BCT will never share or sell any personal health information that can be directly connected to you with any individual or organization without your explicit permission.
How does the federal privacy rule (HIPAA) apply to or affect BCT?
In 1996, the U.S. government established national standards to protect the privacy of personal health information, through the Health Insurance Portability and Accountability Act
(HIPAA). The people and organizations that are required by law to adhere to HIPAA privacy standards include health care providers who send patient information electronically, health care clearinghouses, and health plans. BCT does not fit into any of these categories, which means we are not required by law to comply with HIPAA. However, we have chosen to adhere to HIPAA standards because we firmly believe in patient privacy.
Who has access to the Health History I save on your website?
You. When you register with BCT, you create a username and password, which allows you to control who can update or view your Health History. If you use SecureCONNECT, you can give permission to trial sites that belong to the BCT Network to log onto BCT to view your Health History before you speak with them about a specific trial.
Do I have to create a Health History to look for trials for which I might be eligible?
No. You can use our QuickView feature to browse our trials according to tumor or trial type without filling out a Health History Form or providing any personal information. Using QuickViews allows you to search for trials that are geographically close to you, or to look for certain types of trials. However, to use BCT’s personalized Matching Tool, you must complete a Health History Form.
Do I have to save my Health History in order to use the BCT Matching Tool?
No. You can use our Matching Tool as a Guest without saving your Health History. As a Guest, you can view your trial matches, print your trial list, or save your list on your computer as a PDF document without saving your Health History. However, if you don't save your Health History, all of your health information will be permanently deleted when you leave the BCT website. This means you will need to create another Health History the next time you return to BCT.
What do you mean when you describe SecureCONNECT as "secure?"
SecureCONNECT allows BCT members to quickly and easily let research sites know they are interested in a specific trial. When you "send" a message to a research site, BCT does two things: it stores your message on our secure computers and it sends the research site an email letting them know that a BCT member has expressed interest in one of their trials. This email will not reveal anything about you, including your name. To view your message and Health History, an authorized staff person at the research site will have to log onto BCT. Only authorized personnel are permitted to view BCT patient histories.
How does BCT monitor who can view my Health History when I use SecureCONNECT?
A program manager at each research site provides BCT with the email addresses of staff who are authorized to use BCT. Each of these staff members is bound by our Terms and Conditions. Only staff for whom BCT has a valid email address can log on to BCT.
How does your staff monitor SecureCONNECT messages?
In order to assure the quality of our SecureCONNECT program, we routinely monitor when and to whom SecureCONNECT messages are sent, and when they are reviewed. On occasion, we may need to get in touch with you about a specific SecureCONNECT message. Under these circumstances, we will ask our technical staff to provide us with your email address. This is done only to facilitate communication between you and the research site.
How does BCT protect my privacy when it sends me emails about new trials or other messages?
To protect your privacy, any email you receive from BCT will be sent from the address 'bctrials.org' with the subject line message 'from BCTrials.' The words 'breast cancer' and 'clinical trial' are never used in the address or the subject line.
Can I delete my Health History, and what happens if I do?
You can delete your Health History from BCT at any time. You can do this by logging in and then clicking "Delete my information." When you delete your Health History, we will ask if we can use non-identifiable data (such as tumor type and stage) in the summary reports we create about the type of patients who use BCT. If you agree, we will keep the non-identifiable data but erase all of your personal information from our computer system. If you do not want us to use these data, we will delete it along with all of your personal information.
What is “non-identifiable summary data”?
Health information is considered non-identifiable when any information that has the potential to identify the person connected to that data has been removed. BCT makes records non-identifiable by removing any and all information that could connect you to the data. We use this data to generate summary reports about BCT users that tells us, for example, how many patients who use our service are over age 60, how many have had genetic testing, or how many have metastatic disease.
Will BCT ever do anything with my Health History other than match me to trials?
BCT will only share your Health History with research sites of your choosing. We will never share or sell your Health History with any other individual or organization.
How does BCT use summary data?
The BCT team uses summary data to evaluate our site and to report on its usage to potential users, funding agencies, clinical trial sponsors, clinical trial investigators, and members of the research community. We sometimes use summary data in our marketing materials, scientific papers, grant applications, and internal progress reports. For example, we may use a statistic in a report that describes how many patients found at least one trial for which they might be eligible. None of this summary data can ever be traced back to the individual users of our website. We will not share or sell summary data with any individual or organization..
Is there any reason you might release my Health History to a third party?
The only circumstance in which we might release your health information to a third party without your permission is to comply with a valid legal requirement, such as a law, regulation, search warrant, subpoena or court order, or to prevent the serious injury or death of an individual.
Is my Health History secure on BCT’s computers and during the transmission process from my computer to BCT?
Where can I learn more about my health privacy rights?
To learn more about health privacy, we suggest the following websites: