In 1988 I was diagnosed with a rare immune deficiency. It is the single most important thing a doctor needs to understand about my health if they are treating me. My GP, whose general practice looked after me since I arrived in Cambridge in 1986, made a note of this at some point in 1998.
The first population-wide personal health record (PHR) contract was the G-Cloud contract of Patients Know Best in 2015.16 hospitals, 400 GP surgeries, 2.4 million people
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
Attending a customer’s programme board for the first time can be nerve-wracking. In June 2015, we had just signed North West London (NWL), who aimed
Today is Rare Disease Day. But health care is misunderstanding health by treating rare disease as the exception rather than the rule. Rare diseases are
When the NHS trained me to save my life, I in turn saved its budgets. I experienced this as a patient with a rare disease.