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Data Protection Impact Assessment for the National Neonatal Audit Programme 1

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Page 1: 20…  · Web viewThis Data Protection Impact Assessment (DPIA) template and guide is a tool which can help organisations identify the most effective way to comply with their data

Data Protection Impact Assessment for the National Neonatal Audit Programme

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Document control:

Name and role Contact detailsDocument Completed by Jessica Ellis, NNAP Project

[email protected] 3861 1910

Data Protection Officer name Adele Picken, Information Governance Manager

[email protected] 7092 6038

Document approved by (this should not be the same person that completes the form).

Adele Picken, Information Governance Manager

[email protected] 7092 6038

Organisation’s ICO registration number can be found at https://ico.org.uk/esdwebpages/search

Z5143673

Date Completed Version Summary of changes

27/04/2018 0.1 Information Governance Manager comments on

initial draft30/04/2018 0.2 Updated by Rachel Winch

following comments IG Manager.

30/04/2018 1.0 Final and approved05/07/2018 1.1 Corporate Risks added and

individual’s rights section updated to reflect final

wording of parent information leaflet.

06/09/2019 1.2 Individual’s rights section updated following review of parent information leaflet.

Updated risk logs.06/02/2020 1.3

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Contents

Screening questions........................................................................................................................................................4

Data Protection Impact Assessment...............................................................................................................................5

Purpose and benefits of completing a DPIA................................................................................................................5

Supplementary guidance.............................................................................................................................................5

DPIA methodology and project information...............................................................................................................6

DPIA Consultation.......................................................................................................................................................6

Publishing your DPIA report........................................................................................................................................7

Data Information Flows...............................................................................................................................................8

Transferring personal data outside the European Economic Area (EEA).........................................................................9

Privacy Risk Register........................................................................................................................................................9

Justification for collecting personal data.........................................................................................................................9

Data quality standards for personal data..................................................................................................................11

Individual’s rights..........................................................................................................................................................12

Privacy Risks..............................................................................................................................................................18

Types of Privacy risks.................................................................................................................................................18

Risks affecting individuals..........................................................................................................................................18

Corporate and compliance risks................................................................................................................................18

Managing Privacy and Related risks..........................................................................................................................19

Privacy Risks and Actions Table.................................................................................................................................20

Regularly reviewing the DPIA........................................................................................................................................35

Appendix 1 Submitting your own version of DPIA.........................................................................................................36

Appendix 2 Guidance for completing the table.............................................................................................................38

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Screening questionsPlease complete the following checklist:

Section Yes or No

N/A Comments

1. Does your project involve any automated decision making, evaluation or scoring including profiling and predicting using information about a person? Does the outcome from your project decide who gets access to services?

N

2 Does your project involve any sensitive information or information of a highly personal nature?

Y

3. Does the proposal involve any data concerning vulnerable individuals who may be unable to easily consent or oppose the processing, or exercise their rights?

This group may include children, employees, mentally ill persons, asylum seekers, or the elderly, patients and cases where there is an imbalance in the relationship between the position of the individual and the controller.

Y

4. Does your project involve any innovative use or applying new technological or organisational solutions? This could include biometric or genetic data, the tracking of individuals’ location or behaviour?

N

5. Does your project match data or combine datasets from different sources?

N

6. Does your project collect personal data from a source other than the individual without providing them with a privacy notice (‘invisible processing’)?

N

7. Does your project process data that might endanger the individual’s physical health or safety in the event of a security breach?

N

8. Is this a new project? Or have the requirements for your project changed since its initiation? Are you sharing new information or linking to new datasets that were not part of the original project specification. Have you added any new audit streams to your project?

N

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Data Protection Impact Assessment

This Data Protection Impact Assessment (DPIA) template and guide is a tool which can help organisations identify the most effective way to comply with their data protection obligations and meet individuals’ expectations of privacy. This tool will help organisations which process personal data to properly consider and address the privacy risk that this entails.

DPIA can be used alongside existing project management and risk management methodologies.

Conducting a DPIA is now a legal requirement under the GDPR (General Data Protection Regulation) which will start on the 25th May 2018 and the new UK Data Protection Act. By completing a DPIA, this will help to ensure that your project is compliant with GDPR and UK data protection legislation. This document will be updated if further ICO guidance is published or there is change in legislation

A DPIA is the basis of a “privacy by design” approach, to help meet privacy and data protection expectations of customers, employees and other stakeholders. A DPIA is intended to be prospective and proactive and should act as an early warning system by considering privacy and compliance risks in the initial design and throughout the project.

Purpose and benefits of completing a DPIA

A DPIA is a process which assists organisations in identifying and minimising the privacy risks of new projects or policies.

Conducting a DPIA involves working with people within the organisation, with partner organisations and with the people affected to identify and reduce privacy risks.

The DPIA will help determine the appropriate controls needed to protect personal data i.e. technical, procedural and physical.

The DPIA will help to ensure that potential problems are identified at an early stage, when addressing them will often be simpler and less costly.

Conducting a DPIA should benefit organisations by producing better policies and systems and improving the relationship between organisations and individuals.

The ICO may often ask an organisation whether they have carried out a DPIA. It is often the most effective way to demonstrate to the ICO how personal data processing complies with Data Protection legislation.

Supplementary guidance

Data Protection Impact Assessment under GDPR guidance ICO’s conducting privacy impact assessments code of practice The ICO’s Anonymisation: managing data protection risk code of practice may help organisations to identify

privacy risks associated with the use of anonymised personal data. The ICO’s Data sharing code of practice may help organisations to identify privacy risks associated with

sharing personal data with other organisations. The ICO’s codes of practice on privacy notices, as well as other more specific guidance, will also help an

organisation to focus DPIAs on those issues. The Government Data Programme has developed a Data Science Ethical Framework to help organisations

understand the benefits and risks of using personal data when developing policy. The Framework can be used as part of the process to help you describe information flows and identify privacy risks and solutions.

