Last week, I added my perspective to an article in the BMJ supporting patient access to their medical records. Unsurprisingly, I am a strong proponent of a patient-owned approach. It’s key to restructuring healthcare delivery. Empowered with the information and tools to not just access but contribute to and use their record, patients become active partners in their care. And as patients are the de facto integrator across today’s fragmented system, they need to own a record that is complete, accurate and real-time. This benefits patients, increases efficiency for healthcare organisations, and is essential for creating a sustainable healthcare model.
Clinical Resistance
Some clinicians are against this. While many support this shift, too many remain opposed to releasing data – especially real-time. Often they state that patients might not understand or be concerned by their results, so fear spending more time and effort. It is true that patients may not grasp all the information initially, with education and time, they can and do learn. Not everyone can do everything, but many can do much – especially those with chronic conditions. Investment in building understanding today will pay dividends tomorrow. Society needs patients who know what their health means and what to do about it.
Addressing The Root Problem
The real issue lies in a medical education system which has failed to prepare clinicians for patient-centric care and sticks to the outdated patriarchal model. Today, 70% of NHS spending goes towards chronic diseases. What these patients do matters more than what their doctors do. Over time, patients get multiple conditions and specialists; no single clinician can know everything anymore. Patients increasingly access information about their conditions online anyway. We must build on patients’ abilities by training professionals how to work with patients – to recognise their experience and build up their self-management.
Today’s Patients Training Tomorrow’s Doctors
As a social enterprise, we exist for systemic societal change. For us this means equipping people with the knowledge to understand and manage their own health situation. We do this by selling our platform software, but the product is half the story. We recognise true change depends on clinician buy-in and recalibrating their relationship with patients.
This is why we established our pro bono Education Programme—to ensure the next generation of doctors learn to work with patients from the outset.
In 12 universities, today’s patients are training tomorrow’s doctors (and nurses, midwives, physiotherapists, dieticians and pharmacists). The University of Leicester Medical School pioneered this initiative in 2014 with volunteer patients consulting online with medical students. Professors tracked and mentored through PKB. By 2015, first-year students encountered patients using PKB for the second year running. They were more experienced and knowledgeable than the medical students—challenging traditional educational hierarchies. Pharmacy students later joined in with answers about medications, often outperforming and teaching medical students. In this collaborative environment, students learned from patients and colleagues alike—a glimpse into the future of healthcare.
How are we doing?
Marking our 10th anniversary, we returned to Leicester to interview Professor Ronald Hsu and one of his first students, Dr. Ethan Maitlyn, now a practising hospital doctor. You can listen to their insights on the programme here:
Professor Hsu has been a trailblazer for a new set of values and it’s heartwarming to see graduates like Ethan espouse them:
“Now as a hospital doctor, I have to really understand is this going to be palatable, this suggestion to my patient? And what do I need to say now to them to help them understand? And this is going back to that first year medical student experience, understanding that patients are people with lived experiences of illness rather than just someone that you do things to, say things to fix.”
So far, around 5,000 medical students have participated in programmes using PKB, but it’s the tip of the iceberg. Healthcare needs more Ethans. As a certified B Corp, we are committed for the long haul—doing the right thing in the right way. If you want to equip your students with the skills needed for tomorrow’s healthcare landscape, please contact us as you prepare for the new academic year.
I don’t think clinicians worry about patients not understanding anything. I think it is more a case of clinicians losing control over their patients. They don’t want patients to have control, as it affects the power they have over patients.
As a patient, I control this power by refusing to share. I prevent sharing by refusing to give any demographic information to clinicians in order to prevent sharing.
I had my covid jabs anonymously.
The key to unlocking sharing is consent. This is something the NHS as a whole refuses to admit.