Patient engagement with their own data is vital to help them manage their own health, says Dr Mohammad Al-Ubaydli, CEO and Founder of Patients Know Best
One of the current buzz phrases in healthcare is ‘putting the patient at the centre’ of any solution, including provision of care. But this is increasingly difficult when patient data is often in many different locations and not aggregated in any way. If treatment take place in one facility discrepancies shouldn’t arise, but when it’s anywhere between a primary care facility, a private or a public hospital or clinic, and even individual therapists across several continents, it can lead to knowledge gaps and treatment delays.
In other circumstances, it can be down to different reasons. For Mohammad, he found that having a rare disease meant he often knew more about the condition than the specialist he was seeing. He realised that if there was one repository for all the requisite information, it would make for a better interaction with the consultant, helping both to manage his condition in an optimum manner.
It led him to design Patients Know Best (PKB), a social enterprise and technology platform, to help health and social care providers bring together patient data, along with the patient’s own data, to create one secure Personal Health Record (PHR) for the patient. It is the first PHR to integrate with the NHS App, making it more accessible to more people across the UK.
As a trained doctor and software designer, Mohammad has been able to leverage his medical knowledge to design a system that incorporates all patient requirements, from appointment letters and test results to multi-disciplinary care plans. It shares medical information (such the outcome of GP appointments or recent test results), so that any clinician can better understand the required care and support.
In the same way, patients can share all or parts of their record with family, carers and other healthcare professionals, anywhere in the world. It enables patients to own a copy of all their health information, to understand it and use the information to make shared decisions with healthcare professionals. In addition, it allows patients to play an active role in their health and wellbeing through specially designed tools to monitor and track their health condition.“This way care is centred around patients by default,” says Mohammad, who started his training as a GP in the NHS.
Changing attitudes and behaviours
Surprisingly, many older doctors are in favour of an integrated service such as PKB. According to Mohammad, this is because they are confident in their knowledge base and understand others have useful knowledge, like the patient. “We found it was the junior doctors who were threatened by it, but the consultants were very supportive.”
In the UK, Patients Know Best (PKB) integrates local digital transformations with the national infrastructure of the NHS App and login. Since 2013, more than 13m patient records have been shared across every county in the United Kingdom, with over a million patients using the platform. PKB is also present in the Netherlands and the Republic of Ireland and has data centres n the UK and the EU. They also have a pro-bono deployment in South Africa’s top cancer hospital which went live last year.
Currently the company is aiming to set up data centres in each of the Gulf states, working directly with the government to implement the system throughout the healthcare structure. “For a government trying to change attitudes in healthcare, using a system like PKB that encourages patients to manage their own healthcare and giving them the tools to do so is the easiest way forward. Universal health coverage or UHC will only be achieved if those who can engage with technology do so, leaving more traditional methods to those less able.”
Until now, he considers that most governments have looked at data as a compliance exercise, but now they realise that data is the key to unlocking their healthcare issues.
A hospital in the Netherlands built the country’s blood cancer app on top of PKB, and in the UK the NHS uses PKB in their back end. “Any innovation from anywhere can be deployed and that’s the model we want to give governments across the Middle East,” he says. “I see a lot of my job as liberating the data to the person who has the solution.”
Driving social change
UHC is one of the targets set by the nations of the world when they adopted the 2030 Sustainable Development Goals (SDGs) in 2015. For governments, achieving the ideal of all citizens with access to public health without financial hardship is looking more challenging as we near 2030. However, digital health is driving change across the world and the global population is far more accustomed to managing their lives via digital services than ever before.
“Families drive a patient behaviour change,” Mohammad adds. “There is usually a ‘Chief Medical Officer’ in each family, and they are the repositories of that information. So it’s important to engage with everyone so they can keep an eye on their health and give valuable information to clinicians when it’s required, rather than for example a GP appointment being a ‘data dump’”.
In his opinion, the smart phone is a great driver of change – he thinks FemTech is a good example of women leading the way to manage their own health via apps on their phones. “That’s what structurally changes the cost of care delivery and also the quality,” he says. “80 per cent of healthcare spending is determined by what the patient does. If they have appendicitis, what the surgeon does is what matters. If the patient has diabetes, what the patient does is what matters. We have to move from compliance to engagement to activation. That’s what’s going to structurally change care delivery in the 21st century.”
From this experience, Mohammad understood that patients not only have the power to change their own health destinies but they also hold the key to a more sustainable and responsive healthcare system which better meets the needs and expectations of citizens. However, to make this a reality, they need access to and accountability of their health records.
Healthcare professionals
Greater access to the most appropriate care and support services should be the norm, patients can therefore feel empowered to manage their own health. In a world where healthcare professionals not only have more time, but access to reliable patient information from all providers at the point of care; everything from lab results, care plans, discharge summaries, diagnosis information and monitoring data, with the ability to engage with patients online, early warning signs can be spotted and addressed before problems escalate. However, that world isn’t confined to the future. It’s the reality now and it’s happening across the world with Patients Know Best.