1 in 10 people in the UK live with diabetes and if poorly managed, the condition can lead to heart disease, vision problems, kidney disease and other complications. However, if managed properly, people with diabetes can live a healthier life – and information standards, sharing and personalised care are all crucial to supporting better care management.
PRSB is developing two data standards that will enable key information about a person with diabetes to be stored and shared between them, their carer and health professionals as well as enabling the information collected to be used for other purposes such as population health management. While the first standard focuses on ensuring professionals can share this information between different care settings, the second standard will be for reporting and transferring self-reported data (e.g data from glucose monitors) seamlessly between apps and clinical systems.
We held four online consultations this month for the standards, two for diabetes professionals and two for those with or those caring for someone with diabetes, and we were pleased to have over 50 participants in each webinar which made for a varied discussion.
The first webinars focused on diabetes care plans and the project’s clinical leads, Dr Neel Basudev and Dr Iain Cranston asked participants for their experience using care plans and their thoughts on what test results, investigations and observations should be included in an ideal diabetes care plan. Those with lived experience of diabetes raised many issues they faced when constructing a care plan with their clinician including whether information is routinely shared between secondary and primary care. For example, one person with Type 1 diabetes said that while their consultant has up-to-date and complex test results available to populate their care plan, they felt their GP didn’t have access to this information and was much less informed of the state of their diabetes more generally.
Another person said: ‘The webinar was great and it was useful to hear the experiences of others living with diabetes. I think the key information for me is having my time in range data. The reason for this is because I have a greater insight into what my glucose levels are doing and how my insulin is working. I would like my conversations with my Consultant or Diabetes Specialist Nurse to be a joint conversation on an agreed course of action. I believe that going forward consideration needs to be paid to the inequalities people face and the impact this has on people living with diabetes’.
The standards are being developed to include the requirements of both adults and children with diabetes, and Sara-Jane McAteer, a parent of a teenager with Type 1 diabetes, offered her view on the specific circumstances of teenagers the standards will need to consider:
‘I am a parent of a 15 year old with type 1 diabetes and also an 18 year old with no condition. We are currently navigating the transition of care to a GP in a university town. I wanted to point out that the standard should consider the needs of teenagers particularly with emphasis on when they become 16 and more in charge of their data and when they move away and therefore have shared care between areas.’
If you would like to know more about our diabetes standards, please contact firstname.lastname@example.org.