Data security and protection
What personal data is collected in a RAAB7 survey?
During the survey, limited personal data (participant name and optional GPS location of examinations) is collected from participants and temporarily stored (for the duration of data collection only) on the Amazon Web Services (AWS) Cloud. This is done for the sole purpose of survey support.
Why is personal data collected in RAAB7?
Limited participant personal data is collected and temporarily stored for the sole purpose of survey support, which includes tracking data collection and “mop up”. Mop-up is a feature to provide the survey team with a list of participants who have either had incomplete assessments or who were not available at the initial visit to the household. The data is stored for the duration of data collection only.
Is data anonymised?
When data collection is completed, the RAAB user ‘closes’ the survey, at which point the dataset is locked and permanently anonymised.
Where is data stored?
During data collection, data is transmitted via a secure encrypted connection to a Peek-managed secure cloud-based Amazon Web Services (AWS) server (located in Germany or India only). AWS Cloud is one of the most secure cloud computing environments available today. RAAB7 data is only stored on the AWS Cloud for the duration of survey data collection. Find out more about RAAB7 data security and protection.
Once data collection for a RAAB7 survey is complete, the dataset is locked and permanently anonymised. This anonymised dataset and survey reports are transferred to a secure server managed by the London School of Hygiene & Tropical Medicine (LSHTM). LSHTM’s International Centre for Eye Health stores this permanent anonymised backup of the data for safe-keeping only.
How is RAAB7 data protected?
Robust data security and data protection are an integral part of RAAB7’s design. Survey data is processed in line with the most stringent data protection regulations.
The RAAB7 software is secure and we follow global best practice in data security to ensure data is kept safe at all times. Find out more about our security processes.
Is there an alternative to using a cloud server located outside of the survey country?
All RAAB7 surveys include temporary data storage on an Amazon Web Services cloud-based server, based in Germany or India only. It is not possible to host data locally within the survey country. Amazon Web Services (AWS) Cloud is one of the most secure cloud computing environments available today. The AWS Cloud is built to satisfy the security requirements of healthcare providers, global banks and other high-sensitivity organisations. Find out more about AWS Cloud security and other data security and protection measures in RAAB7 (pdf).
Once the survey is completed and data is anonymised, it is transferred to the London School of Hygiene & Tropical Medicine’s secure RAAB Repository website, hosted on LSHTM’s server located in the UK.
How does RAAB7 comply with data protection legislation?
All personal data in RAAB7 is processed and stored in line with the EU and UK's General Data Protection Regulation (GDPR). The GDPR has set the tone for data protection internationally, creating a new global standard to which many countries are aligning. This means that the way RAAB7 survey data is managed, processed and safeguarded is in compliance with the guiding principles of data protection regulations across the globe. The RAAB7 Data Sharing Agreement provides RAAB7 partners with legal assurance that data will be processed in compliance with data protection regulations.
Who controls how RAAB7 data is used?
Under the EU and UK's General Data Protection Regulation (GDPR), RAAB partners are considered a ‘Data Controller’, meaning that they are a custodian of any personal data collected and will seek informed consent from participants to be able to use their data. If participants do not consent to their data being used, they are excluded from data collection.
Peek and the London School of Hygiene & Tropical Medicine (LSHTM) are also considered Data Controllers (due to their roles in designing the RAAB7 methodology and software and determining the means of processing the data).
These roles are clearly set out in the RAAB7 Data Sharing Agreement. Neither the RAAB partner, Peek nor LSHTM have the right to distribute any identifiable personal data under any circumstance, unless as agreed in the RAAB7 Data Sharing Agreement.
The RAAB partner decides what level of data to make available on the RAAB Repository website once the survey is completed.
What are the benefits of making my survey data available via the RAAB repository?
All survey metadata (survey location, year of completion, Principal Investigator, RAAB Trainer, optional modules used, sample size, response rate) is made available on the RAAB repository website. Many Principal Investigators (PIs) also choose to give permission to make further survey outputs (such as the full anonymised dataset and/or survey reports) available on the site after an 18 month embargo period. In doing so, they contribute to future global eye health estimates and provide a wealth of valuable information for secondary analysis to support the sector.
RAAB data significantly contribute to the vision loss estimates calculated by the Vision Loss Expert Group for the Global Burden of Diseases (GBD) Studies that populate the IAPB Vision Atlas. In recent GBD studies, RAABs accounted for 61% of the data sources on causes of blindness and vision impairment and 46% of the data sources on trends in prevalence of blindness and vision impairment.
PIs who provide open access data on the RAAB repository website are invited to join an International RAAB Co-Authorship Group.