I’m Bruce Elliott from Co Durham in North East England. I have had Type 1 Diabetes for 53 years and have been an active campaigner for Diabetes UK ever since and have had a full and active life and career in HR for the last 25 years of my career in the NHS. I am now an active volunteer and carer.
Dr Richard Fitton asked me to see if I could find the QOF markers of my diabetic care within my lifelong GP record. Much has improved over the past 20 years in the use of mobile technologies by Type 1 Diabetics, such as Freestyle Libre, to help me to self-manage my condition and this has helped to supplement many of the results that I would have relied on my GP record for. Although many fellow Diabetics have access to Freestyle Libre to monitor blood sugar levels, few if any that I know have access to their GP record to view their test results online. Even for those who can access them online I believe that they would need a good level of health literacy to find them within their lifelong GP record.
No Clinicians have ever encouraged me to access my own records to view my test results and explained how this may help as a tool to improve self-management of my condition. I hope more clinicians will encourage record access as a vital tool for improving self-management.
When I gained access to my records in 2012 I was able to see my own HbA1C along with many other test results. These results appeared complex but the hyperlink: ‘more information about this test’ to “Labtestsonline“ was incredibly educational and helpful. Although the GP record system that my practice uses ‘Systmonline’ does not appear to have ‘usability’ built into it, I wouldn’t be without it.
The NHS App, is a slight improvement in terms of usability in searching for test results, but the warning notice when you access gave me the impression that doing this may be extremely risky rather than it being a great tool to help me manage my health more effectively.
My experience in finding all the QOF markers in my in my GP lifelong record is summarised below:
Cholesterol level:– found under ‘serum lipid’
Blood pressure level:– found by checking back to notes when blood tests were taken as part of my Diabetic Annual Review
Albumen creatinine ratio:- appears as 2 separate tests and as the ratio only in the ‘test results’ section of my GP Record accessed via the NHS App after searching by date.
Referred to an education program – Although I attended one back in 2013 I couldn’t find it after skimming through all my historical notes
Retinal screening - Found within notes and documents. This is also shared by letter with me each year.
Foot examination - I have an annual check which is done at the same time as my retinal screening however I couldn’t find it in my records which may be due to me not requiring any further attention.
I believe the fact that results are displayed by their actual test name e.g. ‘Serum lipid levels’ rather than, for example, ‘Test to show your cholesterol level’ could be a major limiting factor for patients searching for GP QOF markers.
In summary I find the resistance of what appears, in my experience, to be the vast majority of Clinicians to record access and the importance of encouraging self-management to be a major obstacle to making best use of our information to improve health.
You can read more about my views on this topic from a blog that I wrote for the Patient Information Forum and NHS Academy of Fab Stuff in 2017 at: https://fabnhsstuff.net/fab-stuff/digital-leadership