I’m delighted to announce the release of my new data-linkage pseudonymous patient portal msdata.org.uk.

This brings the full power of my existing electronic patient record (EPR) - currently hosted and only accessible within NHS Wales - to the Internet.

Importantly, no patient identifiable information is stored, but instead, the system acts as a data-linkage platform, allowing information entered from patient-held devices and clinicians outside of Wales to be brought into the EPR.

Here, one can see how many relapses a patient has had due to multiple sclerosis:

MS relapses

Importantly, while we have over 20,000 patients registered with a variety of disorders, wouldn’t it be useful to show clinicians and the patient how they are progressing compared to patients with the same disorder.

Fortunately, while there are lots of SNOMED-CT concepts that mean the same as “multiple sclerosis”, it is possible to use the SNOMED-CT hierarchy to derive semantic understanding of the relationships between terms. In this way, we can easily find patients with say, a type of motor neurone disease, even if they have been recorded as having “progressive bulbar palsy”.

Here, we chart a single patient’s progress over the years compared to a whole population-based cohort of patients’ progress. The median progress of the whole cohort is shown with a dotted green line. Just like a growth chart for a baby, a patient crossing the centile charts is either doing better or worse than expected. The EDSS is a score of disability in multiple sclerosis.

MS progress

As an added bonus, we can chart the use of disease-modifying treatments as well.