Summary
My Diabetes My Way is the NHS Scotland interactive website for people with diabetes and their carers. It contains a variety of validated, tailored multimedia resources aimed at improving self-management, and provides users access to their clinical data, using information captured via the NHS Scotland shared electronic record. The system allows patients to become more active participants in their diabetes care and users have reported that it improves their knowledge, motivation, self-management, goal-setting and helps to act as an aide memoir for information discussed during consultations.
Results
Before accessing the system, 144 of 176 (82%) MDMW registrants completed an evaluation survey. They had a high level of computer literacy and the age distribution was younger than the general diabetes population. Uptake was higher in people with type 1 diabetes (35%) than those with type 2 (65%). A quarter (26%) were worried about security but proceeded with registration.
After a year of live use we implemented a second survey with 55 respondents, of which 89% believed the system contained all the features they expected. We also had high satisfaction for ease of use, better understanding, better use of consultation time and confidence in data security. In addition, a significant number of patients signed up within the year following diagnosis, indicating that newly diagnosed patients actively look for online resources.
Provisional data demonstrates that those who have accessed the system show significant improvements in clinical outcomes, including blood pressure, weight, cholesterol, creatinine and HbA1c one year after login. Work will continue to expand on these data for peer-reviewed publication.
Challenge
A recent report in Diabetic Medicine predicts NHS annual spending on diabetes will increase from £9.8 to £16.9 billion over the next 25 years (17 per cent of the entire NHS budget). NHS Scotland has recommended focusing on care that is quicker, more personal and delivered closer to home.
Diabetes in Scotland has increased from 103,835 (2 per cent) in 2002 to 247,278 (4.7 per cent) in 2011 and previously healthcare provision was organised around staff availability and infrequent clinic appointments. Using the internet and electronic personal health records (ePHRs) offers the potential to shift the balance of power to health care users and engage patients in managing their own health. Previously there have been no systems worldwide offering a fully population-based, focused ‘shared electronic record’ for diabetes.
Objectives
My Diabetes My Way (MDMW) is the NHS Scotland interactive website for people with diabetes and their carers. It contains a variety of validated multimedia resources aimed at improving self-management. These include traditional information leaflets, interactive educational tools, videos describing diabetes-related complications and testimonials from people with diabetes talking about their experiences.
The project team designed a system to link MDMW to SCI-Diabetes data to allow patients access to their clinical information, from all relevant diabetes information sources.
This ePHR is available to every individual with diabetes in Scotland aged 16 or older.
It aimed to identify what expectations and benefits patients perceived and to then show that the new system would improve patient knowledge, motivation, self-management, goal setting and help to act as a reminder during clinical consultations. Finally, it aimed to show that access to an ePHR can have a positive effect on clinical outcomes, something not presently well understood within the peer-reviewed evidence-base.
Solution
A project Editorial Group of patients, healthcare and IT professionals oversaw the design, development and management of the MDMW ePHR. Before launch patients were surveyed to establish their expectations and after the first year a follow-up survey investigated whether those expectations had been met. Further data has been gathered using focus groups, one-to-one structured interviews and by engaging with volunteer groups. Quantitative analyses of user activity were completed following years one and two of live use and an impact analysis has begun.
The website address is referenced on hospital diabetes clinic and all diabetic retinopathy screening letters. A campaign was launched in August 2012 in collaboration with all community pharmacies in NHS Scotland, which saw website information materials handed out with all diabetes-related prescriptions. Work continues to allow access to 5,000 people by the end of 2013.
Evaluation
Access to clinical correspondence was originally made available for the first three months but this was withdrawn following concerns that the contents may refer to third parties who had not consented to being identified, may be written in a style that is difficult to interpret, or contain information not discussed during consultation. The project has engaged with staff to educate them about the Data Protection Act 1998 and consequently several clinics have now reintroduced access to letters.
A useful way of retaining engagement has been identified from experience, rather than by design. Each month, project newsletters are emailed to the patient group and this consistently results in a flurry of additional activity on the system lasting several days.
The system is now a useful additional component for the self-management of diabetes in Scotland. Patients report that access to records helps them with their self-management, with 98% also indicating that it leads to a more productive consultation with healthcare professionals.
Impact
The project meets the original objectives by engaging patients and allowing them to become more active participants in their diabetes care. Patients report that it improves their knowledge, motivation, self-management, goal-setting and helps to act as an aide memoir during consultations.
The system has been designed to link with other appropriate clinical records. For example, if a suitable data source was available, an NHS organisation would be able to integrate, giving their patients the ability to make use of the functionality developed. Links beyond NHS Scotland are yet to be formally established.
My Diabetes My Way has demonstrated itself to be person-centred, effective, safe, timely, efficient and equitable – providing a service that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, or socioeconomic status.
