Terms of Enrolment into the BEAT Diabetes Programme
The aim of the BEAT Diabetes Service is to provide a self-referral service to those who wish to receive online support for their diabetes. Three online tools are available which can be used either individually or in any combination.
For the purposes of this document an individual participant with type 2 diabetes who is age 18 years or older may enrol into this service and will be term the ‘User’
The user will require access to a digital device with either internet access or access to APPs.
The user will be required to provide the following mandatory information to register on the www.beatdiabetes.org.uk site:
- First Name and Surname
- Contact Phone Number
- Date of Birth
- Name of Registered GP Practice
This information will be stored on the www.beatdiabetes.org.uk hosting server Rackspace which is a secure server that meets the NHS standard for cyber and data security. The user will be assigned a unique reference number (URN) for pseudonymisation purposes.
Clinical Data Capture
The user will be sent an email following registration. This email will have two questionnaire documents attached:
- Brief Clinical Data Questionnaire
- The Health Questionnaire
The user completes these. No patient identifiable data is contained within these questionnaires. Only a URN is used on these forms. The user emails these back to the BEAT Diabetes team. The user will have the option of telephoning the data direct to the BEAT Diabetes team should they prefer this method. Following completion and return of the two questionnaires, the user may be requested to undertake a blood test to check HbA1c (measure of diabetes control) and cholesterol. This will be done by way of a postal blood testing kit sent and processed by Medichecks. The user will be notified and email consent received prior to the blood kit being posted to the user. The user agrees to the sharing of their date of birth and address with Medichecks to allow for sending and processing of their blood result. Medichecks will assign a user ID to the blood test and the HCA will enter the user URN number in place of the user’s name when ordering the test. The user will be given the option to log into Medichecks portal to view their blood result. Should the user agree, through email consent, for this optional service, Medichecks will additionally be provided with the user’s name and surname details to allow for this.
- The Brief Clinical Data Questionnaire
Upon receipt of a return email to the BEAT Diabetes team containing the completed Brief Clinical Data Questionnaire, the clinical data will be entered into a secure EMIS electronic patient record which is secure and only accessible by a health care assistant (HCA) contracted under Salus Medical Services and staff at Salus Medical Services who process this data as described below.
The clinical data captured by the ‘Brief Clinical Data Questionnaire’ collects the following information from the user:
- Source of referral
- Blood pressure
- Smoking status
- Alcohol status
The HCA will check the blood results for the user on the Medichecks portal and these too will be entered into the secure EMIS electronic patient record. A copy of the blood results and clinical data captured will be sent to the user’s GP.
The HCA will capture further data which may be obtained from the users medical record held by their GP or by way of a brief summary history provided by the GP. The user will consent to access of the specific data given below when completed the online registration process at www.beatdiabetes.uk. A copy of the user’s consent may be sent to the GP providing the necessary authorisation by the user to allow for access to/release of this information to the HCA.
The further data captured will include whether or not the user has a medical history of any of the following conditions:
- Previous Stroke/TIA
- Congestive Cardiac Failure
- Peripheral Arterial Disease
- Renal Replacement (Dialysis)
- Renal Impairment (categorised by stage using the most recent measure of eGFR 3a, 3b, 4, 5)
- Ischaemic heart disease
The HCA will also record the name and dosing of the user’s current diabetic medications and also the length of time that the user has had Type 2 diabetes for.
The user’s name, address, postcode, date of birth and gender will also be captured by the HCA and entered into the secure Salus EMIS electronic patient record.
The HCA is contracted under Salus Medical Services to run the remote BEAT Diabetes service which enables email and telephone contact with users and registered practice to capture the required information listed above. Only the HCA contracted under Salus Medical Services and Salus Medical Services will have access to this level of detail. The HCAs and project lead undergo data protection and confidentiality training to ensure that your data is kept secure. User identify will therefore be kept secure and will not divulged to any other parties without the expressed consent of the user. Dr. Sarah Carrod, the project lead will also be able to view this level of data to ensure quality control and accuracy of data collection and input into the BEAT Diabetes EMIS secure electronic patient record.
The above information is important because it will be used in the evaluation part of the BEAT Diabetes service and compared to other people with type 2 diabetes who have similar conditions to assess whether the BEAT Diabetes Service has worked when compared to existing diabetes services.
The reason for collecting the user’s diabetic medication information is to assess whether, over time, there is a reduction in the need for diabetic medications when taking part in the BEAT Diabetes Programme and whether this is sustained over the longer term period of 12 months.