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DPIA methodology and project information.

At what stage in the project did you conduct this DPIA? E.g. planning stage, changes to the existing project, in retrospect.

Describe the overall aim of the project and the data processing you carry out

DPIA ConsultationWe advise you to consult with as many relevant people as possible (both internal and external stakeholders) while conducting this assessment, consultation is an important part of a DPIA and allows people to highlight privacy risks and solutions based on their own area of interest or expertise. Consultation can take place at any point in the DPIA process and may include the project management team, Data Protection Officer, designers, IT provider, procurement team, data processors, communications team, patients, stakeholders, corporate governance and compliance teams, researchers, analysts, statisticians and senior management.

Your must consult with the Data Protection Officer regarding the impacts on privacy. Please state below that you have.

If you decide against seeking the views of data subjects or their representatives e.g. this would be disproportionate or impracticable, then the justification must be made clear in the box below.

In the box below name the stakeholder group, date consulted and how consulted. Please insert another box if you consulted with many different stakeholder groups.

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Retrospectively

The NNAP assesses whether babies admitted to neonatal units in England, Scotland and Wales receive consistent high-quality care. We identify areas for quality improvement in relation to the delivery and outcomes of care.

Adele Picken, Data Protection Officer and Information Governance Manager, RCPCH (09 April 2018 and 27 April 2018)

NNAP Data Analyst, Neonatal Data Analysis Unit (26 April 2018)

NNAP Project Board were consulted on the content of the fair processing/privacy notice leaflet (March/April 2018). The NNAP Project Board includes representatives from the following:

NNAP Clinical lead (consultant neonatologist) Neonatal Nurses Association Neonatal trainees Parents Bliss charity Neonatal Data Analysis Unit British Association of Perinatal Medicine The Neonatal Society Scottish and Welsh consultant neonatologists

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Publishing your DPIA report Publishing a DPIA report is not a legal requirement but you should consider publishing this report (or a summary or a conclusion) and you should send it to your stakeholders. Publishing the DPIA report will improve transparency and accountability, and lets individuals know more about how your project affects them. Though there may be a need to redact/remove sensitive elements e.g. information on security measures.

State in the box below if you are going to publish your DPIA. If so, please provide hyperlink to the relevant webpage if this has been done already or insert the date you intend to publish it.

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We intend to publish the updated DPIA on the NNAP pages of the RCPCH website by 28 February2020.

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Data Information Flows Please describe how personal information is collected, stored, used and deleted. Use your data flow map and information asset register to help complete this section. Explain what personal information is used, what it is used for, who it is obtained from and disclosed to, who will have access and any other necessary information. Completing this section can help identify potential ‘function creep’, unforeseen or unintended uses of the data for example data sharing.

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Processing activity description

Type of data involved Data flow Controller/processor

Clinical data entered by neonatal units on BadgerNet system

Personal data (identifiable)

Neonatal unit to Clevermed Ltd.

Data controller: Neonatal units

Clinical data stored by Clevermed Ltd. On BadgerNet system

Personal data (identifiable)

None. Data processor: Clevermed Ltd Data controller: Neonatal units

Neonatal dataset (SCCI 1595) extracted by Clevermed Ltd.

Personal data (identifiable)

None. Data processor: Clevermed Ltd Data controller: NDAU

Neonatal dataset transferred to NDAU/NHS server at Chelsea and WestminsterHospital

Personal data (identifiable)

Clevermed Ltd to the Neonatal Data Analysis Unit

Data processor: NDAU Data controller: NDAU

NDAU send list of NHS numbers to NHSD

Personal data (identifiable)

Neonatal Data Analysis Unit to NHS Digital

Data processor: NDAU Data controller: NDAU

NHSD send list of NHS numbers to NDAU, removing any that have opted out under the national opt out

Personal data (identifiable)

NHS Digital to the Neonatal Data Analysis Unit

Data processor: NHSD Data controller: NDAU

Patient identifiable data removed and data cleaned.

Pseudonymised/ limited access deidentified

None. Data processor: NDAU Data controller: NDAU

National Neonatal Research Database (NNRD) created.

Pseudonymised/ limited access deidentified

None. Data processor: NDAU Data controller: NDAU

NNAP dataset created from the NNRD

Pseudonymised/ limited access deidentified

None. Data processor: NNAP Data subprocessor: NDAU Data controller: HQIP

Cleaned data is fed back to neonatal units on the NDAU’s UK Neonatal Collaborative web portal for checking. Data is amended on BadgerNet.

Badgernet Patient ID only (pseudonymised)

Neonatal Data Analysis Unit to neonatal units.

Re-extracted, cleaned data used to develop tables and statistical outputs NNAP reports.

Pseudonymised/ limited access deidentified becomes anonymised and aggregated data

Neonatal Data Analysis Unit to the NNAP at RCPCH

Data processor: NNAP Data subprocessor: NDAU Data controller: HQIP

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Transferring personal data outside the European Economic Area (EEA)

If personal data is being transferred outside of the EEA, describe how the data will be adequately protected (e.g. the recipient is in a country which is listed on the Information Commissioner’s list of “approved” countries, or how the data is adequately protected).

Privacy Risk Register

Justification for collecting personal data

Personal data must be adequate, relevant and limited to what is necessary in relation to the purposes for which those data are processed. In certain circumstances it may be unlawful to process information not described in the transparency information (privacy notice/fair processing material) which informs individuals how their personal data is being used.

It may not be necessary to process certain data items to achieve the purpose. They may be irrelevant or excessive leading to risk of non-compliance with the Data Protection Act.

In the tables below list and justify personal data items needed to achieve the lawful aim of a project that requires information on individuals and their personal characteristics. Insert as many more lines that you need. Work through the table of items and decide whether or not you should be collecting the information, examine each data field and decide if you need it.

