Working with the furthest first
Earlier this year we worked with Doteveryone and BuckleyWilliams to investigate how technology can improve care for older people with life-limiting conditions. The report goes into more detail about our recommendations. I wanted to talk more about what working with patients in the last phase of life was like and how that helped us develop some of those recommendations.
Why we looked at End of Life care
Back in 2015, Doteveryone founder Martha Lane Fox made a recommendation to the Secretary of State for Health that the NHS should “Focus on ‘reaching the furthest first’ to not leave anyone behind.
Lots of the digital tools we have for healthcare are designed for the mass market, but good public services should be available to everyone regardless of their age, status, background or ability. Doteveryone believe it’s important to commission and create public services for the people who need them most and that includes older people with life-limiting conditions.
We used accessibility tools to develop the prototypes (Image: Doteveryone)
Together with Cassie Robinson we spent time in hospitals, care homes and hospices, speaking to older patients and interviewing clinicians and managers. Older individuals in their last phases of life have more contact with the NHS than anyone else: they are in and out of hospital, have appointments with all sorts of consultants, physiotherapists every week. Their healthcare plans are often the most complex when they are most unwell. This highlighted the gaps in the system between different services and providers.
“Sometimes I wish I could just press a button on my phone and it would talk for me, especially when I am feeling really unwell.”
Adrian, living with heart disease
We developed a close relationship with St Christopher’s Hospice in Sydenham where we were able to continue our research and test our ideas. At times I found it pretty emotional, but I knew that spending time with the people we were designing for was critical to understanding their needs and see where those needs weren’t being met.
We spent time interviewing patients and clinicians (Image: Doteveryone)
Mapping journeys to reveal challenges
Drawing on our research with Cassie, we started creating an experience map for a patient and their clinical team. We didn’t just focus on their time as a patient but the time leading up to their diagnosis.
We developed an experience map to help us understand patient and clinician journeys (Image: Doteveryone)
This long view of a journey helped us understand the crisis points and why certain parts of the journey were more complicated and difficult. Through doing this we were able to select particular moments of complexity and think about what we could do to improve them. Ideas emerged around how patients get information, how healthcare data is shared, and what kind of tools people could use to make care easier.
With the help of BuckleyWilliams we created prototypes as design probes to help us test and explore those ideas further. Each prototype helped us understand what interventions or services might help and what barriers exist to them. In particular, we learned that some basic infrastructure, like free Wi-Fi, needs to be in place in order for people to have access to these technologies.
We created prototypes to test our ideas (Image: Doteveryone)
We heard again and again that having the right information at the right time could improve experiences for both patients and clinicians so we imagined what a collaborative health information system might look like.
Here we concentrated on separating the data and the interface. By doing that you can have different permissions, which means the right amount of information can be shared with the right people using the same underlying data. We also prototyped ways patients could have direct control over parts of their healthcare data, like their preferred place of death or how they like to be addressed. These things can be really important to patients, but aren’t necessarily part of how data is modelled right now.
Building services around user needs rather than organisational needs helps protect patients privacy and gives patients more power over their healthcare data. Sarah will write more about this soon.
Patient centred design is key
This was a hugely ambitious project to be involved in. It’s also one that made the most of our collective skillset: combining learning from making with insights from in-depth research. That allowed us to deliver recommendations that have potential for system-wide change.
We’re enormously indebted to all the professionals and patients who gave us their time. Thank you. You can read the whole report on Doteveryone’s site.