A tribute to Fran Husson, a highly valued patient advocate who recently passed away, seen here discussing PKB and health record access with our CEO, Mohammad.

This month we were very sad to learn of the passing of one of our long-term patient advocates, Fran Husson. We at PKB are grateful and so very glad to have known Fran, and feel privileged to have been closely involved with someone who was the definition of ‘a force of nature’. Fran was not only an extraordinary patient advocate and a guiding light for us over the past decade, but also a friend with a wonderfully wry sense of humour, who will forever be considered part of the PKB family.

Fran lived with several significant and often uncomfortable medical conditions – including Acute Myeloid Leukaemia, respiratory failure, severe arthritis, and hearing loss. Yet, rather than letting these challenges hold her back, she used these very experiences to advocate passionately for patients, like herself, to have access to their health data and for their voices to be deeply integrated into healthcare.

She would always remind us why we do what we do. As our deeply valued critical friend, she consistently offered robust, honest opinions, challenging us with new thoughts and urging us to do more for the patients we serve. Her constructive input, aimed at strengthening our platform and purpose, proved invaluable.

Fran’s enduring wish, we are certain, would be for us to see our shared mission through to completion, ensuring her passionate and insightful voice remains heard. We are committed to doing that and keeping her spirit alive in all we do.

How did we meet Fran?

“I first heard about Fran from John, the head of information systems at our largest customer”, said Mohammad, our CEO. “I found John formidable, and listening to him, he found her formidable. So I went off to make friends with Fran. I was surprised to meet a short, elderly, frail lady. Then she smiled and started talking.

Apparently, Fran had heard about PKB in the hospital during its pilot rollout and was determined to register. Somehow she had found out where his office was and turned up one day asking to register. She was determined.

The thing is, John was clearly fond of Fran, as everyone becomes. She was extremely polite in her push, right in her requests, and mischievous in her smile. She joined the hospital’s programme board for PKB – along with her volunteer service for other hospitals across London – and always made time for this work despite the physical toll of her illnesses. The times I saw her in board meetings, she was always asking that patients received the right care, but also that NHS staff had the right support. To be honest she just cared for everyone.“

Inspiring campaigner and educator

Fran sat on a number of patient participation groups, offering perspective and input on what patients really needed and what made their journey harder. She regularly engaged in webinars and wider industry collaborations to explore what patients can do for themselves and the system to lead to better health outcomes and what is required to support this enablement. 

This extended into research as Fran was a Research Officer at Imperial College London, regularly contributing to papers including:

• The role of patients and carers in diffusing a health‐care innovation: A case study of “My Medication Passport”
• How can patient held information about medication improve patient safety?
• Patients need access to comprehensible information and their summary care records
• Co-designing a digital self-management plan for bronchiectasis
• Patient perspectives on ‘MY medication passport’‘ 

In addition, Fran Husson was a Public Partner at the NIHR Health Protection Research Unit in Healthcare Associated Infection and Antimicrobial Resistance. She was a winner of the prestigious President’s award in the category ‘Inspirational Partner Award for Societal Engagement’ awarded to individuals or teams outside Imperial who have made outstanding contributions that inspire and support Imperial in the achievement of one or more of their societal engagement aims. 

These words “inspire and support” summarise Fran so wonderfully. All those who worked with her saw her dedication to everything she did and her contributions were always considered, impactful and helpful. 

A tireless partner in change

For us at PKB, she not only talked about her personal experience and how she thought patient access to and ownership of information could help change the system but she considered this from the perspectives of all who needed to understand and instigate change. She thought of the professionals, the patients, their families and talked about the joined responsibility but also the joint opportunity – https://www.youtube.com/shorts/_16c-VwECXA. For those that were worried about the barriers of digital, of age, of acceptance she helped everyone go on a journey to understand the art of the possible but also what was really required to harness the value available. In the early days where our mission was thought of as radical, a patient voice explaining why this mattered could not have been more impactful. 

Our business team remembers her tenacity and relentless energy:

“There was no one that Fran would not speak to! At all levels of the system, Fran was championing the patient voice and patient need. She would regularly bring articles to us, suggesting other advocates that we (or she) could reach out to. More often than not Fran already had reached out, and normally came to us to tell us how excited she was about finding someone else who believed in our collective mission. 

On the flip side, when we were engaged with individuals or organisations who were nervous or had apprehensions about going on a digital journey with their patients, Fran never once hesitated in offering to, or agreeing upon our request to speak with them – and she always put their mind at ease. The time and energy she gave to people was incredible, right until the very end.   

Whether it was meeting her for a virtual brew and a natter, or having her join us on stage, she was one of our team and we will miss her tremendously.”

Sharing her perspective at a PKB User Group (PUG) in 2021

However she also kept us honest, telling us where our platform was not easy or intuitive, thinking about what we could change to support patients, whilst always recognising the competing priorities the business has, and understanding our need for time and wider input. As noted in a reflection from our product team, she guided us through and prompted many changes that have led the system to where it is today: 

“We were incredibly fortunate to know and collaborate with someone who was not only a tireless advocate for our product but a true champion for all patients. I first met her when she generously offered to take part in a patient user testing session for the NHS App integration. From that very first encounter, her warmth, insight, and unwavering belief in patient empowerment left a lasting impression. She was deeply committed to ensuring that patients, especially those with disabilities, had their voices heard. She regularly gave thoughtful, constructive feedback and took part in our patient groups and prototype testing sessions, often going above and beyond to help us refine and improve what we were building.

Her input had a profound impact on our work. Because of her, we were able to make product improvements that will go on to help millions of patients. Her feedback didn’t just guide us — it inspired us. Her passion for patient access and autonomy was infectious, and she moved so many of us within the company to push harder, think more compassionately, and design more inclusively. On a personal note, she was one of the kindest, most considerate and hardworking people I’ve had the pleasure of knowing. She was the kind of person who left you better than she found you. Her tireless energy, quiet strength, and deep care will be so very missed — by our team, our product, and the wider patient community she advocated for so powerfully.”

Despite all she achieved, as one of our long-serving Success team members shared, she was always humble; truly, the thanks are all ours, Fran:

“As well as being fiercely passionate and incredibly astute she was typically humble and full of grace and kindness – I will never forget at a Patient Access Group that we ran she once said:

‘Hello, I’m Fran and I’ve been using PKB for quite a long time – 7 years – and it has saved my life,  I can’t express my love or find the words in fact to express what PKB has done for me and is doing for me every day…. what I would like to say to PKB is thank you for what you are doing for us patients – thank you.’

I would like to turn that around and say – Fran – we could not have got to where we are without your unfailing support and tireless work – thank YOU. We miss you already and hope you will rest easy in the knowledge that we will continue the mission, keep patients always at the centre in everything we do just as you advocated.”