There are two sections in the table below, one for personal data and one for personal sensitive data items.

Data Categories[Information relating to the individual's]

Is this field

used?

N/A Justifications [there must be justification for collecting the data items. Consider which items you could remove, without compromising the needs of the project]

Personal Data

Name N

NHS number N

Address N

Postcode N

Date of birth N

Date of death N

Age Y Mother’s age is used to identify risk factor on admission to neonatal care. Baby’s age is in minutes from birth, exact age not know as we don’t use date of birth.

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Not applicable – data will not be transferred outside of the EEA.

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Data Categories[Information relating to the individual's]

Is this field

used?

N/A Justifications [there must be justification for collecting the data items. Consider which items you could remove, without compromising the needs of the project]

Sex Y Used to identify risk factor, risk adjustment.

Marital Status N

Gender N

Living Habits N

Professional Training / Awards N

Income / Financial / Tax Situation N

Email Address N

Physical Description N

General Identifier e.g. Hospital No N

Home Phone Number N

Online Identifier e.g. IP Address/Event Logs N

Website Cookies N

Mobile Phone / Device No N

Device Mobile Phone / Device IMEI No N

Location Data (Travel / GPS / GSM Data) N

Device MAC Address (Wireless Network Interface)

N

Sensitive Personal Data

Physical / Mental Health or Condition Y Of mother and baby. Used to compare outcomes for babies.

Sexual Life / Orientation N

Family / Lifestyle / Social Circumstance N

Offences Committed / Alleged to have Committed

N

Criminal Proceedings / Outcomes / Sentence N

Education / Professional Training N

Employment / Career History N

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Data Categories[Information relating to the individual's]

Is this field

used?

N/A Justifications [there must be justification for collecting the data items. Consider which items you could remove, without compromising the needs of the project]

Financial Affairs N

Religion or Other Beliefs N

Trade Union membership N

Racial / Ethnic Origin Y Used to identify risk factors, risk adjustment.

Biometric Data (Fingerprints / Facial Recognition) N

Genetic Data N

Spare

Spare

Spare

Data quality standards for personal dataIn the box below, describe how you will ensure that personal data is accurate and kept up to date.

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The NNAP is an annual audit, in which new data is used every calendar year. During the audit year, the NNAP provides quarterly data quality reports of aggregated data so that neonatal units and networks can check the quality of the data they submit to the audit.

Data quality and validation checks are carried out on the data prior to analysis for the national report.

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Individual’s rightsIf your project uses personal data you must complete this section.

If your project uses personal data you must state how fairness and transparency will be achieved e.g. privacy notices on websites, posters, and leaflets. The information must be provided in a concise, transparent, intelligible and easily accessible form, using clear and plain language. Any information provided to children should be in such a clear and plain language that the child / vulnerable person can easily understand.

In the box below, please define the way you have ensured that individuals are aware of the rights, if they request those rights how will they achieve them? For example if an individual requests a copy of their information held by you, describe how you would do this. You can insert any relevant policy or process guides in the appendix at the end of this document if they are not already available on your website. This section does not refer to the personal information held about your audit staff.

Individuals rights (where relevant)

Describe how you ensure individuals are aware of these rights

Describe how you would do this

Please copy and paste section of document that states the individuals rights

Individuals are clear about how their personal data is being used.

Included in the public information leaflet.

Published on our website, distributed electronically to neonatal units.

Not applicable.

Individuals can access information held about them

Included in the public information leaflet.

If a parent makes an SAR on behalf of their child to NNAP we will forward this onto the trust/health board providing their care. In line with our SAR procedure ‘We will only respond where we are the data controller of the data. If we are the data processor, we will forward any requests for access to the relevant data controller and write to the individual to advise them that we have forwarded on their request.’

Your trust or health board is the data controller of your baby’s record and only share non-identifiable data with us for the audit, so you will need to contact your neonatal unit directly if you wish to make a rights request. If we receive any requests, we can only forward these on if you provide us with the name of the trust or health board providing your baby’s care. • Right of access: We can let you know which categories of data we collect but you will need to contact your unit directly for a copy of the information as we can’t identify individuals from the data we receive.

Request erasure (right to be forgotten) in certain circumstances, making clear that it does not apply to an

Included in the public information leaflet.

Forward the request to the data controller of the

• Right to erasure, right to rectification and right to object: We are unable to delete, amend or update any

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individual’s health or care record, or for public health or scientific research purposes

patient record. of your baby’s personal data as we are not data controllers of patient information and are unable to identify individuals from the dataset provided. The right to erasure also does not apply to an individual’s health record or where it is used for public interest purposes. However, you can opt out of your baby’s data being used for the audit by telling the staff on the neonatal unit where your baby is receiving care that you do not want your baby’s information to be included in the National Neonatal Audit Programme. The staff will then exclude your baby’s data from any submission.

Rectification of inaccurate information

Included in the public information leaflet.

Forward the request to the data controller of the patient record.

• Right to erasure, right to rectification and right to object: We are unable to delete, amend or update any of your baby’s personal data as we are not data controllers of patient information and are unable to identify individuals from the dataset provided. The right to erasure also does not apply to an individual’s health record or where it is used for public interest purposes. However, you can opt out of your baby’s data being used for the audit by telling the staff on the neonatal unit where your baby is receiving care that you do not want your baby’s information to be included in the National Neonatal Audit Programme. The staff will then exclude your baby’s data from any submission.

Restriction of some processing Included in the public information leaflet.

Forward the request to the data controller of the patient record.

• Right to restriction (only store your personal data and undertake no further processing): This only applies in certain circumstances. Any requests for restriction of processing should be sent to your trust or health board and

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they will inform us where applicable.

Object to processing undertaken on some legal bases

Included in the public information leaflet.

Forward the request to the data controller of the patient record.

