Ensuring the privacy and confidentiality of participants is important. Breaches of confidentiality and privacy in the context of using digital advertising to recruit participants for clinical trials can have serious consequences.
In the worst case scenario, a breach of confidentiality or privacy could result in harm to the participants, such as discrimination or stigmatization. For example, if sensitive personal information is shared without the participant’s consent, they may face negative consequences at work or in their personal life.
A breach of confidentiality or privacy could also damage the reputation of the clinical trial and discourage potential participants from participating in future studies. This could ultimately hinder the progress of medical research and the development of new treatments and therapies.
Breaches can also have legal consequences for all invovled. HIPAA (the Health Insurance Portability and Accountability Act) is a federal law that sets standards for the protection of personal health information. HIPAA applies to entities known as “covered entities,” which include healthcare providers, health plans, and healthcare clearinghouses.
Under HIPAA, covered entities are required to protect the privacy and confidentiality of personal health information by implementing appropriate administrative, physical, and technical safeguards. This includes ensuring that personal health information is only shared with authorized individuals and is not disclosed to unauthorized individuals.
Here are a few strategies to ensure that the risks of privacy and confidentiality breaches are minimized:
- Use a secure online registration system: An online registration system can help to protect the privacy and confidentiality of potential participants by securely collecting and storing sensitive information – without any unauthorized users having access to the information. Wayturn uses secure databases that are HIPAA-approved.
- Use anonymous or pseudonymous identifiers: Using anonymous or pseudonymous identifiers can help to protect the privacy and confidentiality of participants. This way, discussions about individual responses can be done over email without risking breaches, despite it being a relatively insecure channel.
- Send documents over with passwords agreed on beforehand, and ideally shared over secure channels.
Overall, it’s important to take steps to ensure the privacy and confidentiality of participants when using digital advertising to recruit for clinical trials, as breaches can have serious consequences for both the participants and the clinical trial.