Data Use and Sharing Agreement Questions

This document is a worksheet of questions and considerations for CHARRS and its partners around data sharing. It is not legal advice and should not be treated as legal advice. It is designed to be used for discussions by CHARRS and its partners, including discussions with attorneys and institutional contracting offices when exploring the terms of a data sharing agreement.

Roles and responsibilities as a data owner / data licensor

CHARRS staff may have specific responsibilities, obligations, and abilities to control how data are shared and used when CHARRS is the data owner. This may also be referred to as the data holder or data licensor. These are some situations when CHARRS may be treated as a data owner:

1. CHARRS collects the data directly (includes research with community leads - doing interviews, community using monitors sponsored by CHARRS, etc.)

2. CHARRS is part of a collaboration to collect data, in which case CHARRS may be collecting data for another partner (such as an academic researcher) and that partner is paying CHARRS. In this situation, it’s important for CHARRS to understand:

   • What are the data requirements (if any) from the original funder or the institution paying CHARRS. For example, some federal grants have specific rules around data releases and the use of personal health information. Academic research institutions may also have rules around data, in addition to those of the funding source. These partners should communicate expectations around data to CHARRS as early as possible so CHARRS can prepare to meet them, including asking for additional capacity like staff time or cloud storage.
   • Will CHARRS staff or team members be expected to meet specific certifications or take training courses? This can be a requirement for certain institutions around information security.
   • How will CHARRS be able to use the data they collect during the project term as well as after the project is completed? If CHARRS wants to have access to the data during and beyond the project term, this may need to be explicitly spelled out in any contracts.

3. CHARRS hires someone else to collect data for CHARRS

   • How will the third party (such as a commercial sensor company or a consultant conducting surveys) store, use, and share the data?
   • Do you want them to delete the data once CHARRS receives it? Do you want them to store the data for you, and for how long?

4. CHARRS uses data from other sources to make a new data “product,” such combining CHARRS’ data with census and state agency data to create a map. CHARRS can be considered the “owner” of this new product and decide how to share and license it. Important: CHARRS must check the licenses on any data it uses to make the data product to be sure that CHARRS has the right to remix it into a new product, and, if it can be reused CHARRS must credit the original source appropriately (here is a guide to commonly used licenses).

When CHARRS is the data owner, what should CHARRS think about when sharing the data?

Who can use what and how they can use it?

CHARRS may want to think about each of these categories independently, and how they intersect. The table below shows some examples.

What other conditions could CHARRS place in a data use agreement, or attach to data and data products?

Data use agreements are a type of contract and contracts can be very flexible, accommodating a wide range of conditions as long as all the partners agree to them. One thing to keep in mind with contracts is that you are responsible for monitoring the conditions to see if they’re being met, and you can’t take action unless a term of the contract is “breached.” This is another reason why it’s important to talk through the expectations for how data will be collected, stored, and used at the beginning of any partnership and to keep checking in with your data partners to support the rules you’ve both agreed to. You want to try and work together to prevent any misuse of data before it happens, and then correct it if it does happen, before having to get the courts involved.

Basic provisions of a data use agreement

Most data sharing agreements will address these topics.

1. Identify who is covered by the agreement and how they will access or contribute data

   • This can be a general group (everyone in Dr. Scott’s research lab) or people who meet certain conditions (users registered with the University’s research data gateway and who are authorized by Dr. Scott)

2. Establish how data will be used and shared, both among the partners and with any external parties. This can include embargoes (ex. data will not be publicly released unto x days after the project is published)  uses and disclosures and prohibit the recipient from using or further disclosing the data

3. Require appropriate safeguards to prevent an unauthorized use or disclosure

4. Require reporting of any unauthorized use or disclosure which the partner becomes aware of

5. Prohibit deanonymizing information or contacting or attempting to contact any individuals who participated in the research (ex. CHARRS surveys homeowners and a research partner cannot attempt to contact those homeowners directly)

6. Place requirements on data use and storage at the end of the contract, such as: all copies of data must be destroyed, data must be preserved in a specific repository, data products must be given to CHARRS, etc.

Other provisions CHARRS could consider

1. Providing ongoing access to the community to data, information, and data products created with CHARRS data
2. Licensing data products to make them public or open, or require attribution to CHARRS
3. Regular meetings to check in on data use and management
4. Requiring that CHARRS be notified if the main point of contact changes, and setting an emergency contact/access option

Finally, CHARRS has a foundational commitment to equity that includes making sure communities are not exploited for their data, that they have access to data collected about them, and that data collected by and about them is used to support improvements in community quality of life. This may not be something CHARRS can require a partner to commit to in a contract (and, if CHARRS did, CHARRS would have to find a way to enforce it which could get complicated and time consuming). But, this is an important value CHARRS can talk about when signing contracts and consider how different contract provisions do or do not uphold that commitment.

For example, when talking with a new partner, asking about topics like:

• How will they protect sensitive data
• If CHARRS can review papers before they’re published to make sure confidential data are protected
• If they will publish aggregate data on a free and open access platform

This can be a way to confirm how CHARRS’ values will be supported with actions during the partnership.