• Right to erasure, right to rectification and right to object: We are unable to delete, amend or update any of your baby’s personal data as we are not data controllers of patient information and are unable to identify individuals from the dataset provided. The right to erasure also does not apply to an individual’s health record or where it is used for public interest purposes. However, you can opt out of your baby’s data being used for the audit by telling the staff on the neonatal unit where your baby is receiving care that you do not want your baby’s information to be included in the National Neonatal Audit Programme. The staff will then exclude your baby’s data from any submission.

Complain to the Information Commissioner’s Office;

Included in the public information leaflet.

Published on our website, distributed electronically to neonatal units. Individual can contact the ICO directly with a complaint via the email provided on our privacy notice to them.

You do also have the right to lodge a complaint with the Information Commissioner’s Office (ICO) at [email protected] if you have concerns about the way your baby’s personal data are being handled.

Withdraw consent at any time (if processing is based on consent)

Not applicable. Not applicable. Not applicable.

Data portability (if relevant)

Not applicable. Not applicable. Data is not collected directly from the data subject, part of a contract or based on consent.

Not applicable.

Individual knows the identity and contact details of the data controller and the data controllers data protection officer

Included in the public information leaflet.

Published on our website, distributed electronically to neonatal units.

Healthcare Quality Improvement Partnership (HQIP) is the data controller of the National Neonatal Audit Programme and can also be contacted if you have any

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questions about how your information is being used for the audit. Please direct any queries for the Healthcare Quality Improvement Partnership Data Protection Officer to: [email protected].

In which countries the data controller is processing their personal data.For data transfers outside the EU, a description of how the data will protected (e.g. the recipient is in an ‘adequate’ country / how a copy of the safeguards can be obtained.

Included in the public information leaflet.

Published on our website, distributed electronically to neonatal units.

We will not be processing data outside of the UK so no additional adequate safeguards are required.

RCPCH do not share any personal information or transfer any of the data outside of the UK.

To know the legal basis under which their information is processed. Is there a clear legal basis for the processing of personal data? If so, what is the legal basis?

Included in the public information leaflet.

Published on our website, distributed electronically to neonatal units.

We are processing under schedule 6(e) and schedule 9(i) of GDPR.

The legal basis for using this information is that it allows us to carry out a task that is in the public interest. In respect of the National Neonatal Audit Programme the public interest is protected through ensuring that high standards and quality of neonatal care continue1. We also protect your privacy rights by providing you with the option to opt out.1. In this case, the legal bases for processing under GDPR are Article 6 (1) (e) and Article 9 (2) (i).

To know the purpose(s) for the processing of their information.

Included in the public information leaflet.

Published on our website, distributed electronically to neonatal units.

Neonatal unit staff enter your baby's information onto a secure electronic record system. All neonatal units share information from these electronic records with the Neonatal Data Analysis Unit at Chelsea and Westminster NHS Foundation Trust and Imperial College London. This includes sensitive personal data, including NHS number (CHI number in Scotland), information about the care mum and baby received and any health conditions. However, no names are

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included in this information transfer. The Neonatal Data Analysis Unit uses the information for the National Neonatal Audit Programme and for other research purposes.

Whether the provision of personal data is part of a statutory obligation and possible consequences of failing to provide the personal data.

Not applicable Not applicable- there is no statutory obligation for parents to provide their baby’s data to the NNAP audit.

Not applicable

The source of the data (where the data were not collected from the data subject)

Included in the public information leaflet.

Published on our website, distributed electronically to neonatal units.

Neonatal unit staff enter your baby's information onto a secure electronic record system. All neonatal units share information from these electronic records with the Neonatal Data Analysis Unit at Chelsea and Westminster NHS Foundation Trust and Imperial College London.

Categories of data being processed

Included in the public information leaflet.

Published on our website, distributed electronically to neonatal units.

Neonatal unit staff enter your baby's information onto a secure electronic record system. All neonatal units share information from these electronic records with the Neonatal Data Analysis Unit at Chelsea and Westminster NHS Foundation Trust and Imperial College London. This includes sensitive personal data, including NHS number (CHI number in Scotland), information about the care mum and baby received and any health conditions. However, no names are included in this information transfer. The Neonatal Data Analysis Unit uses the information for the National Neonatal Audit Programme and for other research purposes.

Recipients or categories of recipients

Not applicable. Not applicable. No personal data is being shared by RCPCH.

The National Neonatal Audit Programme team at the Royal College of Paediatrics and Child Health does not have access to any information that could identify individual

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babies and no babies are identified in our reports. The Royal College of Paediatrics and Child Health does not share any personal information or transfer any data outside of the United Kingdom.

The source of the personal data

Included in the public information leaflet.

Published on our website, distributed electronically to neonatal units.

Neonatal unit staff enter your baby's information onto a secure system for electronic records. All neonatal units share information from these electronic records with the Neonatal Data Analysis Unit at Imperial College London.

To know the period for which their data will be stored (or the criteria used to determine that period)

Included in the public information leaflet.

Published on our website, distributed electronically to neonatal units.

The National Neonatal Audit Programme data is fully anonymised and held separately from any identifiable data sources. The Royal College of Paediatrics and Child Health does not hold any personal data and anonymised and summarised data needed to support the programme will be held indefinitely on behalf of the Healthcare Quality Improvement Partnership.

The existence of, and an explanation of the logic involved in, any automated processing that has a significant effect on data subjects (if applicable)

Not applicable. Not applicable. Not applicable.

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Privacy Risks

Types of Privacy risks Risks affecting individuals or other third parties, for example; misuse or overuse of their personal data, loss

of anonymity, intrusion into private life through monitoring activities, lack of transparency. Compliance risks e.g. breach of the GDPR Corporate risks (to the organisation), for example; failure of the project and associated costs, legal penalties

or claims, damage to reputation, loss of trust of patients or the public.

