FAQs About Privacy and Security

How does iConquerMS™ ensure my private medical information remains secure?

iConquerMS™ takes your privacy very seriously and has policies and processes in place to safeguard your identity and protect your health data. For instance, only a very limited number of authorized personnel at ACP will have access to your contact information, and this information will never be attached to the health information shared with researchers. Before sharing your health information with researchers, all information that identifies you directly will be removed.

In terms of data security, the iConquerMS™ Project Team takes industry-standard physical and electronic technical precautions to protect the information you share with iConquerMS™.

Who will you share my EHRs with?

Your de-identified data will be shared with qualified researchers who have been granted access, including those from academic, commercial, and government entities. All sharing of health information will be through a process approved by the iConquerMS™ Research Committee.

Are there any risks to sharing my EHR data?

There are risks associated with sharing your EHR; view the informed consent statement for more details about the risks of this study. iConquerMS™ has established policies and processes that are consistent with current standards to minimize these risks and protect your health information.

What if my EHR contains information that I do not wish to share?

If there is information that you do not want to share, you should delete it before uploading your EHR to iConquerMS™. Once an EHR file is uploaded to the iConquerMS™ portal, you will be unable to delete any sections or pages.

How long will the information I've uploaded to iConquerMS™ be available for me to review?

You will be able to see your EHRs as long as the iConquerMS™ initiative continues. If for any reason the portal is discontinued, you will be notified and you will have the opportunity to download your EHR files.

Will iConquerMS™ allow pharmaceutical companies to see my EHR, either alone or in an aggregate?

Researchers from pharmaceutical companies and academic, commercial, and government entities are invited to request de-identified data from iConquerMS™. These requests, like requests submitted by researchers in any sector, are subject to the policies of the iConquerMS™ Research Committee. Decisions will always be made with the best interests of people with MS in mind. The pharmaceutical companies would not see your contact information or any other details which could identify you directly.

What happens to my EHR if I decide to withdraw from iConquerMS™?

If you decide to withdraw from iConquerMS™, your online account will be deleted and you will no longer have access to your EHRs. Any EHRs you uploaded prior to withdrawal may be kept by ACP but not distributed to researchers. Any EHRS that had been shared for research cannot be retrieved from researchers.

If the iConquerMS™ initiative ever ends, will my records be destroyed?

If the iConquerMS™ initiative ends, ACP may retain your records but will no longer distribute them to researchers. Any EHR data that had been shared for research cannot be retrieved from the researchers.

What if I change my mind and want to remove an EHR?

You can choose to delete a full EHR at any time. You can also choose not to share an EHR for research.