2.2 Ethical Issues - Sensitive Data - Research Data Management - LibGuides at Washington State University

2.2 Ethical Issues: Sensitive Data - Page Contents

Ethical Issues: Sensitive Data

Personal Health Information and HIPAA:

WSU Institutional Review Board (IRB)
Doing research with human subjects is a complicated matter. Often times, if you are working with human subjects, your work will need to be overseen by WSU’s Institutional Review Board (IRB). The IRB’s vision is to protect human research participants in medical and non-medical endeavors. Typically, if you decide to work with human subjects, it is a good idea to contact your IRB to see if they need to be involved in your work or not.
UC California Berkeley
Sensitive data is any data that has any kind of patient health information (PHI) or identifiable information in it and whose protection is required by law/regulation. There are direct identifiers and indirect identifiers that qualify as "PHI" – in total there are 18; Here, the University of California Berkeley lists and describes all 18 PHI identifiers.
HIPAA Privacy Rule
HIPAA is the US legislation that protects medical or healthcare data; any medical research involving human subjects should be HIPAA compliant. Consult the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule Information for Researchers here for info on HIPAA.

For example, using Excel to collect sensitive data or using the Cloud services to store your sensitive data is a bad idea and is not recommended (see WSU's matrix for "acceptable" Cloud usage); though, using Excel to analyze de-identified data is fine. Always evaluate the anonymity of your dataset.

WSU Cloud Computing Policies and Guidelines

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Data Sharing Sensitive Data

In order to ethically share confidential data, one must do the following:

Obtain informed consent by research participants for data sharing (e.g. in an open repository or archive)
Try to anonymize the data the best that you can through removing HIPAA identifiers from your dataset
Add restrictions to your data usage

ICPSR
See the ICPSR for recommendations on informed consent language guidelines for the creation of data sharing consent form templates.

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Software for Sensitive Data

REDCap and Qualtrics:

There are a couple of software options that are designed to collect sensitive data in a reliable and secure way. The two software packages that are safe to store and collect sensitive data are REDCap and Qualtrics:

REDCap
It is a web-based application that is designed to create and manage online databases and surveys. It is a HIPAA compliant electronic data capture platform with the ability to collect data with quality assurance measures like data validation, per-user basis data access rights, de-identification of data for PHI, and has the ability to import and export data to various statistical programs. All data is stored in the REDCap data centers on their secure servers and is regularly backed up. There is no limit to the number of projects that you can take on, but larger projects are handled on a case to case basis.

WSU is an institutional REDCap partner.
- New WSU users should send an email to a REDCap Administrator requesting to be added as a user. The email should be sent to spokane.redcap@wsu.edu with your name and position at WSU.
- Non-WSU research staff should contact the REDCap project’s PI for the project they will be working on and have the PI request access for them.
- WSU students should request access by sending an email to spokane.redcap@wsu.edu, and have their WSU sponsor send an email also.

Qualtrics
An online survey tool with the ability to send and track survey invitations and reminders. It can also generate in-depth reports, statistics, and can export data for various kinds of analysis. It can be used to store low to high risk data with PHI but it may NOT be used to store non-PHI high risk data. Qualtrics is not designed to be HIPAA-compliant.

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Libraries

Research Data Management

2.2 Ethical Issues: Sensitive Data - Page Contents

Ethical Issues: Sensitive Data

Data Sharing Sensitive Data

Software for Sensitive Data