Risks affecting individualsPatients have an expectation that their privacy and confidentiality will be respected at all times, during their care and beyond. It is essential that the impact of the collection, use and disclosure of any patient information is considered in regards to the individual’s privacy.

In the box below insert the number of individuals likely to be affected by the project. This could be the number of unique patient records your project holds now and how many more records you anticipate receiving each year.

Please complete the table below with all the potential risks to the Individuals of the information you hold on them, your corporate risks and compliance risks.

When completing the table you need to consider if:

Inadequate disclosure controls increase the likelihood of information being shared inappropriately. The context in which information is used or disclosed can change over time, leading to it being used for different

purposes without people’s knowledge. Measures taken against individuals as a result of collecting information about them might be seen as intrusive. The sharing and merging of datasets can allow organisations to collect a much wider set of information than

individuals might expect. Identifiers might be collected and linked which prevent people from using a service anonymously. Vulnerable people may be particularly concerned about the risks of identification or the disclosure of

information. Collecting information and linking identifiers might mean that an organisation is no longer using information

which is safely anonymised. Information which is collected and stored unnecessarily, or is not properly managed so that duplicate records

are created, presents a greater security risk. If a retention period is not established information might be used for longer than necessary.

Corporate and compliance risksIn the table, list the corporate risks to your organisation which could include reputational damage, loss of public trust, financial costs and data breaches. Below these, insert any compliance risks.

Possible corporate risks include:

Non-compliance with the DPA or other legislation can lead to sanctions, fines and reputational damage. Problems which are only identified after the project has launched are more likely to require expensive fixes.

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Each year, the NNAP includes information about approximately 100,000 babies. There is likely to be a small increase on this number each year.

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The use of biometric information or potentially intrusive tracking technologies may cause increased concern and cause people to avoid engaging with the organisation.

Information which is collected and stored unnecessarily, or is not properly managed so that duplicate records are created, is less useful to the business.

Public distrust about how information is used can damage an organisation’s reputation and lead to loss of business.

Data losses which damage individuals could lead to claims for compensation.

Examples of compliance risks include:

Non-compliance with the common law duty of confidentiality Non-compliance with the GDPR. Non-compliance with the Privacy and Electronic Communications Regulations (PECR). Non-compliance with sector specific legislation or standards. Non-compliance with human rights legislation.

Managing Privacy and Related risksThere are many different steps you can take to reduce a privacy risk. For example

Devising retention periods which only keep information for as long as necessary and planning secure destruction of information.

Implementing appropriate technological security measures. Ensuring that staff are properly trained and are aware of potential privacy risks. Developing ways to safely anonymise the information when it is possible to do so. Producing guidance for staff on how to use new systems and how to share data if appropriate. Using systems which allow individuals to access their information more easily and make it simpler to respond

to subject access requests. Taking steps to ensure that individuals are fully aware of how their information is used and can contact the

organisation for assistance if necessary. Selecting data processors that will provide a greater degree of security and ensuring that agreements are in

place to protect the information which is processed on an organisation’s behalf. Producing data sharing agreements which make clear what information will be shared, how it will be shared

and who it will be shared with.

Use your project plan and a detailed explanation of information flows to identify more precisely how a general risk may occur. For example, there may be particular points in a process where accidental disclosure is more likely to happen.

The DPIA actions should be added to into your project plan and risks added to your contract review documentation.

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Privacy Risks and Actions Table Please see appendix 2 for additional guidance on completing this table

What are the potential risks to the individuals whose personal data you

hold?

Likelihood of this

happening1 Very

unlikely2 Unlikely3 Possible

4 Likely5 Very Likely (See guidance

below for definition))

Impact 1 -Insignificant

2-Minor3-Moderate

4-Major5-Catastrophic (See guidance

below for definition)

Overall risk score

(likelihood x impact =

score)

Will risk be accepted,

reduced or eliminated?

Mitigating action to reduce or eliminate each risk

OR Where risk is accepted give

justification.

Explain how this action eliminates or reduces

the risk

Expected completion

date

Responsible owner

Illegitimate access, undesired modification and disappearance of data

1 5 5 Reduced RCPCH does not hold personal or sensitive data for the NNAP.

Neonatal Data Analysis UnitData transfer from Clevermed Ltd to NDAU adheres to Information Governance standards and appropriate technical security measures will be put in place. The data base file is encrypted using AES256 with a secure password. The file is then place on Clevermeds N3 server for NDAU to download at Chelsea and Westminster NHS Foundation trust, also on

Adequate technical measures have been put in place to reduce the risk of a security incident by balancing the type of data being processed against the technical solutions available. If there is an incident, staff have received appropriate training and there is an appropriate procedure in place to contain the risk.

Already in place

NDAU

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the secure N3 network. The data never leaves the N3/SWAN network. Clevermed are ISO 27001 accredited. This ensures secure transfer of personal data and health records. Additionally any transfer of anonymised data to outside parties is done using a file archiver that encrypts and password protects anonymised data which is then sent via a secure file transfer system.

The security measures are put in place across the parties ensure that(1) only authorised individuals can access, alter, disclose or destroy data(2) authorised individuals act only within the scope of their legitimate duties and responsibilities by Role Based Access Control (RBAC)(3) if personal data is accidentally lost, altered or destroyed, it can be recovered to prevent any damage or distress to the individuals concerned

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and followed through agreed standard protocols and procedures(4) Personal data can only be accessed via NHS Trust computers. Computers are password protected in an office with access controls.(5) Identifier files sit separately to health data and are stored on a NHS Trust server with access controls.

Duplicated copies of the same information stored in two different places 2 2 4

Reduced NDAU have a data cleaning and validation procedure in place to manage this.

NNAP can review this process through regular contract review meetings with NDAU.

Removes duplicate records, holds a master database from which data are queried. Ongoing NDAU

Inadequate data sharing agreements in place when sharing information 2 3 6

Eliminated

All new data sharing agreements to be reviewed by the RCPCH Data Protection Officer

To ensure that the DSA is fit for purpose

As and when necessary

NNAP project team/RCPCH DPO

Inappropriate security on the system holding the data, including data being moved outside the EU.

