data protection policy

Introduction

The HIV Resistance Response Database Initiative (RDI) regards the lawful and correct treatment of personal information as very important. We will ensure that we treat personal information lawfully and correctly. To this end we fully endorse and adhere to the principles of the General Data Protection Regulation (GDPR).

This policy applies to the processing of personal data in manual and electronic records kept by us in connection with our human resources function, our research and our collaborations with others in the medical research field.

Definitions

“Personal data” is information that relates to an identifiable person who can be directly or indirectly identified from that information, for example, a person’s name, identification number, location, online identifier. It can also include pseudonymised data.

“Special categories of personal data” is data which relates to an identifiable individual’s health, sex life, sexual orientation, race, ethnic origin, political opinion, religion, and trade union membership. It also includes genetic and biometric data (where used for ID purposes).

“Data processing” is any operation or set of operations which is performed on personal data or on sets of personal data, whether or not by automated means, such as collection, recording, organisation, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.

Data protection principles

Under GDPR, all personal data obtained and held by us must be processed according to a set of core principles. In accordance with these principles, we will ensure that:

processing will be fair, lawful and transparent
data be collected for specific, explicit, and legitimate purposes
data collected will be adequate, relevant and limited to what is necessary for the purposes of processing
data will be kept accurate and up to date. Data which is found to be inaccurate will be rectified or erased without delay
data is not kept for longer than is necessary for its given purpose
data will be processed in a manner that ensures appropriate security of personal data including protection against unauthorised or unlawful processing, accidental loss, destruction or damage by using appropriate technical or organisation measures
we will comply with the relevant GDPR procedures for international transferring of personal data

Types of data held and the lawful basis for processing

We acknowledge that processing may be only be carried out where a lawful basis for that processing exists and we have assigned a lawful basis against each processing activity.

Employee

personal details such as name, address, phone numbers
CV
details relating to pay administration such as National Insurance numbers, bank account details and tax codes
medical or health information
information relating to your employment with us, including:

job title and job descriptions
your salary
your wider terms and conditions of employment
details of formal and informal proceedings involving you such as letters of concern, disciplinary and grievance proceedings, your annual leave records, appraisal and performance information
internal and external training modules undertaken

All of the above information is required for the fulfilment of our employment contracts. More information on those processing activities are included in our privacy notice for employees, which is available from your manager.

Consultants

We hold the following data for the fulfilment of our contract with them:

personal details such as name, address, phone numbers
CV
bank account details
Details of the services provided and charges to RDI

Healthcare and research professionals

We hold the following information on healthcare and research professionals in the HIV/AIDS field:

Data held:

Name
Professional title
Institute(s) at which they work and its address
Email address
Phone number

because of one of more of the following legitimate interests:

They use our online HIV Treatment Prediction System (HIV-TRePS) and we need to communicate with them about changes to the service
They contribute data to our research initiative and we need to communicate with them about the nature of those data
They have signed-up to receive email updates on our research and services (recipients are able to opt out at any point)
We have been passed their email address from another professional in the field who has recommended we contact them to discuss potential scientific collaboration

Note on anonymised HIV treatment data

The RDI receives data relating to hundreds of thousands of HIV patients from hospitals, research centres, cohorts and clinical trials all over the world. The data are stripped of all identifiers, completely anonymous and are therefore not considered personal data.

The RDI uses these data in order to develop computational models to predict how patients will respond to any combination of HIV drugs. These models are available as a free treatment support tool via the RDI web site. The data consist of some or all of the following for each patient:

Patient sex (optional)
Patient year of birth (optional)
Measurements of the amount of HIV in the blood stream (viral load) and the dates of those measurements (essential)
Measurements of the number of a certain type of white blood cell targeted by HIV that are circulating in the blood (CD4 count) and the dates of those measurements (optional)
A section of the HIV genetic code that patient that affects drug susceptibility from the virus in the patient, plus the date of the test (optional)
The HIV drugs used to treat the patient and the start and stop dates of those drugs (essential)
The name of the source institution (essential)

The institutions providing these data have the right to withdraw their data at any point.

Access to data

Employees, consultants, collaborators and other professionals in the HIV field all have a right to access any personal data that we hold on them. To exercise this right, they should make a Subject Access Request. We will comply with the request without delay, and within one month unless, in accordance with legislation, we decide that an extension is required. Those who make a request will be kept fully informed of any decision to extend the time limit.

Data disclosures

The Company may be required to disclose certain data/information on employees to any person. The circumstances leading to such disclosures include:

any employee benefits operated by third parties;
disabled individuals - whether any reasonable adjustments are required to assist them at work;
individuals’ health data - to comply with health and safety or occupational health obligations towards the employee;
for Statutory Sick Pay purposes;
HR management and administration - to consider how an individual’s health affects his or her ability to do their job;
the smooth operation of any employee insurance policies or pension plans;
to assist law enforcement or a relevant authority to prevent or detect crime or prosecute offenders or to assess or collect any tax or duty.

These kinds of disclosures will only be made when strictly necessary for the purpose.

Data security

All our employees are aware that hard copy personal information should be kept in a locked filing cabinet, drawer, or safe. Employees are aware of their roles and responsibilities when processing data. All employees are instructed to store files or written information of a confidential nature in a secure manner so that are only accessed by people who have a need and a right to access them and to ensure that screen locks are implemented on all PCs, laptops etc when unattended. No files or written information of a confidential nature are to be left where they can be read by unauthorised people.

Where data is computerised, it should be coded, encrypted or password protected both on a local hard drive and on a network drive that is regularly backed up. If a copy is kept on removable storage media, those media must be kept in a locked filing cabinet, drawer, or safe.

Employees must always use the passwords provided to access the computer system and not abuse them by passing them on to people who should not have them.

Personal data relating to employees should not be kept or transported on laptops, USB sticks, or similar devices, unless prior authorisation has been received. Where personal data is recorded on any such device it should be protected by:

ensuring that data is recorded on such devices only where absolutely necessary.
using an encrypted system — a folder should be created to store the files that need extra protection and all files created or moved to this folder should be automatically encrypted.
ensuring that laptops or USB drives are not left where they can be stolen.

Failure to follow the Company’s rules on data security may be dealt with via the Company’s disciplinary procedure. Appropriate sanctions include dismissal with or without notice dependent on the severity of the failure.

Third party processing

Where we engage third parties to process data on our behalf, we will ensure, via a data processing agreement with the third party, that the third party takes such measures in order to maintain the Company’s commitment to protecting data.

International Data Transfers

The Company does not transfer personal data to any recipients outside of the EEA.

Requirement to notify breaches

All data breaches will be recorded on our Data Breach Register. Where legally required, we will report a breach to the Information Commissioner within 72 hours of discovery. In addition, where legally required, we will inform the individual whose data was subject to breach.

Training

New employees must read and understand the policies on data protection as part of their induction.

All employees receive training covering basic information about confidentiality, data protection and the actions to take upon identifying a potential data breach. The nominated data controller for the Company is trained appropriately in their role under the GDPR.

All employees who need to use the computer system are trained to protect individuals’ private data, to ensure data security, and to understand the consequences to them as individuals and the Company of any potential lapses and breaches of the Company’s policies and procedures.

Records

The Company keeps records of its processing activities including the purpose for the processing and retention periods in its Data Protection Record. These records will be kept up to date so that they reflect current processing activities.

Data Protection Compliance

Our appointed compliance officer is:

Andrew Revell
andrewrevell@hivrdi.org
+44 20 226 7314