Introduction

The purpose of this document is to provide a concise policy statement regarding the Data Protection obligations of Epilepsy Alliance Europe [EAE]. This includes obligations in dealing with personal data, in order to ensure that the organisation complies with the requirements of the relevant EU legislation, namely the General Data Protection Regulation (GDPR) (EU) 2016/679.

Rationale

EAE must comply with the Data Protection principles set out in the relevant legislation. This Policy applies to all Personal Data collected, processed and stored by EAE in relation to its staff, service providers, members and clients in the course of its activities. All are treated equally under this Policy.

Scope

The policy covers both personal and sensitive personal data held in relation to data subjects by EAE. The policy applies equally to personal data held in manual and automated form.

All Personal and Sensitive Personal Data will be treated with equal care by EAE. Both categories will be equally referred-to as Personal Data in this policy, unless specifically stated otherwise.

This policy should be read in conjunction with the associated Subject Access Request procedure, the Data Retention and Destruction Policy, the Data Retention Periods List and the Data Loss Notification procedure.

EAE as a Data Controller

In the course of its daily organisational activities, EAE acquires, processes and stores personal data in relation to:

• Employees/Contractors of EAE
• Members of EAE
• Sponsors/Partners of EAE
• Third party service providers engaged by EAE

In accordance with EU Data Protection legislation, this data must be acquired and managed fairly. Not all staff members will be expected to be experts in Data Protection legislation. However, EAE is committed to ensuring that its staff have sufficient awareness of the legislation in order to be able to anticipate and identify a Data Protection issue, should one arise. In such circumstances, staff must ensure that the Data Protection Officer is informed, and in order that appropriate corrective action is taken.

Subject Access Requests

Any formal, written request by a Data Subject for a copy of their personal data (a Subject Access Request) will be referred, as soon as possible, to the Data Protection Officer, and will be processed as soon as possible.

It is intended that by complying with these guidelines, EAE will adhere to best practice regarding the applicable Data Protection legislation.

Third-Party processors

In the course of its role as Data Controller, EAE engages a number of Data Processors to process Personal Data on its behalf. In each case, a formal, written contract is in place with the Processor, outlining their obligations in relation to the Personal Data, the specific purpose or purposes for which they are engaged, and the understanding that they will process the data in compliance with EU General Data Protection Regulation.

These Data Processors include:

• MailChimp
• Survey Monkey
• Google – GSuite
• Dropbox

The Data Protection Principles

The following key principles are enshrined in the GDPR legislation and are fundamental to the EAE’s Data Protection policy.

In its capacity as Data Controller, EAE ensures that all data shall:

1. … be obtained and processed fairly and lawfully.

For data to be obtained fairly, the data subject will, at the time the data are being collected, be made aware of:

• The identity of the Data Controller (EAE)
• The purpose(s) for which the data is being collected
• The person(s) to whom the data may be disclosed by the Data Controller
• Any other information that is necessary so that the processing may be fair.

EAE will meet this obligation in the following way.

• Where possible, the informed consent of the Data Subject will be sought before their data is processed;
• Where it is not possible to seek consent, EAE will ensure that collection of the data is justified under one of the other lawful processing conditions – legal obligation, contractual necessity, etc.;
• Where EAE intends to record activity on video, a Fair Processing Notice will be posted in full view;
• Processing of the personal data will be carried out only as part of EAE’s lawful activities, and EAE will safeguard the rights and freedoms of the Data Subject;
• The Data Subject’s data will not be disclosed to a third party other than to a party contracted to EAE and operating on its behalf.

2. …. be obtained only for one or more specified, legitimate purposes.

EAE will obtain data for purposes which are specific, lawful and clearly stated. A Data Subject will have the right to question the purpose(s) for which EAE holds their data, and EAE will be able to clearly state that purpose or purposes.

3. ….. not be further processed in a manner incompatible with the specified purpose(s).

Any use of the data by EAE will be compatible with the purposes for which the data was acquired.

4. …. be kept safe and secure.

EAE will employ high standards of security in order to protect the personal data under its care. Appropriate security measures will be taken to protect against unauthorised access to, or alteration, destruction or disclosure of any personal data held by EAE in its capacity as Data Controller.

Access to and management of staff and customer records is limited to those staff members who have appropriate authorisation and password access.

5. … be kept accurate, complete and up-to-date where necessary.

EAE will:

• ensure that administrative and IT validation processes are in place to conduct regular assessments of data accuracy;
• conduct periodic reviews and audits to ensure that relevant data is kept accurate and up-to-date. EAE conducts a review of sample data every six months to ensure accuracy; Staff contact details and details on next-of-kin are reviewed and updated every two years.
• conduct regular assessments in order to establish the need to keep certain Personal Data.

6. … be adequate, relevant and not excessive in relation to the purpose(s) for which the data were collected and processed.

EAE will ensure that the data it processes in relation to Data Subjects are relevant to the purposes for which those data are collected. Data which are not relevant to such processing will not be acquired or maintained.

