NHS Scotland Diabetes On-line Records Service

[Dougie22]

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.

 

[Terminator 2]

Thanks for the heads up

Details submitted.

 

[lister]

wow that sounds really good wish we had this service on our nhs would help loads..

 

[Dougie22]

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.

 

[brambles]

Thanks for the info. Despite being diabetic for 17 months I have never heard of this service-should our health centres not be keeping us informed?

Anyway I have registered (asks for CHI no, I guessed this was the no at the bottom of my presc which starts with DOB? Anyway no doubt they will tell me if that is wrong) and also applied to go on the research register.

Thank goodness for diabetes.co.uk website for keeping us informed of what is happening, as no one else seems to.

Thanks again

Susan

 

[Adam63]

I applied for this over a month ago with no response not even an acknowledgment.

It has been my experience that the Diabetes provision through GPs in Glasgow is
rather degenerating. They are raising the thresholds for diagnosis and the
targets for HbA1C.

I want to get my HbA1C levels into the low 6's 6-6.5 but am being told this is not necessary
and that a level of 7.1 is very good.

I feel my long term health is not being cared for sufficiently, and that here in Glasgow the medical
establishment are only concerned with short term problems.

 

[goboldly]

Dougie22

How long did you wait I applied about 6 weeks ago,
did get a mail shot info from them on application but now waiting

Thanks
Andy T.

 

[Adam63]

I have still not received any acknowledgement from the Online Records Service.
I emailed them a week ago and did not even get a reply.

This may be mere window dressing to make us poor sods think the NHS has
our best interests in mind.

It surely cannot take two months to set this up !

I was hoping to have this information before I tackled my GP about what is
an appropriate level for my sugars in my individual situation.

 

[didie]

I've just registered and will wait to see if I hear anything.

 

[Dougie22]

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.

 

[didie]

I've received the letter from Ninewells Hospital with all the information about the service this morning. I'll take the form which has to be signed by the health care professional and information for staff leaflet down to the surgery next week and leave it for my doctor to sign.

 

[fairylights]

I registered for this last week and have received the letter for my GP to sign more or less by return of post. I'm going there next week so I;ll just take it then. But maybe they have speeded things up a bit.

 

[granny3boys]

I applied for this a while back and put the password and log-in address away and totally forgot about it. So looked tonight. It certainly makes you (meaning me) think when the results are in black and white. My latest results are not on it yet, so will get them from the nurse tomorrow. Expecting a good telling off from her as I've not been so good(cancer scare, so a lot of comfort eating. Then got the all clear, eventually). But I get so confused about what I can and can't eat, mainly fruit wise as I'm a real fruit person - used to be chocolate, but I've changed sides!

 

[BaliRob]

Adam63 - Hb1AC level of 7.1 is not, as your doctor says, fine. You go for the target levels you have set yourself and lower if possible. Good luck - Rob

 

[nosty]

I am new here and I am probably breaking the rules, and for that I apologize. I had wanted to send a pm to the administrators but I gather that my account is too new.

I am from Canada, and I was diagnosed with diabetes in 2000, I did as so many diabetics do and that was ignore the diagnosis. In June of 2009, it resulted in the partial amputation of my left foot. While recovering I started working on my own website to help track blood glucose, blood pressure, weight, an exercise log, a sleep log, a food log, and we are adding more parameters daily. We are an entirely free service for diabetics because every time diabetics turn around, someone is asking them to pay for something else.

I will not mention the website here in the public forums because I don't want to upset the administrators or the moderators of the board. If anyone IS interested please let me know!

Regards,

Lary

 

[Dougie22]

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.

 

[Anonymous]

I signed up on that site about 5 or 6 weeks ago...Finally got my username and password today and they wont log me in...So followed the instructions and sent an email, only for the email to come back as a failed delivery....arrgghhhh....So now i have to call them and try to get a new username and password....I made no mistakes in my input...So really annoying, I just want to be able to access my data as I dont seem to be getting told much from my GP...

 

[Anonymous]

Finally got a new username and password and got logged on to finally get some results...Cant make head nor tail of them yet though, can someone tell me if I'm really bad or just about average??

HbA1c: [no result available] Havent had my 3 month appointment yet
Blood Pressure: 141/89 mmHg on 18/06/2012
Total Cholesterol: 5.7 mmol/L on 10/07/2012
HDL Cholesterol: 1.10 mmol/L on 10/07/2012
LDL Cholest: [no result available]
Triglycerides: 2.4 mmol/L on 10/07/2012
Creatinine: 56.0 umol/L on 01/11/2011

Thanks :? :?

sharon

 

[Dougie22]

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.

 

[Anonymous]

Thanks Dougie, new to all this, so its like trying to walk through a concrete wall at times lol

Thanks again