NHS Scotland Diabetes On-line Records Service

Not sure where to post this - maybe a moderator could pick it up and put it in the approriate place on the site.

Scottish diabetics have access to a service called "My Diabetes*My Way". I've just recieved my logon and password in the last couple of days.

As well as having the usual links to NHS advice, videos and the like, and maybe some new stuff, this site allows you to view a limited selection of your medical records on line, including:

* Weight as recorded in your surgery (mine gotes back to 2000) and BMI
* HbA1c results (as I'm only diagnosed this year, I've only got two entries so far)
* Blood Pressure as recorded in surgery (mine goes back to 2000)
* Total cholesterol (not LDL, HDL, etc) (again from year 2000)
* Creatinine levels
* Eye and foot screening results
* Medication history (mine goes back to 2002)

It is supposed to be updated at more or less the same time as your doctor gets the results but I got a phone call last night from the surgery and those results haven't appeared yet. Hopefully they'll arrive in a day or so.

It's supplied through the Scottish Governments Citizen's Portal (Onescotland) so setting up access takes time and it's a bit clunky, although there are some simple graphs.

Your GP does not need to give permission for you to gain access but does have to confirm your identity before your account can be set up.

Information at http://www.mydiabetesmyway.scot.nhs.uk/

Unfortunately I think they'll only deal with Scottish patients as our data is held on different databases, etc (and presumably for funding issues) but there may be an English, Welsh or Irish equivelant in the works.

You can try this one supplied by Osidge. I have no experience of it.

Here is the UK website: https://www.healthspace.nhs.uk/visitor/default.aspx I think access to records will depend on whether your surgery has transferred the details.

Hi all,

Sorry - I've not been on the forum for some time so didn't pick this up.

I did say on one of my early posts that it seemed to take ages to set up. In my case it probably took about three months end to end including the five weeks or so it took me to get my doctor to sign the form. It is now taking more than two weeks from the time my results are available from the surgery till they appear on-line. I have contacted the operators several times via the site and have always recieved a reply within a few days but that is after I became a user. If you can, keep pestering them.

I'm in the IT profession and I'm afraid that this site shows all the signs of being created from good intentions but without any funding or commitment from above. There are several aspects that are clunky (for example, it takes about 5 different actions to log off) possibly due to it being grafted on to the citizen portal site. There's also a lack of clarity about how it works in practice. It looks to me that my results come from being typed at the surgery (who are in no hurry to update the records) rather than coming directly from the lab. My surgery appears to get the results in physical form via a "man in a van" rather than electronically so it's not a seaml;ess electronic transfer or anything like it.

If you can eventuially get on, it's worth it as you get quite a lot of history and detail that I, for one, was unable to get directly from my doctor (who prefers patients to do as they are told, rather than be informed and active in the management of their condition).

Again - apologies for lack of a reply sooner.

My Diabetes My Way Records Access: Year 1 Evaluation (Copied and pasted from MDMW service)

Posted: 31/07/2012


Introduction

My Diabetes My Way (MDMW - www.mydiabetesmyway.scot.nhs.uk) launched its web-based records access module in December 2010. This module allows every person with diabetes in Scotland access to their electronic 'shared diabetes record'. It contains information captured from primary, secondary and tertiary care, laboratories and specialist screening services, therefore comprising a comprehensive overview of diabetes healthcare.

After the first year of use, we surveyed registrants in order to gauge their opinions of the system and the processes involved in gaining access. We also analysed system audit trails to better understand how the system was used.

Results

At the end of the first year, 361 individuals had registered, 216 (59.8%) had completed the enrolment process and of these, 160 (44.3% registrants; 74.1% enrolled) had logged in to access their diabetes information. 59% were male and 31% of all registrants had type 1 diabetes, compared to a background population prevalence of 12%. The age distribution of the respondents showed that those signing up for records access were, in general, younger than the overall diabetes population in Scotland.

During the first year, 160 users accessed the system (most logins=164), with 1425 logins in total (average=9/patient; median=4). Audit trails show 17745 page views (111/patient), with 'test results' proving the most popular (3216 accesses, 20/patient). The most utilised history graph was, unsurprisingly, HbA1c (792 accesses, 5/patient).

We analysed user experiences of the system using an electronic survey containing a combination of closed and open-ended questions. There were 55 respondents, of which 53 (33.1% of active users at this time) had successfully logged in to access their diabetes information at least once.
•89% believed the system contained all the features they expected.
•83% said that the system helped to remind them of information discussed during consultations.
•98% believed the system would help them make better use of their consultation time.
•73% said that the system means that they do not need to keep paper records.
•73% said the system means that they do not need to phone their doctor for new results.
•77% said the system was up-to-date.
•94% said the system was easy to use.
•89% said that the explanatory information helped them to understand their results better.
•90% said the tailored links helped them to find further information relevant to their diabetes.
•93% said that the graphs of information were helpful to monitor changes over time.
•100% were confident that their information was secure when using the system.
•81% said that the system has helped them manage their diabetes better.
•79% said that accessing their information has helped to improve their knowledge of diabetes.
•89% said that accessing their information has made them more motivated about their diabetes.
•79% said that accessing their information has helped them to meet their diabetes goals.
•89% said the system would help them to set their own diabetes goals.
•96% said that online access to diabetes information will significantly improve diabetes self-care across Scotland.

In open-ended questions, the following points were mentioned most often:
•The current user name format is not easy to read or remember.
•Clinic letters, which were originally available when the project launched, must be reinstated.

Discussion

While the system was well received and is clearly providing significant support for patient self-management, there are some areas that can be improved and enhanced further.

MDMW are currently working with the Citizen Account team to streamline the registration and enrolment process to reduce the number of manual processing steps, leading to a significantly faster turnaround than the present situation where, in some cases, it can take several weeks from initial registration to final access. Automated interfacing is due to be implemented from August 2012. The Citizen Account will also allow users to change their username to their email address as part of this upgrade.

To further enhance the enrolment and registration process, and to enhance user support, MDMW are to employ a project administrator. The remit of this role will be to ensure that all steps of patient enrolment are continually progressing and to ensure that registrations are completed in a timely manner. Furthermore, the role will involve support and issue tracking to ensure that any feedback raised by users are acknowledged and tackled faster than they are presently.

A process has been defined to allow hospital diabetes clinics to sign off to allow the sharing of clinical letters. This ensures that staff' have the opportunity to be trained on what is, and what is not acceptable content for these letters. One clinic has already approved the reintroduction of letters, back-dating those available to 01/01/2000 and the objective is now to encourage the remaining clinics across Scotland to follow suit.

Conclusion

The overall conclusion of the evaluation is that the system is now a useful additional component for the self-management of diabetes in Scotland. Users report that it helps them in their self-management, with 98% also indicating that it leads to a more productive consultation with healthcare professionals.

Despite these important benefits, it is acknowledged that the project is currently only reaching a small proportion of the wider diabetic population (~250,000), many of whom are likely to benefit from this initiative. To this end, an awareness campaign has been devised in order to reach a target of at least 5000 registrants by the end of 2013.

HI Sharonmac,

Most of the graphs on the "My Diabetes, My Way" have red dotted lines on them to show the "normal" range.

BP has lines at 140/80 , Total Cholesterol at 5.0, HbA1c at 7.0

There are also usually accompanying notes - just click on the blue question mark. BP suggests 130/80 rather than 140/80, confusingly.

For my money, HbA1c is the single most important number.

Everyone has a different view of what's acceptable for these figures. You will have to form your own view.

I'm sure you'll get some opinions.