7. … not be kept for longer than is necessary to satisfy the specified purpose(s).

EAE has identified an extensive matrix of data categories, with reference to the appropriate data retention period for each category. The matrix applies to data in both a manual and automated format.

Once the respective retention period has elapsed, EAE undertakes to destroy, erase or otherwise put this data beyond use.

8. … be managed and stored in such a manner that, in the event a Data Subject submits a valid Subject Access Request seeking a copy of their Personal Data, this data can be readily retrieved and provided to them.

EAE has implemented a Subject Access Request procedure by which to manage such requests in an efficient and timely manner, within the timelines stipulated in the legislation.

Data Subject Access Requests

As part of the day-to-day operation of the organisation, EAE’s staff engage in active and regular exchanges of information with Data Subjects. Where a formal request is submitted by a Data Subject in relation to the data held by EAE, such a request gives rise to access rights in favour of the Data Subject.

There are specific time-lines within which EAE must respond to the Data Subject, depending on the nature and extent of the request. These are outlined in the Subject Access Request procedure.

EAE’s staff will ensure that, where necessary, such requests are forwarded to the Data Protection Officer in a timely manner, and they are processed as quickly and efficiently as possible, but within not more than 40 days from receipt of the request.

Implementation

As a Data Controller, EAE ensures that any entity which processes Personal Data on its behalf (a Data Processor) does so in a manner compliant with the Data Protection legislation.

Failure of a Data Processor to manage EAE’s data in a compliant manner will be viewed as a breach of contract, and may be pursued through the courts.

Failure of EAE’s staff to process Personal Data in compliance with this policy may result in disciplinary proceedings.

Data Retention and Destruction Policy

• Personal information (e.g. about a Staff member) processed/kept for any purpose should not be kept longer than is necessary for that purpose.
• This gives some flexibility and EAE occasionally needs to make a professional judgement about how long is “necessary”. It is advisable for staff within EAE to follow the following guidelines included in the Records Retention Schedule on retention of notes, records etc.
• Purging of data occurs on an annual basis, and as once-offs on completion of purpose, e.g. completion of a project. All records will be destroyed in accordance with Data Protection law and EAE’s guidelines for retention and destruction as follows:
  1. All records involved in any investigation, litigation, or audit will not be destroyed until legal counsel has confirmed that no further legal reason exists for retention of the record.
  2. In the event a legal proceeding is initiated against EAE, the Executive Director will be notified immediately to stop the destruction of files.
  3. All records will be destroyed in a manner that eliminates the possibility of reconstruction of the information.
  4. Paper records will be destroyed by shredding.
  5. Any CD-RW disks that contain document imaging that cannot be overwritten will be destroyed through pulverization.
  6. Any contracted services for the destruction of EAE’s records will be provided according to the following contractual guidelines:
     • The method of destruction will be specified.
     • The time between the acquisition and destruction of the records will be specified.
     • Established safeguards to protect the confidentiality of the records will be described and noted.
     • The contractor will provide proof of destruction.

Data Retention Periods List

Data Loss Notification Procedure

A breach is a loss of control, compromise, unauthorized disclosure, unauthorized acquisition, unauthorized access, or any similar term referring to situations where persons other than authorized users, for an authorized purpose, have access or potential access to personal data in usable form, whether manual or automated.

This could mean:

• Loss of a laptop, memory stick or mobile device that contains personal data
• Lack of a secure password on pc’s and applications
• Emailing a list of event participants to someone in error
• Giving a website login to an unauthorised person

What happens if a breach occurs?

Actual, suspected, or potential breaches should be reported immediately to the EAE Communications Officer.

The Communications Officer will work with the Executive Director to assess the breach and determine its severity. Depending on the scale and sensitivity of data lost and the number of Data Subjects impacted, the Office of the Data Protection Commissioner and relevant regulatory bodies will be informed as quickly as possible following detection.

In certain circumstances EAE may (e.g. if required by the Office of the Data Protection Commissioner), inform the data subjects of the loss of their data and provide them with an assessment of the risk to their privacy. EAE will make recommendations to the data subjects which may minimise the risks to them. EAE will then implement changes to procedures, technologies or applications to prevent a recurrence of the breach.

When will the Office of the Data Protection Commissioner be informed?

All incidents in which personal data has been put at risk will be reported to the Office of the Data Protection Commissioner. The only exceptions to this policy are when the data subjects have already been informed, where the loss affects fewer than 100 data subjects, and where the loss involves only non-sensitive, non-financial personal data.

Where devices or equipment containing personal or sensitive personal data are lost or stolen, the Data Protection Commissioner is notified only where the data on such devices is not encrypted.

Data Loss Incident logging

All data breaches will be recorded in an incident log as required by the Office of the Data Protection Commissioner. The log will maintain a summary record of each incident which has given rise to a risk of unauthorised disclosure, loss, destruction or alteration of personal data. The record will include a brief description of the nature of the incident and an explanation of why the Office of the Data Protection Commissioner was not informed. Such records will be provided to the Office of the Data Protection Commissioner upon request.