1 5 5 Eliminated RCPCH does not hold personal or sensitive data for the NNAP.

Data transfer from Clevermed Ltd to NDAU adheres to Information Governance standards.

Reduces risk of data breach.

Already in place

NDAU

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The data base file is encrypted using AES256 with a secure password. The file is then place on Clevermeds N3 server for NDAU to download at Chelsea and Westminster NHS Foundation trust, also on the secure N3 network. The data never leaves the N3/SWAN network. Clevermed are ISO 27001 accredited. This ensures secure transfer of personal data and health records. Additionally any transfer of anonymised data to outside parties is done using a file archiver that encrypts and password protects anonymised data which is then sent via a secure file transfer system.

No transfer of personal or sensitive data outside of the UK.

Data collection seen as intrusive by individuals due to the opt out rather than consent approach.

2 2 4 Reduced Renewal of public information leaflet which includes all information required by GDPR. This will provide information for parents on how they can opt out of their

Communicates the purpose and legal basis for processing data.

Already in place

NNAP project team

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baby’s data being used in the audit. It will clearly explain the purpose of processing the data and the legal justification.

System for opt out is not robust enough 2 3 6

Reduced Clevermed Ltd. Implementing new opt out process in May 2018. January 2020, NDAU will send a list of NHS numbers to NHS Digital who will then send a list of NHS numbers with anyone who has opted out removed. NDAU will apply to records before sharing with NNAP. NNAP will monitor effectiveness of process through contract review meetings with Clevermed Ltd. This process has been reviewed by the DPO for adequacy.

Process being improved to ensure fit for GDPR and ready for future changes to national opt out system.

Completed

NNAP project team

Future changes to the way data is used or shared. This may include the merger of datasets which may result in a wider dataset than individuals would expect.

2 3 6 Accepted Processes and guidance will be reviewed on a regular basis and with any change to the project methodology. If we are considering merging datasets, we will first talk to the DPO about the GDPR implications and whether we need to make any changes to the privacy notice, or

Ensures timely review of communication and processes if there is a change in the project.

NA NNAP project team

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reconsider our legal grounds for processing.

Knowing when the data should be deleted 2 2 4

Accepted RCPCH does not hold personal or sensitive data for the NNAP. The NNAP can monitor with NDAU through regular contract review meetings.

NDAUPseudo anonymised data (the NNRD) will be held as a lifelong data base. Personal data is heldseparately from the NNRD data. The retention period of identifiers is conditional on CAG Section 251 approval.

Ensures regular review if there are any changes to IG permissions or project methodology. NA

NDAU/ NNAP project team

Being able to rectify or delete the data if requested.

2 2 4 Eliminated RCPCH does not hold personal or sensitive data for the NNAP.

The RCPCH would forward requests to the trust/health board, who are the data controller for the patient record.

The RCPCH will include guidance to staff on how to do this in its data protection policy and subject access request procedure. The NNAP will

Ensure that audit staff know how to deal with a subject access request.

RCPCH/ Healthcare provider

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include the process in its internal manual. There is specific guidance for dealing with clinical audit rights requests developed by Information Governance which is reviewed annually as part of the information governance framework.

Being able to update data regularly 1 2 2

Accepted The NNAP is an annual audit, in which new data is used every calendar year. During the audit year, the NNAP provides quarterly data quality reports of aggregated data so that neonatal units and networks can check the quality of the data they submit to the audit.

Data quality and validation checks are carried out on the data prior to analysis for the national report.

Neonatal units and networks are given the opportunity to quality assure data regularly.

Data quality and validation process assures quality of final annual data.

NNAP project team

Being able to restrict processing of the data if requested.

2 2 4 Accepted RCPCH does not hold personal or sensitive data for the NNAP.

We forward on requests straight to the trust/health board to deal with

Completed

RCPCH/ Healthcare provider

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The RCPCH would forward requests to the trust/health board, who are the data controller for the patient record.

The RCPCH will include guidance to staff on how to do this in its data protection policy and subject access request procedure. The NNAP will include the process in its internal manual. There is specific guidance for dealing with clinical audit rights requests developed by Information Governance which is reviewed annually as part of the information governance framework.

these as they are the data controller of the information and therefore responsible for making these decisions.

Ensure that audit staff know how to deal with a subject access request.

Process for dealing with subject access requests is not included in the contract between NDAU and NNAP.

2 2 4 Eliminated NDAU are the data controller for the NNRD. Healthcare providers are the data controller for the patient record. There is not currently a clause in the contract between us and NDAU to set out how we will manage subject access requests relating to NDAU data. We will propose an amendment to the

Will ensure there are no ambiguities in the process for dealing with subject access request and all parties are clear of their roles and responsibilities.

Completed

NNAP project team / NDAU

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contract between us and NDAU to set out the process.

Corporate risks & compliance risks section

What are the potential risks to the individuals whose personal data you hold?

Likelihood of this happening1 Very unlikely2 Unlikely3 Possible4 Likely5 Very Likely (See guidance below for definition))

Impact 1 -Insignificant2-Minor3-Moderate4-Major5-Catastrophic (See guidance below for definition)

Overall risk score

(likelihood x impact =

score)

Will risk be accepted,

reduced or eliminated?

Mitigating action to reduce or eliminate each risk

OR Where risk is accepted give justification.

Explain how this action eliminates or reduces the risk

Expected completion date

Responsible owner

Volunteers and Officers not having appropriate data protection training 1 3 3

Reduced

Update guidance given to officers and volunteers where they will be handling College personal data. Also investigating an e-learning module option.

