Communicating With Patients About Software for Enhancing Privacy in Secondary Database Research Involving Record Linkage: Delphi Study

Abstract

Patient Matching is the process of linking records of the same real-world person. Patient matching helps researchers answer difficult questions. For example, is disease treatment A better than treatment B for keeping patients healthy? To do this, we might want to count the number of emergency room visits Jane Doe made this year across several hospitals. This requires linking records from all the hospitals she visited. This is hard because a universal identification number does not exist to easily link records in different systems. Instead, we have to use the personally identifiable information (PII), like social security numbers (SSNs), first & last names, birthdates, race, and gender to decide which records belong to the same person. Still, patient matching is hard. Identifiers are not unique. Different people may share the same name. Names are inconsistent (e.g. nicknames). Data is sometimes missing (e.g. SSNs are often missing). Names change over time (e.g. changing a last name at marriage). Data can have errors (e.g. typos). Let's compare two databases. Which records do you think refer to the same person? This is a Multimedia Appendix to a full manuscript published in the J Med Internet Res. For full copyright and citation information see http://dx.

When is it impractical to ask informed consent? A systematic review

“…In biobank research, obtaining conventional informed consent could become impractical when participants might be harmed when recontacted, since they may feel that their privacy has been violated, or if contacting them can cause social and emotional harm. [29][30][31] One article described the impracticability of asking conventional informed consent for research on women in labor. 37 Obtaining conventional informed consent in this specific type of research becomes impractical when it would mean requesting it from a large number of women, of whom only a small number would actually be eligible for recruitment due to experiencing specific, worrisome circumstances when giving birth.…”

Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

“…With whom: data-sharing practices [59,60,65,90,97,105,106,111,118] • "Well, I did not know how freely they could share the information, that they are actually sharing them with payers. So, something needs to be done with that because • How: sources of funding [95,96], safeguards [34,53,73,103,104,112] we have a right to know where our information is going [...]" (oncology patient [114]). • "I guess, for me I think it's not so much the party accessing the data, but rather how is the data being used for and for what purpose.…”

“…Security breach [31,52,60,103] • "To protect our privacy in a world where we no longer control our data, we must obfuscate health data, penalize the misuse of health data, and improve transparency…”

“…Penalties for misuse [31,39,60,73,77,85,103,111,124,128] around who shares our data and for what purposes" (expert opinion [111]).…”

“…Data linkage [53,83,96,103,132] • Types of data sets [34,62] pects [33,34,38, maintain that type of access, you know, just general [questions]" (patient [40]). 118,120,130,132,133] details on how the data would be transferred.…”