If you have been to the doctor since 1996 you have probably had to review and sign a privacy agreement concerning your health information, commonly known as HIPAA. It protects your privacy with rules about how your health information can be shared.
HIPAA and Its Influence
Cancer registries collect information not subject to these restrictions. Instead, the rules about how individual registries share information is decided by the registries themselves and their state legislatures. Researchers use cancer registries to identify study participants, and so have to navigate all the varying requirements. For example, a researcher working on an FDA-regulated safety study must request approval from each registry from which they need information, and follow each registry’s particular process requirements.
Researchers with RTI-HS have worked with cancer registries since 2003 and understand the intricacies of the process. Based on that experience, they created a study to understand the challenges research organizations face when conducting research that involves utilizing cancer registries.
Their study indicated that it can take a substantial amount of time--seven months on average--to obtain research approval at many registries, increasing the cost and burden of research.
Less is More
The research indicated that less restrictive permission steps for contacting patients was related to shorter research lag times and a greater number of responses.
Have privacy restrictions, developed to protect patients, inadvertently complicated research? This RTI Health Solutions study suggests that creating a single national point of entry and a centralized process is worthy of consideration and could bring greater efficiency to the research approval process.
Read more about this study here.