They will receive appropriate training and therefore have better data protection awareness

December 2020

Data Protection Committee/Information Governance/HR

Sharing information with partners – especially overseas where the same level of protection is not offered

1 3 3 Eliminated To only share information overseas where absolutely necessary and only the minimum required. Ensure that where one of the countries does not have adequate levels of protection in place, that one of the safeguards set out in article V in GDPR are satisfied or one of the

This will ensure that adequate safeguards are in place to allow the transfer of data where necessary.

Ongoing All staff

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derogations of the general prohibition of transfers apply. Where overseas transfer does take place, staff must inform the IGM.

Differing approach across the four nations

1 2 2

Reduced IGM to regularly communicate with the four nations and ensure they are made aware of all internal information governance policies and procedures and received data protection training. Head of Media and External Affairs sits on DPC and communicates back to nations

This will ensure staff have the same level of awareness as staff in the London office Ongoing IGM

Lack of resource to manage information governance

1 3 3

Accepted Information Governance has a specific budget and there is one full time permanent member of staff and one full time permanent supporting member of staff. If further resources are required, the IGM will submit a proposal to SMT.

There is an internal process to request further resources if necessary. Ongoing IGM/SMT

Data stored outside of College systems (personal mobiles, laptops, homeworking)

3 2 6 Accepted It is not practically feasible for all systems to sit within the centralised College network as it is near impossible to control the purchase of systems within the

N/A. This risk is accepted. When staff do purchase new IT systems, they will be required to do a PIA which they will

Ongoing All staff

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College.

need to submit as part of their proposal to SMT so the IGM should at least be able to ensure the system is compliant

Overload of SAR’s (now that there is no charge)

1 2 2

Accepted At the moment we have a relatively low number of SARs. The IGM and SIRO will monitor this and, if there is a significant increase, look at ways to prioritise workload or whether additional resources are needed N/A Ongoing IGM

Non-compliance with GDPR leading to sanctions or breaches. 1 3 3

Reduced Comprehensive framework of IG Policies and Procedures, adequate staff training and appropriate security measures in place. Completion of the GDPR work programme to bring the College in line with the new legislation

Greater awareness of the importance of data protection compliance across the organisation

December 2021 IGM

Duplicate information is less efficient to the business 1 3 3

Accepted Comprehensive framework of IG Policies and procedures as well as staff training will support staff in good records management practice

Better records management practice Ongoing All staff

Losing future bids for audits because of a serious breach

1 3 3 Reduced Ensure a good awareness of the importance of

Reduce a risk of a security breach if

Ongoing All staff

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and lack of trust in RCPCH

Data Protection compliance across the College will reduce the risk of a security breach

staff are more aware of the importance of compliance and their responsibilities

Loss of trust in the RCPCH following reputational damage by a breach. 1 3 3

Accepted

Ensure a good awareness of the importance of Data Protection compliance across the College will reduce the risk of a security breach

Reduce a risk of a security breach if staff are more aware of the importance of compliance and their responsibilities Ongoing All staff

Data losses leading to claims for compensation by individuals 1 3 3

Reduced

All new high risk processing activities will need to undertake a PIA which will look at how to mitigate this risk

By design by default, this will reduce the risk of data loss by building in data security to new systems Ongoing

All staff/IGM

Not identifying all potential privacy issues at the start of GDPR could lead to costly solutions. 1 3 3

Reduced The College undertook an external audit in May 2017 to highlight gaps and weaknesses in current practice and offer recommendations. These recommendations have been assessed and prioritised and the College is working through them as part of a three year programme of work which is being overseen by the Data Protection Committee

The key risks have been identified and the College is working through solutions

December 2021 IGM/DPC

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Existence of contact lists separate to Care leading to silos of information, inaccurate and out of date information being used in relation to our members and non-members. Particularly, not applying up to date marketing suppressions 4 2 8

Reduced IS/DCM are currently undertaking work to transfer contact lists outside of Care into Care. Where there are exceptions sitting outside the process, this will also be documented on the Information Asset Register so that we fulfil our legal requirements in terms of accountability and Governance.

By having one source of truth for our membership files and for our member and non-member contacts, which is accessible throughout the College, this will reduce duplication and information silos Ongoing

DCM/IS/ All Staff

Unclear designation of responsibility for co-hosted events leads to issues with dealing with individual rights requests and who is responsible for which elements of DP e.g. who is responsible for keeping records up to date 2 2 4

Reduced Governance and the IGM are currently reviewing contracts to ensure appropriate data protection clauses are in place in contracts which will define responsibilities in relation to data protection. Where they do not, we will write to suppliers with additional clauses. These are being prioritised.

By having contracts in place, this will legally clearly define responsibilities so that each party is aware of what their responsibilities are Ongoing

Governance/IGM/All Staff

Loss of volunteers because legal requirements are too onerous 2 3 6

Accept

Monitor the situation N/A Ongoing All StaffCommunications not meeting the right audience because opt outs and opt ins are not being used appropriately

4 2 8 Reduced Appropriate mandatory data protection training is given to all staff and includes a section on consent and marketing and fundraising. DCM/IS

By recording mailing preferences in a central location which integrates with RCPCH online

Ongoing IGM

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are currently undertaking work to transfer contact lists to Care so that we can centrally manage mailing preferences for communications and evidence that opt ins and outs are maintained

accounts, users can update their mailing preferences at any time and these will be applied each time a report is run from the system. DCM manage bulk mailing centrally and advise on suppression categories.

The overseas adequacy transfer mechanism the College is relying on are invalidated which would mean that the College is no longer compliant with Chapter V of GDPR e.g. if Privacy Shield is invalidated 2 3 6

Reduced

Ensure that all contracts with data processors include the required GDPR contract clauses which include assigning responsibility for ensuring compliance with Chapter V. Record where data is transferred overseas and mechanism used on the Information Asset Audit. Undertake a PIA if sending information overseas so risks can be appropriately mitigated

By ensuring this is in the contracts this places a contractually binding requirement on our data processors to comply. By recording where overseas mechanisms are used, this enables the College to monitor where the potential risk areas are and take action if necessary to mitigate these. Ongoing

Governance/IGM/All Staff

Downloading of data onto servers/ cloud based platform which do not have an adequate level of security in place for the type of data that

2 3 6 Reduced Staff are required to undertake the PIA screening questionnaire if using a new system as part of the PIA Policy.

