Table of Contents
- Key Definitions
- Collection of Data about You
- Your Choices and Data Sharing
- Data Use and Sharing
- Access to Your Data
- Editing, Annotating, and Deleting Your Data
- Business and Professional Users
- California “Do Not Track” Disclosure
- Contact Us
- Effective Date
SHARE For Cures is a website for motivated individuals who choose to collect and share their health and other information with researchers in order to accelerate the search for biomedical treatments and cures.
SHARE For Cures runs on our SHARE platform (System for Health And Research Data Exchange). Using the SHARE platform, individual users can import their medical information from the electronic health records of their doctors and other providers, save it to their account, and share it with researchers. Users can also import health, wellness, and lifestyle data from apps and medical devices, laboratories, and social media sources. Users will have numerous choices about what data they decide to import and share. You can share as much or as little of your information as you like.
This Privacy Statement explains how SHARE For Cures handles and protects your information. It does not address how your information may be protected, used, or disclosed by any researchers or other recipients with whom you choose to share it.
- “Anonymized Data” means the de-identified Personal Health Data (see below) of users from which direct identifiers, such as name, email address, address, phone, etc., have been removed. (By default, data you share will be Anonymized Data, unless you choose otherwise.)
- “Profile Data” means personally identifiable information you provide when you create your SHARE For Cures account (including information a social media site passes to us if you choose to create your account using your social media credentials instead of setting up new ones here.)
- “Personal Health Data” means personally identifiable information that you choose to import from various sources or otherwise enter into your SHARE For Cures account. This can include information submitted by the electronic health records of certain hospitals, doctors, or other medical providers authorized by you, as well as sources including fitness and wellness apps, sensors and devices, self-entered data, and social media accounts. We refer to these sources of your information as Data Sources.
- “Research Data” is your Personal Health Data that you choose to share with researchers or other recipients, which we refer to as Data Recipients. By default, the Research Data you share will be Anonymized Data, although you can choose to make it personally identifiable if you wish.
1. Data Collected from All Visitors to our website
As background, cookies are small text files that websites can send to your browser to be stored in your computer, which can automatically collect server domain names, IP addresses, type of computer, type of browser, and information about what pages are visited. You can set your browser to decline cookies or notify you before accepting them, although that may affect website performance. Web beacons are small bits of code embedded in web pages or emails that can be used to communicate with cookies, count visitors, and understand usage patterns.
2. Data Collected from Users Who Create a SHARE For Cures Account
When you create a SHARE For Cures account, you may be asked for certain Profile Data such as your name, email address, address, phone, etc. Only your name and email address will be necessary to create your account. It is important that you provide accurate information to facilitate our communications with you. You will also create a password.
You can also choose to create an account using certain social media credentials, such as those from Facebook, Google +, or Twitter. If you do so, those social media accounts will share with us your username on their services and may also share certain demographic information about you. If you use this method, the information shared by the social media site becomes part of your Profile Data.
We may supplement or modify certain data submitted by our users, such as by using software to update street addresses or software to convert from one medical coding system to another to standardize the data received.
SHARE For Cures gives you important choices about your Personal Health Data – whether to share it, how much, and with whom. You should not share any information that you feel uncomfortable sharing. We encourage you to make these choices thoughtfully. Your choices will include:
- When you create an account, whether you want to give us only the required Profile Data (name and email address) or additional optional information about yourself;
- Which Data Sources you want to link to your account to import Personal Health Data into your account;
- How much Personal Health Data you want to share with which Data Recipients;
- Whether you want your shared Research Data to be linked to your name or other personal information for particular Data Recipients (by default, your shared Research Data will be de-identified with personal identifiers removed);
- Whether you want to be contacted by SHARE For Cures about particular studies or opportunities you may be interested in, which may be on behalf of Data Recipients;
- Whether you want to participate in surveys we may offer from time to time. The nature of the survey will be explained to you in advance.
- Whether you want to participate in any other data-sharing opportunity we may offer. Any such opportunity would be clearly explained to you in advance, and whether you decide to share your Personal Health Data would be entirely up to you.
- Whether to discontinue all or part of data sharing or whether to close your account. However, any data that was shared prior to me discontinuing sharing or closing my account cannot be taken back and is not subject to revocation.
- We will fulfill directions you give us about sharing your Personal Health Data with the Data Recipients you select (that is, your “Sharing Preferences”).
- We will maintain your data in our platform and will use your Profile Data to communicate with you about your account or our services.
- Where needed to run our organization, we will share all types of data with certain third parties (such as technology vendors), subject to appropriate contractual controls over how they protect, use, and disclose the data.
