Understanding Patient Data: Producing Insights
We’ve been working with the Understanding Patient Data team, to find touchpoints in people’s healthcare journeys to develop their understanding about how data is used.
Last week Bev wrote some weeknotes documenting their experiences during the immersive stage of this Understanding patient Data project.
As we reached the unify section in the project we spent 3 weeks listening to tapes and drawing insights from our work.
Our Goal
For this stage of the project we are looking to identify touch points in a healthcare journey where patients would be open to further exploring their healthcare data. We started by grouping our findings under a small range of themes. This is so we can prototype new ways of communicating with the public about patient data.
In this work we also started visualising how these touchpoints might look in a journey map (see below for a draft). We’re aware that the flow of information is a bit more circular than this shows — this is just a simplified illustration.
Patient data isn’t just a healthcare record
When we were doing this work, we also began to identify different formats patient data might take. Patient data isn’t just your healthcare record, it’s also your clinical letters, it’s the anecdote you share with a friend and it’s information from your wearables nudging you to take more steps. We’ve also been looking at how information is exchanged at many stages of the journey, between different stakeholders in the system — not just between the patient, doctor and NHS.
Sharing some insights
We’ve got a lot of rich and valuable insights from this research. There’s too much to summarise here, so I’ll just highlight three:
1. Patients are requesting to see data more often
As patients are gradually being able to see more information from their health record, patients are now requesting to see their data more often. This is a good sign, but many patients do not understand the process for accessing them.
“I think they know a bit more now — things are more publicised. You often hear people saying I want access to my records, I want to see my notes. (People can see their notes and have every right to see their notes). We tell them how to access their notes but people are still under the assumption that if they demand them, someone will go and photocopy them and give them straight away. It’s that mindset that causes so many arguments in the department. If it was as easy as that we would do it but we need to follow procedure.” (Healthcare Professionals)
2. Patients value information over instruction
People are looking for insight to improve their lives while living with their condition. This includes Googling information and looking at NHS websites and webpages from other condition specific organisations.
“Well instruction is…you know do that, take your inhaler, lose weight, do this, do that. Whereas information is about giving you some insight into what you’re going through. How asthma works in the body.” (Public participant)
“I look online…as a source of keeping in touch with the latest developments. If it’s something around chronic fatigue, I’ll put in CF and see what comes -use keywords to find what I’m looking for”. (Public participant)
We found that both our public participants and the healthcare professionals had the ability to judge well which sources they trusted online.
“In my opinion some people make pages for their own means or gains, so with putting information out there, set groups are open to do various things. But …who’s benefiting is what I would say there!” (Public participant)
3. Data is not always accurate
Patient data is not always accurate and that can significantly impact how care was delivered.
“Then years later you’ll find out it was a mistake. The other coordinator before me had written down something wrong about a patient. It was a revelation that we got something wrong. This went on for about 7 years.” (Healthcare Professional)
Next Steps
We have our insights prepared to deliver our mid-project check-in and we will be progressing the project forward. We’ll be using the insights to ideate and conceptualise new approaches to addressing the challenge question.
We’ll catch up soon!
AK
