Patient-selected privacy controls
Patients choose settings, track use of info
When a patient clicks on a link from the Web site of an organization such as KS&A to express an interest in participating in medical research, it sets off a chain of questions and choices that help that patient tailor the security to his or her own preferences.
Here's how it works, according to Robert Shelton, co-founder and CEO of Private Access, an Irvine, CA-based technology company that has created the platform for the registry:
Patient John Smith clicks on a link on the KS&A Web site to express either general interest in research or interest in a specific study. Smith is taken to another site, linked to KS&A but powered by Private Access. There, Smith can register, choosing a login and password, as well as answer several security questions so that someone else cannot later sign in as Smith.
He is directed to a page that guides him through the process of choosing security settings. Smith is shown different choices for levels of security:
One is for someone who isn't that concerned about privacy issues. The system would recommend settings that allow researchers vetted by KS&A to contact Smith directly, using his name and e-mail address. Other researchers would be able to contact Smith anonymously, sending him a blind e-mail explaining their work. If he chooses, he could divulge his name to them.
One is for someone who has strong privacy concerns. In this case, the system recommends settings that would allow no researcher to contact Smith directly, requiring blind e-mails to be sent to him by any researcher interested in working with him. Researchers who are not associated with or vetted by KS&A wouldn't even be able to see Smith's information anonymously.
Smith can change individual settings to personalize his choices further. For example, if he is responding to a particular study posted on the KS&A Web site, he can allow that researcher to contact him directly, but require other researchers to contact him anonymously. Or, if he signs up for a particular study, he can change his settings so that no one else can contact him until he changes them back.
After choosing his security settings, he answers a detailed health questionnaire, which includes questions of particular interest to researchers who deal with KS&A, an organization devoted to helping people with extra X and/or Y chromosomes.
When researcher Jane Jones uses a Private Access search engine called Recruit Source, she can run searches looking for people like Smith, based on demographics, medical characteristics, and location. If Smith turns up in one of these searches, depending upon his security settings, she can either see his name and contact information or an anonymous patient ID number. Clicking on the ID number would send an e-mail alert to Smith, who may either release his contact information, decline to be contacted, or send an e-mail to Jones anonymously asking for more information.
Jones also can set a search that informs her if new people register with Private Access who meet her criteria.At any point, Smith can look at an audit log regarding his information to see who has accessed it.
Shelton says the Private Access system also takes into account applicable federal and state laws in displaying information to researchers. For example, if an anonymous patient lives in a city of less than 20,000, only a portion of the person's zip code will be revealed, in accordance with the HIPAA Privacy Rule.
When a patient clicks on a link from the Web site of an organization such as KS&A to express an interest in participating in medical research, it sets off a chain of questions and choices that help that patient tailor the security to his or her own preferences.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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