By undertaking a PIA we are able to identify risks early on before development so

Ongoing All staff

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is being processed

Any system/platform that requires SMT approval will need to submit an SMT paper and it is a requirement of any SMT paper to provide details of whether or not a PIA has been undertaken under the legal/contract section. There will be an annual update of the Information Asset Register which will ask information asset owners to update their relevant sections and any new systems will be captured and noted by the IGM to further investigate if necessary

that we can choose an alternative supplier if they do not meet our security requirements or find ways to mitigate the risk.

Lack of data sharing agreements in place with some oversea exam centres to comply with Article 28 of GDPR (requirement of a written agrement between controller and processor). This is applicable to all processors, regardless of where they are in the world, if the controller is processing data about EU citizens or is situated in the EU. Some overseas centres have refused to sign the data sharing agreement as they have argued it is not

2 3 6 Reduced The overseas centres are hosting on a volunteer basis. If they will not sign the agreement then we either need to find an alternative venue or accept the risk of not having a GDPR compliant contract in place.

By having agreements in place we are able to meet our legal requirements under Article 28 of GDPR.

Ongoing Exams

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applicable to them and their laws.

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Regularly reviewing the DPIA

DPIA should be an ongoing process and regularly reviewed during the lifecycle of the project or programme to ensure

Risks identified are still relevant Actions recommended to mitigate the risks have been implemented and mitigating actions are

successful

You must add to your DPIA every time you make changes to the existing projects, send an updated version to your HQIP project manager and ensure that you incorporate any identified risks/issues to your risk/issue registers of the project contract review form.

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Appendix 1 Submitting your own version of DPIA

If submitting your own version of DPIA please ensure it includes the following items. If any items are missing please add this to your DPIA and then submit it. You must also complete the screening questions above.

Checkbox – Please tick Evidence – Page number and section in your DPIA

Confirmation of advice /consultation sought from Data Protection Officer whilst completing the DPIA

Name of DPOName and role of person approving completion of DPIA form. This must not be the same person that completes the form.

Will the DPIA be published or part of it such as the summary or conclusion (not essential but encouraged). If so, where is it published?

Does it include a systematic description of the proposed processing operation and its purpose?Does it include the nature, scope, context and purposes of the processing Does it include personal data, recipients and period for which the personal data will be stored are recordedDoes it include the assets on which personal data rely (hardware, software, networks, people, paper or paper transmission channels) Does the DPIA explain how each individual’s rights are Managed? See section on individuals rightsAre safeguards in place surrounding international transfer? See section on sending information outside the EEA Was consultation of the

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document carried out and with whom?Organisations ICO registration numberOrganisations ICO registration expiry dateVersion number of the DPIA you are submittingDate completed

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Appendix 2 Guidance for completing the table

What are the potential risks

to the individuals

whose personal data you hold?

See examples above

Likelihood of this happening

(H,M,L)

Likelihood score Description Example

1 Very unlikely May only occur in exceptional circumstances

2 Unlikely Could occur at some time but unlikely

3 Possible May occur at some time

4 Likely Will probably occur / re-occur at some point

5 Very likely Almost certain to occur / re-occur

Impact (H,M,L)

Impact scores Description Example

1 Insignificant No financial loss; disruption to day to day work manageable within existing systems, no personal data loss/ no breach of confidentiality

2 MinorMinor (<£100k) financial loss / disruption to systems; procedures require review but manageable; limited slippage in work activity, breach of confidentiality where < 20 records affected or risk assessed as low where data pseudonymised/files encrypted and no sensitive data

3 ModerateDisruption to financial systems (<£250k); significant slippage in work activity or resources e.g. delay in recruiting staff; procedures and protocols require significant review, breach of confidentiality/ loss personal data where < 100 records involved and no sensitive data

4 Major

Major financial loss (£500k); large scale disruption to deliverables & project plans; business activity severely undermined, wasting considerable time / resources; poor quality report leading to loss of confidence in provider / HQIP / NHSE, breach of confidentiality/loss of personal sensitive data or up to 1000 records

5 Catastrophic Huge financial loss (>£500k); significant threat to viability of the organisation in total or in part; huge disruption to business activity; almost total lack of confidence in project provider / HQIP / NHSE, serious breach of confidentiality/loss of personal sensitive data >1000 records

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involved

Risk score (calculated

field)

Please multiply the likelihood by the severity (likelihood x severity = risk score). This score will help to rank the risk so the most severe risks are addressed first

Will risk be accepted,

reduced or eliminated?

(where risk is accepted give justification)

A = Accepted (must give rationale/justification) R = Reduced

E = Eliminated

Mitigating action to reduce

or eliminate each risk

Insert here any proposed solutions – see managing privacy and related risks section above

OR If a risk has been accepted please give justification here (The purpose of the DPIA is to reduce the risk impact to an acceptable level while still allowing a useful project to be

implemented.)

Explain how this action

eliminates or reduces the risk

Describe how your proposed action eliminates or reduces the possible risk. You may want to assess the costs/resource requirements (i.e. purchasing additional software to give greater control over data access and retention) and balance these against the benefits, for example the increased assurance against a data breach, and the reduced risk of regulatory action and reputational damage.

Expected completion date

What is the expected completion date for your proposed action? Ensure that DPIA actions are integrated into the project plan.

You should continue to use the PIA throughout the project lifecycle when appropriate. The DPIA should be referred to if the project is reviewed or expanded in the future.

Action Owner

Who is responsible for this action?

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