancer enter or view data about somebody using their own web app on their own device, it’s accessing the PDS of the person the data is about. Nothing is stored in the web app or on their devices.
By clicking or tapping somebody they’re supporting they can view information about them in different ways, such as:
- Alerts and updates about changes on the person with cancer’s timeline for example
- Access their calendar, according to whatever level of access the person with cancer is comfortable with. This way, they can see what is coming up and happening in terms of treatment, services and things like medications.
- See their journey in more detail: such as specific organisations they’re currently referred to and details about that relationship.
- Access any details about specific events or individuals they act with on their journey, such as their consultants.
Like our last batch of workshops, Liza spoke to a variety of people with a variety of caring responsibilities, experiences of being affected by cancer, and differing technical skills.
Participants across the board valued how important it is for people with cancer to be able to define different circles of support, with customised levels of access and automatic updates. For example, recognising that people’s circles of support extend to coworkers, and that being able to provide them with only the information they need would really make it easier for some people with cancer to navigate the often difficult interaction between their situation and their work commitments.
Participants also spoke insightfully and emotionally about how much the web app would help with the organisation involved in supporting somebody:
“I remember being asked by a specialist to make a life or death decision for my wife who had cancer at two in the morning. I had everything organised in binders … I come from a senior police role, so I knew how to organise information in an effective way. I don’t think everybody could do that.
Anyhow, I had to go through reams and reams of paper in the binders to get the info to make an informed decision with the specialist for my wife. I was mentally, physically, and emotionally exhausted. It was two am, after all.
If I had had this app, I imagine I could have just searched the specialist’s name and pulled up my notes of the treatments, appointments, etc. that he was asking me about quickly. It would've saved me the pressure and anxiety of thinking I might miss some piece of information or not find it quick enough. I could imagine pulling up a search function for the timeline or the calendar to see all the appointments with a specific doctor, nurse, provider to make important decisions fast.”
~ A family member of somebody with cancer
“I love both the timeline and the calendar. I can imagine using both of them a great deal as a carer. I love the visibility of the timeline and I feel like for me, I could get quick references needed in appointments for someone I was caring for during appointments out of it.”
~ Workshop participant
We were glad to receive the same sort of feedback as the last round of experience testing about the ease of navigation:
‘this app is just so easy to navigate around. Just a touch here and there and you have the info you need.’
~ Workshop participant
Also like last time, we received a lot of great suggestions for additional features to be added in the future. From mood-tracking and being able to present that emotional journey back to people in a way that empowers them and gives them deep insight into their own journeys as people affected by cancer, to gamification features like star charts, so people can feel good about doing things to take care of themselves.
Another suggestion that really chimed with our job of making personalised, joined-up services easy to provide was that carers have many services available to them too and there is an opportunity to provide similar referral functionality as we have in the web app for people with cancer to carers:
“Do you know that services are available for you as a carer, too? It’s important to bring carers into the fold of the ICJ and make sure they know they belong.”
~ A volunteer
As a specific example of this, one participant suggested people should be able to set it up so that the web app knows when they’re logging on in the middle of the night, and reminds them of the mental health support that’s out there for them. This one really made us feel we’re on the right track — to have this be a companion for people affected by cancer.
We’re really excited about the progress this pilot is making, and it’s great to see that Macmillan My Data Store, and the idea behind it, will be able to make everybody affected by cancers’ journeys easier.
