Understand Data Principles

Be a Good Data Steward

When you decide to collect data, you take on the role of being a data steward. You need to protect the rights and interests of the people who have provided the information. You build trust by being purposeful, open, and transparent.

Be purposeful

  • Avoid biases when gathering data (e.g., do not only gather from people who have a specific symptom).
  • Recruit a balanced sample (e.g., all genders, races/ethnic groups, ages, and socioeconomic classes).
  • Identify possible barriers to participating and attempt to minimize or remove them (e.g., give people time to ask questions, accommodate various modes of participating such as via computer, paper, phone).

Be open

  • Have an informed consent that clearly states how, what, why, when, and where the data is being gathered.
  • Share the known benefits and risks of providing the information to the registry.
  • State the hoped outcomes or goals of the registry.
  • Indicate who will own the data.

Be transparent

Data stewardship applies to everyone interacting with the registry’s data. Some registries have a designated person responsible for proper data management, whereas others have an entire team dedicated to this role. Regardless of the number of people assigned to this role, the registry should have a governance plan that provides guidance for making decisions about how the registry will be managed and how and with whom the data will be shared. It is the responsibility of these individuals to ensure the data are used appropriately and kept safe and secure. One way to ensure this protection is to enter in data-use agreements with the researchers or other individuals who want to access your registry’s data. Data-use agreements clearly state the permitted uses of the participants’ information and protects the privacy of the registry participants.