Attending a customer’s programme board for the first time can be nerve-wracking. In June 2015, we had just signed North West London (NWL), who aimed to release medical records to an astounding 2.4 million people.
There I was, sitting at an enormous table with 30 other individuals, including my colleagues from Patients Know Best. This contract was five times larger than any other we had embarked upon and impacted over 20 times the number of patients. Initially, I was calm. The chair of the meeting was a heart specialist named Jameel. In Arabic, Jameel means beautiful, and it suited him perfectly. I was captivated by his presence.
However, as he called on each name for each agenda item, my peace turned to panic. NHS staff answered concisely and completely. My turn was approaching, and Katie Bettell-Higgins Lyndon Johnson and Ruth Whichelow were messaging me frantically (on Skype!). Jameel would call on me as CEO, and I thought I had to answer every question. (Pro tip: I actually didn’t.) “When would the test results feed go live?” (It would eventually be March 2016.) “Can your servers cope with the load?” (They did, but for two days service was slow for our users as we raced to buy more bandwidth.) “Have you set up privacy labels yet?” (It took a few more months to satisfy NWL, but today it’s one of the reasons governments trust us with data from across all care settings.) The questions kept coming. And then they stopped. Jameel moved on to others, and the meeting concluded.
It’s no accident that this was the first health economy in the world to give patients their data. They ran that meeting exceptionally well. They combined experts and egos from some of Europe’s largest providers. Despite the Lansley reforms fragmenting the NHS into fragmented payers and providers, NWL reassembled relationships, coordinating and cooperating. When Imperial Health Charity’s research showed patients wanted their data, NWL figured out how to lead and deliver.
This week, Imperial College Healthcare NHS Trust registered its 500,000th patient. They have registered more people than any other hospital has for any other portal in the UK.
So often it comes down to the drive and persistence of individuals. Dr Sanjay Gautama wanted patients to receive their results real-time. To get there, Sanjay had to bring 30 pathologists onboard: – What about cancer biopsies? (“There would be a delay.”) – What if patients got anxious? (“They are more anxious without.”) – What if patients can’t understand? (“This is the only way they can understand.”) – Do patients really want this? (“Duh, but also, Imperial Health Charity’s extensive research shows they do.”) After listening thoughtfully and collegially, Sanjay made a decision: it was time to make a decision. “Thank you for all your feedback; there are risks; we are mitigating them; we will go live March 2016.”
Today, Imperial College Healthcare NHS Trust has released over 270 million test results. For Patient Fran Husson, who has been receiving her blood tests since the start, the ability to track results over time on PKB is ‘priceless’.
The growth graph is not smooth; it hides how long and low the early days were. We—NWL and PKB—kept trying different things, but our collective efforts pay off when you hear the value it brings patients like Fran.
Eight years on, we are still innovating, Imperial remains ambitious and it is a privilege to partner with them.