We need different information for different steps of the research process. We need identifying information
only to do patient matching (see section 2.1).
Additionally, we need non-identifying information
only when we are using your health related data to learn more about science or medicine. We will use a software program called MINDFIRL (MINimum Necessary Disclosure For Interactive Record Linkage) to keep identifying information separate from non-identifying information and ensure that no one can access identifying information and non-identifying information together at the same time.
(for MINDFIRL, see sections 2.2 & 2.3)
In many cases, patient matching is done entirely with a linkage software, like MINDFIRL, and a human may never see your identifying information
because the computer is automatically matching patients without human effort. For others records where the computer is not sure, researchers must manually make the matches.
a. Who will be able to see the identifying information?
The researchers who will be doing the record matching will have access to identifying information. Information such as your name, date of birth, marital status, and gender help distinguish you from other people. Our researchers need to access identifying information to match patient records.
We are using the MINDFIRL software (see section 2.2) to protect identifying information and prevent unnecessary privacy loss during this process. First, MINDFIRL separates identifying information from the non-identifying information. This means that, no one can access the identifying information AND the health-related data at the same time.
Second, MINDFIRL tells researchers when two records have the same identifying information without showing details.
In these cases, our researchers might not need to see any specific identifying information to make a match.
MINDFIRL also tells researcher when records are highly similar without showing details.
MINDFIRL shows identifying information only on an ‘as needed’ basis. For example, a researcher might want to see some details to know if a difference is important (e.g, to tell twins apart). This means that MINDFIRL can help catch common matching problems, such as nicknames (e.g., Pam v. Pamela) or typos (e.g., John v. Jonh), without showing the rest of your identifying information. To see how MINDFIRL works with a specific example, see section 2.3.
b. Who will be able to see the Non-identifying information or health-related study data?
The researchers who are doing the main research will be able to see the non-identifying, health-related data. The main research takes place after the patient-matching process and after all identifying information has been removed from the data using the MINDFIRL software. This means that, no one can access the identifying information AND the health-related data at the same time. We will code your non-identifying information to protect your identity. This allows us to use your information to make scientific or medical discoveries without knowing which information belongs to you.