ACTIVATE App Privacy Notice

This Privacy Notice explains how personal information collected through the ACTIVATE mobile application is processed as part of the ACTIVATE research study.

The ACTIVATE study is sponsored by Milton Keynes University Hospital NHS Foundation Trust (MKUH) and delivered in collaboration with Loughborough University and Milton Keynes City Council.

Participation in the study is voluntary. This Privacy Notice should be read alongside the Participant Information Sheet and Consent Form provided when you joined the study.

Who is responsible for your information?

Milton Keynes University Hospital NHS Foundation Trust (MKUH) is the Sponsor of the ACTIVATE research study and is the data controller for the personal information processed for the purposes of the study, including data processed through the ACTIVATE app.

MKUH is responsible for ensuring that your personal information is collected, stored and used appropriately for the purposes of the research study.

Milton Keynes City Council owns and supports the ACTIVATE app/programme infrastructure as part of the Milton Keynes Activity Rewards Programme. Milton Keynes City Council will not have access to your personal information processed for the purposes of the study, including data processed through the app.

Loughborough University processes personal information on behalf of the study as part of the approved research and in accordance with applicable data protection legislation, research governance requirements and ethical approvals.

Cuttlefish Multimedia Ltd provides technical hosting, operation and support for the ACTIVATE app and will process app data only for the agreed ACTIVATE study purposes.

If you have any questions about how your personal information is handled by the study Sponsor, please contact:

Sponsor Research and Innovation Office
Milton Keynes University Hospital NHS Foundation Trust
Email: [email protected]

Data Protection Officer
Milton Keynes University Hospital NHS Foundation Trust
Email: [email protected]

What information do we collect?

The ACTIVATE app processes information required to deliver the study intervention and conduct the research.

Depending on your participation, this may include:

Personal information

The ACTIVATE app may process the following personal information where this is required to create your app account, confirm your participation in the study, provide access to the intervention, and support the delivery of the ACTIVATE research study

First name
Last name
Email address
Unique study participant number

These details are securely preloaded into the ACTIVATE app by the research team to validate your participation and provide access to the intervention.

As part of the wider ACTIVATE research study, additional personal information may also be collected, including:

Date of birth
Gender
Home address
Ethnicity
Marital status
Employment status
Household income
Healthcare professional contact details

These data are collected as part of the research study and are not all stored within the ACTIVATE app.

Activity and health data

If you choose to connect your Google account or compatible wearable device, the ACTIVATE app will request permission to access physical activity data.

This may include:

Daily step count
Physical activity duration
Activity intensity
Heart rate
Other physical activity measures required for the study (including floor, elevation, distance and time in heart rate zones)

The app only accesses the information that you explicitly authorise through Google's secure authorisation process.

Why do we collect this information?

We use your information to:

administer your participation in the ACTIVATE study
provide access to the ACTIVATE app and study intervention
monitor physical activity throughout the study
evaluate the effectiveness of the ACTIVATE intervention
understand physical activity patterns in people living with type 2 diabetes
communicate with you about your participation in the study
ensure the secure operation and maintenance of the ACTIVATE app.

Your information is used solely for the purposes of the ACTIVATE research study.

The ACTIVATE app does not use your personal information or Google Health data or app-use data for advertising, marketing or commercial profiling.

NHS data

As part of the wider ACTIVATE research study, the study team may also collect relevant information from NHS records, as described in the Participant Information Sheet and Consent Form.

This may include:

healthcare use
prescribed diabetes medication
diabetes-related blood test results
body weight
other study outcome data required for the research

This information is collected under the consent you provide when joining the study and is separate from the activity and app-use data processed through the ACTIVATE app or connected wearable device.

Who has access to my information?

Access to identifiable personal information is limited to authorised individuals and organisations who need access for the purposes of administering the study, delivering the intervention, providing technical support, maintaining the app, or undertaking approved research activities.

Your identifiable information may be processed by:

Milton Keynes University Hospital NHS Foundation Trust
Loughborough University

Research findings may be published in scientific journals or presented at conferences. Individual participants will never be identified in any publications or reports.

