“Citizen participation and community voice to fight digital exclusion” speech at WHO

The WHO’s European Programme of Work invited me to present at their “Health systems of the future: harnessing technology and innovation in health, for everyone” event. My topic was “Citizen participation and community voice to fight digital exclusion”, below are the video and transcript.

In the 1960s, home kidney dialysis experiments started in London. In the 1990s a new generation of radical kidney doctors believed the patients should also have the data at home. Today, Europe’s largest disease registry is the kidney dialysis patients in the UK, whose patients get their data to self-assess and self-manage.

Kidney disease, diabetes, HIV, and increasingly cancers – these deadly diseases are now long-term conditions where what the patient does at home matters more than what the doctor does in the hospital. Not everyone can do everything, but a lot can do a lot.

Furthermore, increasingly, patients are the ones with the most, and most accurate data. Precision medicine is built on the genotype – applying it correctly requires the real-time phenotype. What is happening, right now, accurately, in the body of the patient. What should happen next given what we know about the patient’s genetics and medicine’s science. For that real-time data, patients have more data, and better data, than doctors do. We learned this when Japan asked patients to take blood pressure measurements at home. The measurements were more accurate without white-coat hypertension. And they were much more accurate as they became much more frequent. Frequency is quality. Your smartphone is with you most frequently. Its camera can already accurately detect heart rhythms, the accuracy of measuring haemoglobin and cholesterol levels through a smartphone camera is also rising.

When patients know what to do, they can do it right, right now. The sooner you deliver the right care, the lower the cost and the higher the quality, as you prevent disease progression. In every country, the clinical workforce is overstretched. They need the patients to understand and act, and patients who do so will have better care and better health.

This means that in practice, right now, patients are the latest and largest providers of care. It’s the patients who inject insulin for their diabetes, take the inhaler to prevent asthma attacks, and use the dialysis machine at home. If you realised the importance of these patients – users who are providers – you would design the health care system differently. You would design to deliver with the patient, not to the patient.

You would make sure the patients have access to all the data, immediately, so they can act right, right now. You would make sure the data comes to the patient in a computable way. In other words it has to have medical coding systems so that medical knowledge can be applied to it automatically. And you would allow the patient to share that data with any party they want, so they can get the latest support from digital tools. Apps that focus on your disease, or simplify for your learning disabilities, or that adjust for the blind or adapt to your way of thinking. That is how you design for the workforce of the future – the patient.