An online system that helps patients monitor their own medical records is being rolled out across Wales by the government following several successful pilots.
Patients Know Best (PKB), an online portal that draws together patient data from a range of institutions, was successfully piloted at Abertawe Bro Morgannwg University Health Board (ABMU).
ABMU went on to establish a national framework to allow other NHS Wales organisations to buy and implement the system. The organisation will invest £350,000 in the initiative over a two-year period.
Vaughan Gething, the Welsh cabinet secretary for health and social care, has approved the framework and, from this month, PKB will be initially rolled out to diabetes patients in Wales.
Other existing systems are either centred around an institution or a disease, meaning data from different hospitals, clinics or doctors cannot be collated, said Mohammad Al-Ubaydli, PKB’s founder and chief executive officer. “Every patient has a unique combination of diseases and providers and if you don’t join them up into one system you end up with fragmented healthcare. Fragmented care is unsafe, inefficient and expensive.”
PKB is already in use in 19 different languages at more than 60 hospitals throughout the UK, Australia, Ireland, Germany, Hong Kong, the USA and the Netherlands.
“Patients with long-term conditions are 20% of the population but account for 80% of the health budget,” Al-Ubaydli said. “When these patients can self-assess and self-manage, costs go down but also, quality goes up.”
But Al-Ubaydli admitted that some patients may be too ill to manage their own records.
To ensure patients do not lie or misuse the system, PKB maintains the editorial rights of each author. For instance, patients cannot change diagnoses, prescribed medication or laboratory test results. Health professionals are not able to change anything written by patients and data points can be deleted or modified only by those who added it.
PKB is part of a wider effort to digitalise medical records, with the UK government pledging to make the NHS paperless by 2020.
“Patients are the owners of the their health information,” said Samm Anderegg, chief executive officer of DocStation, another electronic health record system. “Data standards should be leveraged and software vendors need to make it a priority to make patients’ own data available to them.”