We do not sell your personal information.

We do not share your Google Health data with third parties for advertising or commercial purposes.

Where is my information stored?

The ACTIVATE app securely collects and transfers data using end-to-end encryption.

Study data are stored within an encrypted database hosted in an Google Cloud Platform (GCP) cloud environment located within the United Kingdom.

Appropriate technical and organisational measures are in place to protect your personal information against unauthorised access, loss or misuse.

Legal basis for processing

Personal information collected during the ACTIVATE study is processed for scientific research carried out in the public interest.

Special category personal data are processed in accordance with UK data protection legislation and appropriate safeguards approved through research ethics review.

How long is my information kept?

Your contact details will be retained until the end of the study so that the research team can communicate with you during the study and provide information about the study results.

Personal data collected during the study will be anonymised where appropriate and retained in accordance with the research governance policies of Milton Keynes University Hospital NHS Foundation Trust.

Anonymised research data will be retained for at least 10 years following completion of the study in accordance with the policies of Milton Keynes University Hospital NHS Foundation Trust and Loughborough University.

Your choices

Participation in ACTIVATE is voluntary.

You may withdraw from the study at any time without giving a reason.

If you withdraw from the study, information already collected may continue to be used where necessary to preserve the integrity and reliability of the research. If you do not wish researchers to continue collecting information from your NHS records after withdrawal, please inform the study team.

If you have connected your Google account, you may revoke the ACTIVATE app's access to your Google Health data at any time through your Google Account permissions.

You have rights under data protection law, including the right to request access to your personal data, to ask for inaccurate personal data to be corrected, and to ask for processing to be restricted in certain circumstances. Some rights may be limited where applying them would prevent or seriously impair the research, or where data need to be retained to preserve the reliability and integrity of the study.

Requests about your data should be sent to the ACTIVATE research team or the MKUH Data Protection Officer.

Questions, support, concerns and complaints

If you need technical support with the ACTIVATE app, wearable device, or reward functionality, please contact the Loughborough University ACTIVATE support team.

Loughborough University ACTIVATE Support Team
Email: [email protected]

If you have a question or concern about your participation in the ACTIVATE study, study appointments, study questionnaires, withdrawal from the study, or anything that happens during the study, please contact the ACTIVATE research team.

ACTIVATE Research Team
Email: [email protected]

If your question is about how your personal information is handled for the ACTIVATE study, please contact the Sponsor’s Research & Innovation office in the first instance. You can also contact the MKUH Data Protection Officer.

MKUH Research & Innovation Department
Email: [email protected]

Data Protection Officer
Milton Keynes University Hospital NHS Foundation Trust
Email: [email protected]

The ACTIVATE Participant Information Sheet further explains how to raise a concern or complaint about the wider study, including NHS complaints routes.

You also have the right to raise a concern about the handling of your personal information with the Information Commissioner’s Office, which is the UK regulator for data protection.

Further information

This Privacy Notice explains how information is used in connection with the ACTIVATE app.

Further information about the wider ACTIVATE study is provided in the ACTIVATE Participant Information Sheet and Consent Form. These documents explain the wider study procedures and data collection outside the ACTIVATE app, including NHS record data, study questionnaires, Part 1 diabetes check data, Axivity wrist monitor data, qualitative interviews, withdrawal, complaints and compensation.

Further information about how patient information is used in health and care research is also available from the Health Research Authority at http://www.hra.nhs.uk/patientdataandresearch.

Complaints

If you have any questions or concerns about the study, please contact the ACTIVATE research team.

If you remain unhappy and wish to make a formal complaint, you can contact the Patient Advice and Liaison Service (PALS) at Milton Keynes University Hospital NHS Foundation Trust.

Email: [email protected]

Telephone: 01908 660033

Contact us

ACTIVATE Research Team

Email: [email protected]

Further information

For further information about how patient information is used in health and care research, please visit the Health Research Authority website.

If you have any questions about how your personal information is handled by the study sponsor, please contact: