Association of Cancer Online Resources, Inc.

ACOR-sponsored research privacy policy

Surveys. We may use the information you provided to us at the time of subscription to contact you (directly or through a list-manager) to determine whether you would like to participate in a particular survey or research study. Before deciding to participate in a survey or research study, please consider the potential risks. The survey questions may cause you to reflect on the current state of your physical and emotional health. If this might be too distressing for you please do not participate. We cannot be responsible for any distress that might be caused by the questions or by knowing your scores, to the extent scores are shared with you and cannot help you interpret personal results. Our surveys, however, are typically designed to study populations, not individuals, so medical decisions should not be based on individual results. There could be additional risks of participating that we have not anticipated. Please be aware, that by electing to participate in the surveys or research studies, you are doing so at your own risk.

If you choose to participate in a survey, you may be asked to provide certain additional personally identifiable information or personal health information. We will take reasonable precautions to protect the confidentiality of the personally identifiable information or personal health information your provide us. Please understand that if you choose to participate in a survey, then you are authorizing us to use your personally identifiable information or personal health information for the purposes of cancer-related research and any other purpose that we may disclose to you at the time you elect to participate in the survey.

We may disclose your personally identifiable information or personal health information to other entities who are either assisting us to conduct the surveys or research, or who are providing certain ancillary services related to our provision of the surveys or research. We will use reasonable efforts to disclose to such entities only the minimum amount of personally identifiable information or personal health information necessary for such entities to complete their designated tasks. In addition, we will use reasonable efforts to contractually obligate such entities to take reasonable precautions to safeguard the confidentiality of your personally identifiable health information and to limit such entities' rights to use and disclose your personally identifiable information or personal health information.

We will not disclose your personally identifiable information to anyone except the third parties who partner with us in conducting, or otherwise assist us in conducting the surveys. These third parties will be subject to confidentiality agreements with us that prohibit them from using and/or disclosing your information outside the stated purpose of the survey. We or our survey partners may use the information you provide us in the aggregate in connection with the disclosed purpose of the surveys.

You have the right to revoke your authorization of our ability to use and disclose your personally identifiable information or personal health information. If you decide to revoke your authorization, then you must notify us in writing of your revocation, by sending a letter or email to a representative of the research principal investigator. Please note that we or our partners may continue to use your information after you have revoked authorization if we or are partners have taken action in reliance on your initial authorization. This reliance exception is intended to allow for certain continued uses of the information as appropriate to preserve the integrity of a given research study.

In addition, we may use any de-identified information that you provide us (i.e. information that no longer contains anything personally identifiable) for purposes beyond a specific cancer-related research.

If you have any additional inquiries regarding our surveys or research studies, please contact Research-Info@ACOR.org.

Qualitative Research. From time to time, ACOR may, alone or with another entity or entities perform qualitative research based on the postings to our mailing lists. Accordingly, it is important that you understand that the information you submit to a mailing list may be used by ACOR or its designees as part of ACOR's research efforts. ACOR will take reasonable efforts to ensure that the research based on the mailing lists or archives of the mailing lists is conducted in a manner that de-identifies the author from the content. Nonetheless, as discussed more fully in the section on Writing to the Mailing Lists, you should carefully weigh the potential advantages and disadvantages of participating in a mailing list prior to writing to a mailing list.