Diabetics in Wales get Patients Know Best record

Young adults in Wales with diabetes will be able to control who sees their Patients Know Best (PKB) medical record.

From June, people between the ages of 16 to 24 will be able to register for a (PKB) record across all seven health boards in the country, in a year-long pilot.

PKB is a fully patients controlled medical records system and is in use in northwest London where it covers patient data across eight clinical commissioning groups (CCGs).

Julia Platts, national clinical lead for diabetes in Wales, told Digital Health News that the “transition” time between paediatric and adult care can be difficult.

“What we find is that those late teenage years, early twenty years, are very difficult for the young person. They’re just very difficult for getting good diabetes care.”

“Patient Knows Best puts the patient right at the centre of their own care.”

“The system enables the person with diabetes to decide who they share their health record with”, Platts said.

These people could be healthcare professionals, specialist nurses or other people involved with the diabetic care, and the system also allows for a direct message function.

Platts hopes for better engagement with young adults who have diabetes. On whether she sees any issues with the pilot, Platts said, “lack of engagement, either on the part of the person with diabetes or on the part of the staff, is our biggest challenge”.

Mohammad Al-Ubaydli, chief executive and found of PKB, described putting young people in control of their medical records as “therapeutic”.

“We know young people with an illness are particularly upset about the loss of control of their lives from illness. They often respond by disengaging, I certainly did so in my teenage years. We also know that outcomes are better for patients the more they engage to look after their health.”

The news for young adults with diabetes comes as PKB and ABM University Health Board (ABMU) has established a national framework for its use more widely across Wales.

The framework has been approved by secretary for health and social care, Vaughan Gething, and will allow other NHS Wales organisations to buy and implement the system.

The PKB and diabetes initiative is to support the Diabetes Delivery Plan, which is the government strategy for diabetes services in Wales.

PKB is also in use in NHS organisations across Surrey, where clinicians to view a single digital care record across four NHS trusts, GPs and four CCG areas.

In Wales in 2015-16, 7.3% of the population aged 17 or over live with the diabetes.

In a report, published 23 June, by NHS Digital on transition in diabetes care it described the time as “particularly sensitive to disruption with both short and long-term health effects”.