Meet the Innovator: Patients Know Best

Meet Mo Al-Ubaydli, CEO of Patients Know Best (PKB). PKB is a social enterprise and technology platform, designed to bring together patient data from health and social care providers and the patient’s own data, into one secure personal health record. Read what Mo has to say about building clinician trust, the role that AHSNs have played in tackling net zero and sustainability objectives and how his own personal perspective impacted the ‘lightbulb’ moment.

Tell us about your innovation – what and why?

PKB is one record that contains all the information about your health. It travels with you wherever you go and, as the patient, you own it. This is to help the people looking after you to do so more safely and so you have all the information you need. Our customers such as hospitals and Integrated Care Systems (ICSs) release the data so that it can all be collated in one place, and the patients themselves can also add information. Doctors can also access this via their medical systems as well.

What was the ‘lightbulb’ moment?

This was in 2007 when I was writing a book about giving patients access to their records. I was coming at it from my personal perspective as someone with a rare disease. Until that point, I had thought that my doctors were trusting my knowledge of the disease because I’m a doctor myself, but when I started researching this more broadly, I realised that the doctors didn’t trust me because I had gone to medical school, they trusted me because I had gone to all of the appointments – the patient becomes the expert.

Which AHSNs are you/have you been supported by?

Two have been significant for us. Yorkshire & Humber AHSN where we are part of their Propel@YH Net Zero programme. They’ve been really good at helping us tackle net zero and sustainability objectives and green accounting. Kent Surrey Sussex (KSS) AHSN worked closely with us on a project with Surrey and Sussex Hospital Trust, which calculated that if the Trust’s 4,000 patients used PKB to monitor inflammatory bowel disease, it could save £4 million per year. This figure was based on reduction in appointments, change in medication and prevention of progression to surgery. The study ended up in the NHSX digital playbooks for mental health and gastroenterology. It was also one of the case studies featured in Matt Hancock’s speech a few years ago.

What’s been your toughest obstacle to date?

It was convincing people to start. Initially people thought it was a technology problem, so America was the place to solve it, but it’s not. It’s a trust problem regarding patients and data, that’s what we had to overcome, and the UK’s NHS was the place to overcome it. The clinicians who did try it out often went against their colleagues who were worried about the risk of failure.

My tactic was to approach potential customers in a more general way, by asking if I could present my research. They would then introduce me to colleagues who may be interested in the research, then I could talk about the solution. Those clinician-to-clinician introductions were very powerful.

What are your hopes for the future?

We started off targeting the 1% of the population with rare diseases. Then additionally we were looking at supporting 20% of the population with long term conditions, but we really want 100% of the population, to help people stay well. If you could compare your GP data with your supermarket food data and your gym data, what could you learn and do to prevent disease?

We are also working internationally to help other countries deliver this to their citizens.

What’s the best part of your job?

It’s always been the people I get to work with. In the early days I often ended up with the most hard working and clever clinicians who, because they are dealing with patients with conditions that are so complex, were more likely to contemplate using PKB. I was told that younger doctors will go for this, not the older ones, but I have found that older doctors have been more receptive. I eventually realised that this is because the more you know, the more comfortable you are with other people knowing it, you don’t feel threatened by it.

Three pieces of advice for budding innovators?

1. Plan your cash flow for very long decision cycles in healthcare.
2. People don’t intuitively understand how innovation happens. The first product to be used, or the first department to go live is always really messy. It’s very difficult to find people that are willing to get involved at that stage.
3. Listen to podcasts to learn and be inspired.