- Internally, we may run analytics and do research on users’ data in the SHARE platform, and we may disclose results or insights from that research publicly or with third parties. However, we will not disclose your personally identifiable data unless you consent using your Sharing Preferences.
- We may create, use, and disclose aggregated, statistical data about our users. This means that the data will have been Anonymized (see Definition above) and the data will be aggregated (grouped) with similar data from other users. This aggregated, statistical data about our users may be disclosed publicly or to third parties. For example, we might let a cancer research organization know that we have a specified number of users with a particular kind of cancer.
Sharing with Data Recipients
The reason SHARE For Cures exists is to allow individuals to share useful data about themselves with researchers in order to accelerate treatments and cures for diseases.
- You control what Research Data you share and with whom. Your choices, which you’ll set in your Sharing Preferences, may include:
- (a) Sharing your name or other personal identifiers with specified Data Recipients or researchers working on a particular condition;
- (b) Giving SHARE For Cures permission to contact you about additional clinical trial or similar studies.
- After you’ve chosen to share your Research Data, you can change your mind at any time and tell us to stop sharing your data, and we will promptly honor your choice. However, your withdrawal of consent would not affect any data already shared before the change was processed.
Privacy Considerations – even when personal identifiers like names, etc. have been removed from data, the more detailed the data is about an individual, the greater the possibility that it could be re-identified or linked back to that individual. Therefore, please evaluate carefully any possible risks to your privacy as you make choices to share your data through Share For Cures.
Sharing for Marketing Purposes
- We will not disclose your Personal Health Data or Profile Data to third parties for marketing purposes, unless you specifically and explicitly consent.
- If you did consent to this, you could withdraw your consent for such future disclosures at any time, although that withdrawal would not affect any data shared before the change was processed.
Unusual Disclosures We Might Make Without Your Consent
- We will disclose information based upon a reasonable belief that the disclosures are required by law, including information requested via subpoenas and court orders.
- We may report what appears to be illegal or fraudulent conduct to law enforcement authorities.
- We may disclose information if we reasonably believe the disclosure is needed to respond to a threat of physical harm or to defend or assert legal rights.
- If we were to transfer assets or operations in connection with a sale, merger, bankruptcy, or other transaction, we may transfer personally identifiable information to the merging or acquiring entity. If so, we would make a good faith effort to require that your personally identifiable information remains subject to essentially the same restrictions as in our Privacy Statement.
We will only disclose personally identifiable information about you in the ways we explain here.
You can view the data you’ve had imported into your active SHARE For Cures account once your account is updated. If you submitted information to us in any way other than through the website, we will make commercially reasonable efforts to give you access to your information upon request.
If you wish, you can edit, annotate (that is, insert a clarifying note), or hide particular parts of your data in your account. However, in order to keep an accurate and consistent audit trail of medical records that were imported into your account, the SHARE system does not allow users to permanently delete particular items from the underlying SHARE platform. The SHARE platform will maintain an audit log of all changes to the data in your account.
If you close your SHARE For Cures account, all of your data will become immediately inaccessible by you and it will no longer be shared with Data Recipients. If data has been irreversibly de-identified and combined with other de-identified data, it would not be possible to prevent it from being shared for research.
Of course, if you have already shared Research Data with Data Recipients through your Sharing Preferences, the information will persist in their records. We do not have access to or control over anything you choose to share with Data Recipients.
We are committed to maintaining the security of our users’ information. Your personal medical information will be protected pursuant to standard security measures. If we share personally identifiable information with vendors, we subject them to strict contractual and legal controls regarding the protection, use, and disclosure of the information. If we share Anonymized Data with Data Recipients, we will contractually require them to keep it in anonymous form and forbid them to make any attempt to re-identify the data or allow others to do so.
There is always some risk to the security of information, including the risk that unauthorized, wrongful, or illegal access could occur or that data sent to or from your account over the Internet could be intercepted. We thus cannot warrant or guarantee data security. We urge you to take strong precautions to protect your password.
At this time, children under the age of 18 cannot create SHARE For Cures accounts. We do not knowingly collect any personal data from children under the age of 18.
This Privacy Statement describes the way that personal data of individual users is protected and handled. Professionals and organizations doing business with SHARE For Cures should review any applicable contractual or legal requirements.
California recently enacted a law requiring websites to explain certain online practices regarding tracking of visitors. Some web browsers have a “Do Not Track” feature that lets a user have the browser notify websites that the user does not want to have his or her online activities tracked. Our website currently does not respond to such browser-initiated signals.
The current version of the Privacy Statement will be dated and posted here.
This Privacy Statement is effective October 16, 2016.