Become a youth in data partner

• Ensure consistency with the DMP-PII and the purpose for which prior informed consent has been obtained
• Revaluate likelihood of (re-)identification and risk of harm, particularly if it involves a public data-set containing PII (as above)
• Ensure PII is stored securely to protect privacy (as above)
• Minimize use of PII and risk of disclosure through pro-privacy access controls and analytical tools (as above)

• Don’t transfer data containing PII unless have explicit consent
• Don’t transfer data containing PII in the absence of a data sharing agreement identifying aspects such as purpose and scope of use, privacy protections measures, confidentiality and any limitations)
• Don’t reuse or transfer PII until any inconsistencies with the DMP-PII and/or purpose compatibility have been resolved (e.g. through updated ethics review or consent from participant)

• Plan for archiving or data destruction early in the process. Destroying data can be more secure, however, archiving can be beneficial if the data has ongoing evidentiary, scientific or cultural value. If archiving, identify where and how, the budget require
• Ensure DMP-PII and purpose compatibility (as above)
• Ensure adequate security measures to protect privacy (as above)

• Don’t wait until the end of the project to assess archiving needs when time and resources may be limited
• Don’t assume the longevity of a particular format, future-proof your archives data
• Don’t forget to budget for archiving data, this should be done as part of your Data Management Plan

• Ensure DMP-PII and purpose compatibility (as above)
• Revaluate likelihood of (re-)identification and risk of harm, particularly if it involves a public data-set containing PII
• Indicate in metadata the availability of raw data or minimized data containing PII, if available bilaterally
• Minimize use of PII and risk of disclosure through pro-privacy access controls and analytical tools 

• Don’t include PII in public datasets unless absolutely necessary to preserve the data’s analytic potential, scientific utility or benefit to the participant (and subject to participants informed consent and a rigorous risk assessment)

Ensure compatibility with the DMP-PII (as above) and also the purpose for which prior informed consent has been obtained

Ensure PII is stored securely to protect privacy, through organizational or project specific safeguards to prevent unauthorized access, accidental disclosure or breach of data (physical & technical)

• encryption for the storage and transmission of PII
• access control measures to limited access to PII
• two-factor or multifactor authentication
• cloud services & back-end security

Don’t store data in unsecured locations or on unsecured devices or servers

Don’t store encrypted data and encryption keys in locations where they can be easily accessed simultaneously

Don’t underestimate the importance and value of administrative safeguards to standardize practices (i.e. organizational policies, procedures and maintenance of security measures that are designed to protect private information, data and access)

• Ensure compatibility with the DMP-PII
• De-identify data to anonymize by default unless it will impair the data’s analytic potential, scientific utility or benefit to the participant,
• If you cannot anonymize, minimize the PII and pseudonymize to reduce the disclosure risk
• Provide research participants sufficient information to use reasoned judgment to decide whether or not they wish to participate in the project
• Ensure informed consent is designed to address the following elements:
  • competence, comprehension, full disclosure, voluntariness
  • legitimate scientific purpose for which the PII is collected and scope of use (e.g. stored, transferred, published and whether as anonymized, minimized or raw data)
  • foreseeable risk of privacy loss and consequences
  • meaningful alternatives including opt-in protection/anonymization
  • safeguards to protect privacy, conditions on which PII may be shared and any limitations on reuse or third- party access and use of PII
  • permission to follow-up or contact the participant and for what purpose (including by third- parties)
  • participant’s right to withdraw and rights regarding their data (e.g. to be informed; to access; to rectify; to object; to erase)
  • inclusion of physical, phone and/or electronic contact (at least two forms of contact) that participant can reach to exert her/rights
  • explicit consent and participant’s acknowledgement of understanding
  • if written, provide the participant a copy of processed informed consent
• Use plain language and adapt informed consent to meet the needs of vulnerable populations (e.g. obtain orally or in local language)

• Don’t collect PII unless you have a Data Management Plan and any necessary approvals in place, including the recorded approval of the potential participant
• Don’t collect PII unless you absolutely need it
• Don’t assume that removal of direct identifiers is sufficient to anonymize data or that all de-identification techniques will result in anonymized data. Consider the risk of re-identification of a research participant, particularly if datasets are combined. If there is a reasonable risk of re-identification the information should be handled as PII (i.e. undertake risk analysis, evaluate stronger anonymization techniques, seek informed consent for the disclosure of data and explain its possible consequences)
• Don’t include vulnerable participants or communities if their ability or capacity to provide voluntary informed consent is genuinely in question
• Don’t underestimate the potential of quasi or indirect identifiers to identify an individual, particularly the inherent ability of location-based data to identify participants and their communities, and the increased risk of harm this may pose to potentially vulnerable individuals/communities
• Avoid seeking overly broad consent that may call into question transparency or a research participant’s understanding regarding the use of their PII, be specific regarding the activities, purpose and limitations associated with PII so that the participant can make a genuinely informed decision and downstream users can evaluate purpose compatibility and seek fresh consent if needed

• Develop a Data Management Plan which governs the handling of PII in the research project and beyond (DMP-PII). It should address:
  • the type and nature of PII
  • compliance requirements (including necessary forms for obtaining consent, and ethics clearance, if applicable)
  • legitimate research objectives that will be advanced by the PII
  • foreseeable risks and consequences if participants are identified from the data
  • privacy protection measures (or lack thereof) for collection, storage, transfer and publishing
  • process for obtaining informed consent
  • timeframe or trigger for archiving or deletion of PII
• Employ stricter standards for research involving vulnerable populations such as children or illiterate participants or sensitive data such as ethnicity or religious beliefs
• Undertake due-diligence of datasets previously collected by you or third parties to ensure you are entitled/permitted to use for your research project
• Consult the legal, IRB or ethics clearance committee or any other relevant institutional group for specific institutional, local, regional or national policies and regulatory frameworks that may apply to PII in the context of your work

• Don’t leave the handling of PII and privacy protection as an after-thought, plan ahead!
• Don’t forget to check local laws and donor or third-party requirements in addition to institutional policies governing research ethics and privacy protection (seek expert support if unsure!)
• Don’t ignore ethical practices/standards, if your institution does not have an ethics framework or clearance process in place self-assess!
• In assessing whether information is capable of identifying someone (i.e. PII) don’t limit your focus to direct identifiers, also consider indirect/quasi identifiers. Appreciate this will depend on the context of the research project, the data in question and external data which is or may become otherwise available (i.e. there is no exhaustive list).
• In assessing risk of harm don’t forget to consider potential harm to the participant’s community or groups of individuals that can otherwise be identified or associated with the participant