Equity in Civic Technology, Privacy & Data
Preserving Student Privacy and Well-Being When Conducting Mental Health Surveys
Since the start of the pandemic, schools, hospitals, and government agencies have expressed concerns about increasing mental health issues among students. As these concerns grow (coupled with the increasing focus on social emotional learning), educational institutions want to understand the most pressing mental health issues confronting their student populations. One approach they have taken is to survey students about overall health and behaviors, including mental health and well-being considerations. Although such surveys can inform school efforts to support students’ mental health, given the sensitivity of the information they seek, educational institutions should ensure that they are administered, analyzed, reported, and governed in privacy-forward, ethical ways.
These surveys may be conducted on representative samples of student populations or administered to all students in a class or school. Typically, as in the case of the popular Youth Risk Behavior Survey, the surveys are used to understand overall trends in student health at a population level to inform systemic decisions such as resource allocation or intervention programs, rather than for individual intervention or care. Consequently such surveys are typically administered anonymously and do not request personal information like name or date of birth. (Surveys used for intervention or engagement with specific students present significant additional challenges and considerations that we do not address here.)
Student surveys can offer a critical avenue for understanding student and youth behavior. In particular, these surveys can help schools:
- Understand overall trends in students’ mental health and well-being: This allows schools to determine where and how to allocate resources to mental health. For example, surveys can highlight trends like suicidal ideation, indicating that educational institutions should dedicate resources to suicide prevention.
- Determine factors that either contribute to or detract from students’ well-being: Survey results may provide information about student needs that allow educational institutions to structure education in ways that are conducive to well-being, such as by providing age-appropriate sex education if surveys show that students are engaging in unsafe sexual behavior. Additionally, surveys may allow students to express concerns or considerations they would not feel comfortable raising directly or, for younger students, may not have the language to express.
While well-being surveys can be beneficial, they also raise a number of concerns that schools need to consider before administering them:
- Privacy violation: Even though surveys typically do not collect personal information like name or date of birth, they often collect significant demographic information (e.g. grade, race) that could render responses identifiable. Consequently, given the sensitivity of survey data about subjects such as suicidal ideation or bullying, any breach or leak of survey data would be a substantial privacy violation, leading to loss of trust with the community, the potential for bullying or stigmatization, and other harms like financial damage if student or family identities are stolen.
- Data misuse: Additionally, insufficient retention limits and access control policies, along with any secondary uses or sharing of survey data with other organizations, could violate students’ and families’ expectations about how the data will be used. Misuse of survey data could cause harm to students in a number of ways, including sharing data with law enforcement or other agencies (which could lead to punitive outcomes and feed the school-to-prison pipeline), repurposing data (which could damage community trust and lead students to feel that their privacy was violated), or keeping data too long (which can expose students to unnecessary privacy or other harms if the data is breached). Additionally, survey data could out students or be used against students to profile them if the data is not anonymous. Even anonymous data could contribute to punitive or inequitable discipline policies (for instance, if a school took a zero tolerance policy for violence in school without realizing that gender non-conforming students are getting involved in fights as a response to bullying).
- Community trust: Given the sensitivity of the data collected during surveys, they may feel intrusive to students and their families, especially if communities are surprised or unaware they are happening. In addition, CDT research has shown that less than half of parents have had discussions with their child’s school about how the school protects student data. Given the sensitivity of survey data, it is critical that parents understand how the data will be protected in order for them to trust the school with such impactful information.
- Legal compliance: If not carefully administered, surveys may run afoul of laws such as the Protection of Pupil Rights Amendment (PPRA) or state laws, which give parents the right to consent or opt out of certain kinds of data collection about their child. Several of the topics protected by PPRA are likely to be relevant to mental health surveys (such as “mental or psychological problems of the student or the student’s family” and “sex behavior or attitudes”). Consequently, parents need to be given the opportunity to either opt out of or consent to their child’s participation in the survey. In order for parents to make an informed choice, they need to understand what the survey will discuss and how the data will be used and protected.
Given the concerns raised by these surveys, schools should follow a number of best practices when administering them in order to protect students and foster trust amongst the school community:
- Engage the community: Community engagement prior to the survey and throughout its administration can strengthen relationships with the community and limit harm to students and families. Community engagement should be robust and run throughout the lifecycle of the survey. Before the survey is issued, engagement should aim to understand whether the community feels the surveys are in their best interests and, if so, how the survey should be administered to minimize harm and maximize benefit. Additionally, engagement should ensure that the community understands the goals of the survey and how the data will be used. Community engagement should also be used to inform the design of the survey, both in terms of what data will be collected, but also to ensure community concerns (such as disciplinary uses) are addressed and remediated. After the survey is concluded, the community should be consulted to ensure the survey was administered as expected.
- Design the survey with privacy and security in mind: Surveys should be constructed and data should be managed in a way that prioritizes privacy and security.
- Questions should be designed to limit the identifiability of participants. For instance, instead of asking students to provide their GPA (e.g. 3.6), ask them to select what GPA range they are in (e.g. A-range).
- Individual-level survey data should only be available to people who are analyzing the data or need the raw data for an educational purpose that cannot be served by the aggregated data.
- Prioritize privacy and security during data analysis: Privacy and security should be a key factor when analyzing data, especially if that data will ever be released externally. Schools should consider privacy-protective practices like suppressing small cell sizes, or bucketing or combining cells where necessary (such as reporting junior and senior data together to avoid overly small cell sizes).
- Develop clear governance policies: Educational institutions need clear policies on how survey data will be used, who will have access to the data, and how long the data will be maintained. These policies should be clearly communicated to anyone who will interact with or have access to the survey data, as well as being communicated to the community in the community engagement process discussed above.
- Ensure vendor and third-party compliance: In addition to clarifying and documenting internal policies, schools should ensure that any vendors or third-party companies that are involved with the administration of the survey or that otherwise have access to the survey data abide by the same policies for use, storage, and sharing. These policies should be laid out in any vendor contract the school maintains with the company.
- Comply with relevant laws: Before administering surveys, schools should consult with legal counsel to ensure that their surveys, and their processes for administering them, comply with federal and state laws. For instance, if their survey includes subject matter around “sex behavior or attitudes,” they likely need to get consent from parents to comply with PPRA.
In order to ensure that student well-being surveys serve their populations effectively, and to avoid unintended consequences, schools should ensure that their survey administration complies with the best practices above.