My Diabetes: Information for Staff

My Diabetes My Way Patient Access gives patients Internet access to their own diabetes data held on SCI-DC, with explanatory links.

It shows:

• Diabetes diagnosis and treatment
• Lifestyle and blood test results
• Foot and eye screening information
• Hospital Clinic letters
• GP Prescribing data

This leaflet explains what information will be available to patients and how staff can support the process

What is needed for a patient to be added to My Diabetes My Way?

The patient must be registered on SCI-DC in order to allow access. As information comes from existing records, no extra data entry is required and the enrolment process will be completed by SCI-DC and My Diabetes My Way.

How does a patient join?

They sign the enrolment form after seeing leaflets, posters or a demonstration. A healthcare professional is then required to countersign the enrolment form and verify the patient's identity.

Verification is required as this project is seen as a trusted NHS source for patient identification by the 'Citizen's Account' system which handles usernames and passwords for the project. The 'Citizen's Account' is a Scottish Government initiative aiming to allow secure electronic access to various public services.

Once the completed enrolment form is returned, the My Diabetes My Way team may contact the healthcare professional via email to confirm the verification, and will inform the patients GP as a courtesy if they have not been involved in the enrolment process.

How does it work?

Once the patient has enrolled, My Diabetes My Way makes information from the patient's SCI-DC electronic record available securely online. The relevant information is collected from computer systems related to diabetes care such as:

• GP systems
• Hospital clinic systems
• Other computer systems relevant to diabetes, such as the national retinopathy screening system

What information can the patient see?

The system links to educational materials about the patient's diabetes and its treatment. It shows blood test results, clinic letters (if they are on a hospital system), prescription information, foot and eye screening results and much more. See the 'Patient Information Leaflet' for some examples. Information is updated from SCI-DC once a day so that it can be kept up-to-date. Data is currently limited to key diabetes markers including HbA1c, blood pressure, BMI and cholesterol.

Security and confidentiality

My Diabetes My Way Patient Access uses industry-standard security throughout all parts of the system, similar to those used in Internet banking. All information is encrypted during transmission. The web server used is very secure and is hosted by the Health Informatics Centre at the University of Dundee, specialists in clinical data management.

No information can be written back into GP records at present. An external review of the system's security is undertaken at regular intervals and all user actions and access attempts are logged.

The 'Citizen's Account' handles all user authentication details and has systems set up to support secure printing and distribution of usernames and passwords, similar to those used in the banking industry.

Benefits

Access to a clinical data has been shown in previous studies to empower patients to become more actively involved in their care. It also increases awareness of clinical guidelines and targets, along with the reasons for setting these goals.

Renal PatientView, a similar NHS system allowing patients access to their renal clinic records has reported that patients:

• Felt 'in control' of their record
• Had additional understanding of disease
• Made fewer phone calls to the clinic
• Had no increased anxiety

Important Information

Some of the implications of showing data to patients in this way are obvious, but some are less so.

Data Validation: In order to restrict the presentation of obviously erroneous or contentious data held within SCI-DC, a validation process will be performed to 'clean-up' the data that will be made available to the patient. This will include results out-with valid ranges, marked against dates in the future or letters and comments that are no longer relevant.

Results: Patients may see results before you do, or before they have been discussed with a healthcare professional.

Patients are advised that if they have any queries regarding clinical information, then they should contact their usual healthcare provider for further information.

Technical Issues: My Diabetes My Way will handle all technical issues raised regarding incorrect or missing data and problems with the website. Usernames and password changes will be handled by the Citizen's Account. My Diabetes My Way will endeavour to support the system as much as possible in order to minimise the impact on care providers.

Letters: These are restricted to hospital clinic letters at present. If you are based in a hospital diabetes clinic, please note that all clinical letters at your clinic will be available to the patient to review

Future development plans

As the project evolves, several new initiatives have been proposed to further enhance the system and to increase patient involvement in the system. These include:

• Patient notification of new data (email/SMS)
• Patient-recorded results to SCI-DC including: blood glucose, blood pressure, cholesterol, weight, waist circumference, etc... It may be possible to 'back-populate' these to GP systems if this is desired
• Foot ulcer image upload
• Management of non-urgent clinical queries and feedback
• Access for parents/carers
• Expanded data set
• Appointment booking for Retinopathy Screening

As well as the technical developments and audit and evaluation is planned with patients and staff involved in using the system of managing patients who use the system.

If a patient wishes to withdraw

A patient may withdraw at any time and their data will be removed from the My Diabetes My Way Patient Access system.

What is My Diabetes My Way?

My Diabetes My Way is the NHS Scotland Diabetes information website, funded and supported by the Scottish Diabetes Group.

My Diabetes My Way has an Editorial Group involving healthcare professionals involved in the management of patients with diabetes, who ensure that the supporting literature is up-to-date and relevant.

The group consists of General Practitioners, Hospital Clinicians, Allied Healthcare Professionals, Patient Representatives and Information Technology Specialists.

You can contact us at any time to request more information at mydiabetesmyway@nhs.net

Where can I find out more?

The following websites contain information on diabetes and the systems in place to support the project:

• http://www.diabetesinscotland.org.uk/ has information about diabetes in Scotland
• http://www.diabetesinscotland.org.uk/Groups.aspx?catId=C6 has information on SCI-DC, the NHS diabetes system used by daily by healthcare professionals

View the pdf version of this leaflet