Questions about privacy and research records

Ask what information is involved

Research participation and permission to use health information are related but distinct topics. Where HIPAA applies, an authorization concerns use or disclosure of protected health information. It may be combined with a consent form or handled separately.

Rather than assuming every document does the same job, ask what each one permits. A useful explanation should make clear what information is needed, who may receive it and whom you can contact with a privacy question.

Bring specific questions

Think about the channels you actually use: phone calls, text messages, email, a study app or an online portal. Ask which are intended for scheduling and which can securely carry health information. Avoid putting medical records into a general newsletter form or a public website tool.

• Which records will the research team request from my usual doctor?
• Who can review identifiable records for this study?
• How are samples or study information labeled?
• Could information or samples be used in future research?
• What happens to information already collected if I leave the study?
• How can I change the way the team contacts me?

Keep your own copy and contact list

Store the documents you receive somewhere you can find them again. Put the study name and the relevant contact on the first page of your notes. If you share a device with family members, consider whether downloaded or printed planning notes contain information you would prefer to keep private.

Our general planning tools are intended for nonclinical details such as travel time and questions. You do not need to enter diagnoses, record numbers or detailed medical history to make them useful. Use the research center’s confirmed secure process when the team requests health information.