SUNSTONE HEALTH CONSENT TO DATA USE
Terminology:
- “Agreement” means this Sunstone Health Consent to Data Use agreement.
- “Anonymous Database” means the secure computer database of De-Identified Information controlled by SUNSTONE which is separate from the Collected Database.
- “Collected Database” means the secure computer database(s) of Collecting Information controlled by SUNSTONE or your Provider(s).
- “Collected Information” means the information you, your Providers, or a third party on you or your Providers’ behalf send to SUNSTONE, including information that contains your name, address, age, gender, the primary language you speak, health insurance information, and Health Data.
- “Data” means Collected Information and De-Identified Information.
- “De-Identified Information” means Collected Information with Personal Information removed.
- “Health Data” means your medical information provided by you or your Provider, including but not limited to family medical history, test results, diagnoses, medications, immunizations, allergies, etc., and information about your previous, current, or scheduled treatment or procedures.
- “Personal Information” means information by which you may be personally identified, such as name, title, address, e-mail address, telephone number, social security number, date of birth, or financial information.
- “Provider” means any medical professional or other person or entity that is authorized to collect, retain, store, or provide medical information, or any individual authorized to act on behalf of any of the foregoing’s individuals or entities.
- “SUNSTONE” means Sunstone Healthcare.
Background:
Who We Are: SUNSTONE is a company that helps you and your care team better understand your unique health needs. SUNSTONE does this by collecting and storing Collected Information from you and your Providers, removing Personal Information from Collected Information to create De-Identified Information, and organizing and processing De-Identified Information.
Laws Protecting Your Data: Data is protected according to applicable local, state, federal, and international laws and regulations, including the Health Insurance Portability and Accountability Act (HIPAA), the General Data Protection Regulation (GDPR) and California Consumer Protection Act (CCPA).
- Use our research platform.
- Be eligible for free products and services available through SUNSTONE’s partner network; and
- Get access to medical expert opinion pertinent to your specific health needs.
- Your Collected Information is used to contact you about opportunities to participate in research, including clinical trials.
- Your De-identified Information is used for commercial and academic research; and
- Your Data is used to provide you opportunities to continue to learn from your own Collected Information through your SUNSTONE account, and any insights to treatment options for care paths pertinent to your personal health needs.
How Information is De-identified: If you agree to SUNSTONE’s access and use of your Collected Information, SUNSTONE will remove Personal Information from your Collected Information, and store all or part of your De-identified Information in accordance with this consent. Prior to any use of De-identified Information, we will remove Personal Information.
How Data is Stored: SUNSTONE is committed to protecting your privacy. SUNSTONE stores Collected Information in a Collected Database. Only pre-approved authorized people at SUNSTONE will have access to the Collected Database. The Collected Information in a Collected Database will be processed to remove Personal Information, making De-Identified Information. De-Identified Information will be stored and analyzed on the Anonymous Database. SUNSTONE may create a code number that links De-Identified Information in the Anonymous Database to your Collected Information in the Collected Database to permit you to remove your Data.
Genetic Information: If there is genetic information in your health records, SUNSTONE will use, store, and disclose that information only in accordance with federal laws. If you would like more information about how SUNSTONE handles genetic information, you can send an email to info@sunstonehealth.com.
Withdrawal of Consent: You can change your mind at any time about anything to which you are committing when you sign up. If you would no longer like to store your Data with us, you can let us know and we will remove all, or whatever portion you would like removed, of your Data from our database. If you change your mind, you will have two choices: (1) you can stop future Collected Information and De-Identified Information from going in the Collected Database and Anonymous Database, respectively, but continue to let SUNSTONE use what is already in the Collected Database and Anonymous Database, or (2) you could ask SUNSTONE to remove your Data en toto from both the Collected Database and Anonymous Database.
Contact Information:
If you want to stop participating in the TDB research bank, you can contact SUNSTONE by sending an email to info@sunstonehealth.com. If you want to tell your Providers to stop sending your health information to SUNSTONE, please contact them directly.
If you have any questions about this consent, please email info@sunstonehealth.com.
Consent to Access Your Health Information/Participate in Research
Please read this document carefully. If you consent to SUNSTONE’s use of your Data and the terms and conditions set forth herein, please sign this form by clicking "Agree" below.
I hereby authorize and grant SUNSTONE the right to:
- Access, use, collect, and store my Data.
- Remove Personal Information from my Collected Information to create De-Identified Information.
- Apply on my behalf your electronic signature, initials, and identifying information on any additional authorization forms required by my Providers, solely for the purpose of requesting the release of Health Data.
- Submit or organize on my behalf the collection of samples including tissue, blood, device data, etc. to medical products and services for the purposes of additional diagnostics and to collect the output of these services on your behalf, deidentify it, and add it to the Collection Database and/or Anonymous Database.
- Evaluate my ability to participate in future opportunities such as research studies and clinical trials.
- Use my De-Identified Information for research and commercial purposes.
- Provide SUNSTONE’s research partners with access to my Collected Information; and
- Submit my De-Identified Information to research databases for use in scientific and medical research.
I hereby acknowledge and agree:
- SUNSTONE may receive my Data from myself, my Providers and/or third-party partners on behalf of my Providers, and that these partners may require me to agree to terms of service that will pertain to the services that they provide to me and that may give them rights to retain and use my De-Identified Information.
- I am not required to agree to any third-party terms to provide Collected Information, but if I do not agree, I may not be able to utilize the services provided by those partners to provide SUNSTONE with my Collected Information.
- When SUNSTONE provides my De-Identified Information to research partners or research databases, my De-Identified Information may no longer be protected by HIPAA or other federal, state, or local laws, and could possibly be used or disclosed in ways other than those listed in this Agreement.
- The research or studies conducted by SUNSTONE using my De-Identified Information may not help me individually but may help others.
- The Data collected by SUNSTONE may not be my complete medical record.
- If research done with my De-Identified Information uncovers information about my current or future health, such as whether I have a marker for a particular disease (called "Incidental Findings"), my Providers and I will likely not be notified of the Incidental Findings, and those Incidental Findings will not be put into my medical record.
- Any of my results, data, opinion, and other outputs from collections of samples submitted or organized by SUNSTONE may not result in a complete diagnosis or comprehensive assessment of my current medical condition.
- Granting SUNSTONE the rights under this Agreement will not violate any agreement with any third party to which I am a party.
- I can change my mind at any time and discontinue collection of my Data, as set forth in this Agreement, but if SUNSTONE has already provided my De-Identified Information to other researchers prior to me changing my mind, SUNSTONE will not be able to give it back.
- SUNSTONE controls the Collected Database and Anonymous Database.
- SUNSTONE is currently owned by private shareholders and many of SUNSTONE's employees also have an equity interest in SUNSTONE, and SUNSTONE and its employees could benefit from the use of my Data, and I do not have any rights to share in any profits that result from use of my Data.
- Although unlikely, if there is an accidental release of my Data, it may negatively impact my ability to obtain certain types of insurance coverage, my family relationships, or other legal rights.
- My Data is also subject to SUNSTONE’s website Privacy Policy and Terms of Use.
- I am entering into this Agreement voluntarily and will not be compensated for my Data.
I hereby agree to the terms of this Agreement and represent and warrant that:
- I have read and understand all of the terms of this Agreement.
- I am at least 18 years of age.
- If I am not the patient, I am the legal guardian of the patient and have the legal authority to agree to the terms of this Agreement on their behalf.