At 6 months and 12 months from first accessing the BEAT Diabetes programme, the user will be required to have the two questionnaires completed again with a further postal blood test as detailed above. Again this will take place by email or telephone in the same way as described for the baseline data capture.
At monthly intervals, data inputted into the Salus EMIS electronic patient record will be extracted removing all personal identifiable data. The following personal identifiable data will be extracted:
- Full Name and contact details such as address/phone number/email address
- The last two digits of the user’s postcode
- Users will be grouped into 5 yearly age bands thus not divulging a user’s precise age
Only the URN will remain to differentiate each user. This therefore renders the data non-identifiable thus protecting the user’s personal identity. At this point the data will be sent by secure password protected email to the evaluation partner, the University of Surrey.
- The Health Questionnaire Data Capture
A user will be emailed, as described above, a health questionnaire. This questionnaire is made up of three components when first registering to take part in the BEAT Diabetes:
- Diabetes Distress Questionnaire
- Work and Social Adjustment Scale
- EQ-5D-5L Questionnaire
The questionnaire is then repeated at 6 months and 12 months (and possibly at 3 months), but on these occasions it will include an additional component called the ‘Friends and Family Test’. All four components contain tick box style questions, some of which include a small number of open questions. Only the user’s URN will be used as the reference in these questionnaires and no other personal or identifiable data will be used.
The user will be sent an email containing the health questionnaire before starting the BEAT Diabetes online service (otherwise known as baseline) and at 3 months, 6 months and 12 months from first commencing the service.
The completed questionnaire will be email back to the health care assistant at BEAT Diabetes. The questionnaire, containing only the URN, will then be sent by password protected email to the evaluation partner, the University of Surrey.
Activity Data Collection for each online tool
In order to assess user experience and to try and understand and improve the services we offer, it is important to understand how the user utilises the three online tools. Each of the three online tool providers (SilverCloud, Second Nature and Commit to Change) will therefore undertake the following analysis of each user experience:
- Total time spent using the online tool
- Number of logins/sessions
- Percentage of the programme viewed
- Number of reviews; number of times user reviews are submitted
- Journal entries and length: number of times a user enters information about mood/behaviour and amount of text they provide
- Time spent per session: length of time spent on the tool each time the user logs in.
- Tools per session: which elements of the online tool have been engaged with each time the user logs on.
- Times a tool was used.
- Messages sent: number and type of messages sent from health coach
- Use of the technology (weighing in or syncing activity tracker): number of times user transmitted weight and activity data
- Educational articles read: number and type of articles read
- Goal set (free text) e.g. no junk food for 5 days, only smoke 2 cigarettes a day
- Referee nominated to help user track goals? Yes/No
- No. of supporters the user nominates who are also emailed about progress in meeting goals (peer pressure)
- Financial pledge made? Yes/No
- Goal achieved: Yes/No. Collected automatically on a weekly basis
Some of the above will be collected for each of the three online tools. This activity data will be collated against the URN for each user to ensure identity is protected. Each online tool provider (SilverCloud, Second Nature and Commit to Change) will send the respective activity data by password protected email to the evaluation partner, the University of Surrey.
Qualitative Data Sampling
The user online registration process at www.beatdiabetes.org.uk will invite the user to take part in an interview with the University of Surrey. This is optional and the user can decline this invite and this will not negatively impact on their ability to take part in the programme in any way. The interview will seek to establish an exploration into the user experience of taking part in the BEAT Diabetes service. Because this involves a face to face or telephone interviews, the user’s identify cannot be kept from the evaluating team (University of Surrey). This part of the evaluation will required expressed written consent to take part which the University of Surrey will coordinate. If the user agrees to take part in these interviews, their email contact and phone number will be made available to the University of Surrey so that they may make contact.
Destruction of Data
All clinical data is required to be held for a period of 7 years before it can be destroyed. Anything therefore collected from the user which falls within this remit (blood pressure, weight, height, blood results) will be kept for this length of time. This data will be kept secure and when this period of retention expires, the records will be destroyed by standard NHS data disposal processes.
Any data that is not clinical such as user activity data (described above) and questionnaire data will be securely destroyed as per stand NHS data disposal processes at the end of this BEAT Diabetes Service (approximately 18months from the start of the BEAT Diabetes programme).
Should you have any questions about any of the above, please contact the BEAT Diabetes team at the following address or email contact.
BEATdiabetes test bed
North East Hampshire and Farnham CCG
Aldershot Centre for Health