Overview of the My MPN Voice App – with Study and without Study
GSTT Study | Stages
The First stage | A small cohort of patients will receive access to the app and be sent a wearable device. They will input their daily health data which are referred to as ‘patient reported outcomes’ and wear the watch, the data will be used in the study.
The Second stage | A larger cohort of patients will receive access to the app where they will input their patient reported outcomes (PROs), this data will be used in the wider study. These patients will not require wearables.
The Third stage | A light version of the app will become available to patients in the UK. No data will be collected from this cohort or patients.
The Fourth stage | The light version of the app will be available to patient globally.
Sanius Health Privacy Policy
All information you provide and any data that is collected over the course of the study will be kept strictly confidential.
There will be strong data encryption and protection within a cloud foundation with internet security from Microsoft Azure.
This data will be protected under the Data Protection Act and under General Data Protection Regulation (GDPR) rules.
You hold the right to withdraw your personal data from the study, even after you have provided informed consent to participate.
Any personally identifiable data will be accessible only by you, your clinician (should you choose to share this information with them), and Sanius Health’s Data Controller.
Only the Data Controller will have access to patient identifiable data, for the purposes of building this into the digital data platform, and to create anonymised extracts.
Only the Data Controller and Chief Investigator, Dr Patrick Harrington, (as well as Guy’s & St Thomas’ NHS Foundation Trust, as study sponsor) will have access to patient identifiable data from this study. The data controller will build patient identifiable data into the digital data platform and create anonymised extracts
Anonymised, non-identifiable data extracts will also be available to the research team, led by Dr Patrick Harrington and Professor Claire Harrison. It will be analysed for better insights about MPNs. This will be used both for scientific publication in peer-reviewed journals and for a patient-friendly summary of the study findings.
How is data storage and transfer kept secure?
The study uses electronic questionnaires hosted on Sanius Health’s platform. They will process your data on behalf of Guy’s and St Thomas’ NHS Foundation Trust.
As joint Data Controllers, Sanius Health ensures to operate under strict security certifications and compliances. The team continuously strives to work with and adopt new technology, and protection of the sensitive data processed is important. As such, Sanius Health is compliant with the following:
- ICO
- ISO 27001
- Cyber Essentials
- Data Security and Protection Toolkit
- Cyber Security Centre Web Checker
Sanius Health’s process ensures strong levels of patient de-identification across the entire platform and Sanius programme as a means of protecting your identity. As part of the process, Sanius takes steps to ensure compliance with all penetration testing protocols and standards to ensure the protection of you and your data.
No patient identifiable data is transferred outside of the UK. Only aggregated (de-identified or combined from patient-level information into a grouped overview across the study’s patients) research data is managed on other servers.
Data is transferred with protection from full encryption to Sanius’ secure cloud database, cyber security provided by Microsoft Azure through its highly secure cloud foundation. This uses multi-layered, built-in security controls and real-time global cybersecurity intelligence to detect and respond to threats as soon as they arise.
