I recently reached my three year anniversary working at Patients Know Best. Coincidently, this year also marks a decade since we started releasing data on behalf of Chelsea & Westminster Hospital NHS Foundation Trust.
My role in communications is helping explain what we do: the benefits of giving patients access to, and the ability to share, their health data.
For a long time this was something I understood professionally. In June 2025 it became personal.
From 10,000 steps to a hospital bed
My aunt, then aged 93, fell and broke her hip. She was admitted to Chelsea and Westminster. I am her next of kin in the UK; her son, my cousin, is a GP living in Australia. He is someone I would describe as a bit of a technophobe (or used to be).
What followed was the start of a long and difficult journey. Until then, my aunt had been fiercely independent walking 10,000 steps a day, going to the theatre, living life fully. With one small trip at a friend’s lunch, that all changed overnight.
Weeks in hospital followed, then rehabilitation and a return home. Social care support was insufficient. Just four days later, she suffered another fall and another broken hip. This time, the surgery carried a 50/50 chance of survival and an equally uncertain chance of her ever walking again.
When professional became personal
In the middle of all of this, PKB stopped being theoretical for me.
Chelsea and Westminster had been releasing data to her PKB account on our platform for years. That meant my aunt’s clinical information – every blood test, appointment, discharge or clinical update letter, and medication – was all there in one place.
Suddenly, a capability I had barely thought about personally before became invaluable. My aunt had given her permission to share her record with both her son and myself.
So when my aunt was admitted to A&E for the second time, I did not find out through the hospital. My cousin, on the Sunshine Coast in Australia, received a notification from her record about the admission. He called me immediately. I was by her side within the hour. Instead of being alone in A&E, she had family there. That mattered.
Information is a form of care
Over the months that followed, having access to her record made a real difference.
When paramedics were called to her home, I could show them her medications instantly. I could pull up her blood results. I could explain her medical history clearly and confidently. There were moments where that information helped professionals make decisions, sometimes avoiding another hospital admission.
When applying for financial and social care support, every detail we needed was readily available. We had the admissions, timelines, clinical history, and medications. It reduced stress. It saved time. It brought clarity when things felt anything but clear.
Back in the dark
Ultimately, my aunt moved into a nursing home in a different region. The care she receives is excellent, but the digital experience is very different. That continuous, joined up view of her record is no longer there.
My cousin, thousands of miles away, has gone from receiving real time updates to feeling largely in the dark. He relies on me. I rely on one off phone messages, paper letters and updates from the home. Information has become fragmented again, transactional rather than connected. It is a stark reminder of what is possible and what is still missing.
The invisible army of next of kin
There is a growing number of frail, elderly people in this country being supported by a combination of healthcare professionals and family members, often at a distance.
One hospital doctor described being constantly interrupted by worried relatives asking for updates. It is entirely understandable. They want to help, to stay informed, to feel in control of a situation that is often frightening and confusing.
We were no different. We asked questions too. I am very aware that the volume of those questions, and the pressure on staff, would have been far greater if we had not had access to my aunt’s record.
My one piece of advice? Do not wait
I work for PKB, so I do not pretend to come to this without bias, but I also now come to it with lived experience. There is a simple feature that allows patients to share their records with whoever they choose.
Before this past year, I understood its purpose. Now, I understand its value.
For those of us caring for elderly relatives, often from a distance and while balancing work and our own families, my advice is to ask them to use that button and share with you before they are sick or incapable. You never know when you might need it.
P.S. After reviewing this for accuracy, my aunt (now 94) reiterated that while her presence of mind is fully intact, she has zero desire to check her own record. She would much rather read a good book. She is, however, a fierce advocate for her current region to release its data so her support network can advocate on her behalf. I know better than to argue with her.