At DKMS, we are committed to treating and using health information we may gather about you responsibly. This Notice of Privacy Practices (this “Notice”) describes the personal and health-related information we collect, and how and when we use or disclose that information. It also describes your rights with respect to such information. This Notice was last updated on May 26, 2020.

Understanding your health record/information

DKMS does not provide any medical services; however, we recruit healthy volunteers as potential hematopoietic stem cell (HPC) donors, and we facilitate medical services for the donation process. The information we gather helps hospitals that treat patients with life threatening blood diseases make treatment decisions for their patients. Our marketing and field-based recruitment teams may store and use information about patients and families with whom they have relationships, for example in connection with follow-up stories regarding those patients. Such information will only be used in accordance with the terms of this Notice. DKMS considers those who register to be potential donors to be “registrants,” and those who begin any part of the donation process to be “donors.” As a registrant, we obtain information from you such as your name, date of birth, gender, social security number, address, telephone numbers, email address, ethnicity and ancestry, family contact information and banking information (if you decide to donate to our cause). DKMS stores this information, and may share such information amongst its affiliated entities, some of which may be located outside of the United States. As a donor, each time you visit a doctor, hospital, laboratory, or any other health care provider, a record of your visit is made. Typically, this record contains your name, age, gender, address, telephone number, symptoms, examination and test results, and, if needed, a diagnosis, treatment, and plan for future care. Additionally, we store basic information about transplant recipients that is needed to facilitate HPC donations. This information, often referred to as your health or medical record, serves as a:

• Basis for planning your donation in a way that minimizes donor risk, and delivering HPC products to benefit transplant recipients.
• Means of communication among the many health professionals who contribute to your care and the treatment of patients.
• Legal document describing the care you received.
• Means by which you, DKMS, or a third-party payer can verify that services were actually provided.
• A source of data for medical research.
• A source of information for public health officials as required by local or federal law.
• A source of data for our planning and marketing.
• A tool with which we can assess and continually work to improve the care we render and the outcomes we achieve.

Understanding what is in your record and how your health information is used helps you to: ensure its accuracy, better understand who, what, when, where, and why others may access your health information, and make more informed decisions when authorizing disclosure to others.

Your health information rights

Although the health records that we compile are the physical property of DKMS, the information belongs to you. You have the right to:

• Obtain a paper copy of this Notice upon request.
• Inspect and copy your health record.
• Amend your health record.
• Obtain an accounting of disclosures of your health information.
• Request communications of your health information by alternative means or at alternative locations.
• Request a restriction on certain uses and disclosures of your information.
• Revoke your authorization to use or disclose health information except to the extent that action has already been taken.

You may contact us at info@dkms.org if you have questions about or would like to exercise any of the above-listed health information rights.

Our responsibilities

DKMS is required to:

• Maintain the privacy of your health information.
• Provide you with this Notice as to our legal duties and privacy practices with respect to information we collect and maintain about you.
• Abide by the terms of this Notice.
• Notify you if we are unable to agree to a requested restriction or amendment you requested.
• Accommodate reasonable requests you may have to communicate health information by alternative means or at alternative locations.

We reserve the right to change our practices and to make the new provisions effective for all protected health information we maintain. Should our information practices change, an updated Notice will be posted at this URL. We will also mail a revised Notice to the address you’ve supplied us, or if you agree, we will email the revised Notice to you. You understand that such updated information practices will apply to information we have already collected from you.

We will not use or disclose your health information without your authorization, except as described in this Notice. We will also discontinue using or disclosing your health information after we have received a written revocation of the authorization according to the procedures included in the authorization.

For more information or to report a problem

If you have questions and would like additional information, you may contact the DKMS Privacy Officer at 212-209-6773 or at info@dkms.org. We are located at 100 Broadway, NY, NY, 10005.

For our privacy policy regarding collection and use of data relating to the DKMS website, please see here.

If you believe your privacy rights have been violated, you can file a complaint with DKMS’s Privacy Officer or with the Office for Civil Rights, U.S. Department of Health and Human Services. There will be no retaliation for filing a complaint with either the Privacy Officer or the Office for Civil Rights. The address for the OCR is listed below:

Office for Civil Rights U.S. Department of Health and Human Services 200 Independence Avenue, S.W. Room 509F, HHH Building Washington, D.C. 20201.

Examples of disclosures for treatment, payment and health operations

We will use your health information for treatment.

For example: Information obtained by a nurse, physician, or other member of the donation team at an accredited healthcare facility will be recorded in your medical record and used to manage the donation process. This information is vital to several entities involved in the donation process, and to ensure the best treatment to patients in need of transplant.

We will use your health information for payment.

For example: DKMS covers all donation-related medical expenses; as a donor you will not be responsible for the payment of any bills issued for services provided. However, the information on a bill may include information that identifies you, as well as diagnosis codes, procedures, and supplies used.

We will use your health information for regular operations.

For example: Members of the DKMS staff may use information in your health record to assess your case. This information will then be used in an effort to continually improve the quality and effectiveness of the services we provide.

Third Parties: There are some services provided in our organization through contracts with third parties. Examples include: physician services, health care agencies, laboratories, document storage and shredding companies. When these services are contracted, we may disclose your health information to such third parties so that they can perform the job we’ve asked them to do. To protect your health information, we require that the third party appropriately safeguard your information and we have contracts in place that specify their obligation to our company.

Research: We may disclose information to researchers when their research has been approved by an institutional review board that has reviewed the research proposal and established protocols to ensure the privacy of your health information. You do have the right to refuse to participate in research.

Marketing: We may contact you to provide invitations to various events that we coordinate, in an effort to continue to grow and maintain our organization and our mission. Additionally, if authorized, we may use your name, likeness and personal story in activities related to raising public awareness of, and funds for, DKMS. You will not receive any monetary compensation from DKMS for authorizing the use of your name, photograph, likeness and personal story and any reimbursement for expenses will be arranged separately. If you should no longer wish to have your image appear in our materials, please contact DKMS immediately. Due to the distribution and printing guidelines, DKMS may not be able to remove your image immediately from its materials, but will do so as soon as those printed pieces are scheduled for reprinting. Please note that print materials already distributed to public audiences may not be recalled once distributed.

Fundraising: As a nonprofit organization, we may contact you as part of a fundraising effort. You may decide to contribute to our cause, and whether you contribute in person, online, or via mail, we will never share your personal information.

Food and Drug Administration (FDA): We may disclose to the FDA health information related to adverse events that might be associated with the donation process. Public health: As required by law, we may disclose your health information to public health or legal authorities charged with preventing or controlling disease, injury, or disability.