Effective date: 14 Dec 2018
Thank you for your trust and confidence in Oncoshot. This section highlights the key principles that guide Oncoshot’s policy towards the use and protection of personal and specifically health-related data.
Oncoshot focuses on empowering patients, caregivers and Oncologists to find the most relevant clinical trial information specific to a patient’s unique health status and cancer profile. Oncoshot’s vision is to rapidly identify high-value clinical trials and facilitate pre-screening by trial sponsors and institutes all within our platform. We believe that there is much potential to reduce the time required to obtain high-value, actionable information for the benefit of cancer patients. This potential can only be achieved with the careful and constructive use of individual health information.
Our Guiding Principles:
Any information obtained about a user must enable Oncoshot to perform one of the following:
- Improve the accuracy and relevancy of matching clinical trials identified by Oncoshot’s matching algorithm
- Improve filtering of clinical trial matches
- Enable Oncoshot’s support services to contact and assist users
Individual-level data sharing with Trial Centres/Trial Sponsors is controlled by individual users
- Any contact of Trial Centres/Sponsors is always user-initiated. Invites to Trial Centres/Sponsors that are generated subsequently will reflect basic demographic information such as age and gender but will not include name or health related information.
- Visibility of user-approved health information is available to Trial Sites who are directly involved in performing a medical assessment and eventual enrollment of Oncoshot users into cancer clinical trials.
- Visibility of only anonymised health information is available to Trial Sponsors for Clinical Trials that come directly under their purview.
- The individual patient or user will always be aware that a new trial centre/sponsor is accessing de-anonymised health-related information via encounters created on Oncoshot’s ‘Contact Centre’ [when this tool becomes available].
- Any data sharing between individual users and institutional partners is only correct as of the time of last communication between the individual user and the Trial Centre/Sponsor. Updated patient information is not provided to Trial Centre/Sponsor or other industry partners unless specifically provided by the user.
- Any data sharing between Oncoshot and Trial Centres/Sponsors can only be performed at a broad level wherein healthcare data is anonymised.
- In order to sustain a viable business model centred on patient-initiated and patient-controlled data sharing, Oncoshot reserves the right to charge Industry partners who engage with interested and highly trial-eligible users within our platform.
Effective date: 14 Dec 2018
In summary, the personal health/disease related information we collect helps us to provide the best possible information on clinical trial options for the individual user on our site. Given the nature of the personal data we work with, we pledge to protect your privacy and keep your personal information secure and confidential. The personal information you share with Oncoshot is kept strictly confidential and fully secure unless you, the user, specifically request otherwise.
1. Privacy Officer
Note that for purposes of compliance with the requirements of the General Data Protection Regulation (GDPR), the Oncoshot Privacy Officer also serves as the Data Protection Officer.
2. Information We Collect
We collect information from you in the following manner:
- Non-Personally Identifying Information about visitors to our Sites and Applications
- Personally Identifying Information
- Information you supply when you create an account with user name and password
- Responses to questions you answer in Build Profile
- Your requests to be contacted by us and your interaction with our Clinical Trial Navigators
3. How We Protect Your Information
Oncoshot keeps all your personal information confidential in our secure system. No other user can view or change your information without your Username and Password. Oncoshot puts you, the user, in control of your personal information. You can edit, update or delete information that you have provided by sending an email to email@example.com.
Oncoshot controls all personal data gathered via our Sites. All data is secured in a top-tier secure hosting facility.
Only authorized Oncoshot employees (with special system access controls and passwords) are permitted or able to access your personal information. All Oncoshot employees must abide by our code of conduct, security and privacy policies and those who violate this policy are subject to disciplinary action, up to and including termination.
No method of transmission over the Internet, or method of electronic storage, is 100% secure. Therefore, we cannot guarantee the absolute security of your information. If a breach of your personal information occurs, we will provide notifications as per regulatory requirements. In that event, Oncoshot would no longer have the ability to protect your information. By using our Site and Applications you acknowledge that there is risk that the information you share with us may be compromised, despite our efforts to protect it.
4. How to Request, Update or Delete Your Information
By default, personally identifying information is maintained in our system for three years from your last interaction with our Sites and Applications or our services.
You may Delete your account via the Delete Profile link provided on your user dashboard.You may alternatively Delete your account at any time by sending an email to firstname.lastname@example.org with the subject “Delete My Account”. The latter option will remove your personally identifying information from our database. It will also remove or detach any Patient Profiles you created from identifying information that was in your account.
Existing users can log into their account to review, correct, update or delete inaccuracies to the information in their user account (including updating email address and changing password) and in any saved Patient Profiles. If you are unsure of how to update any of your previously provided information, write to email@example.com for assistance.
5. Personal Profile Information
We use the Personal Profile information that you provide to help you identify high-value clinical trials via our eligibility based matching algorithm.
We may use your responses in a non-personally identifying manner, in aggregate for analysis about patient populations and their activity on our Site. We may share this aggregate, non-personally identifying information with third parties.
You may delete individual Personal Profiles at any time using the “delete” feature in the dashboard page. If you delete your account (which you can do at any time by writing to us at firstname.lastname@example.org), your Personal Profile will also be deleted. Deleted Personal Profiles may still be accumulated in aggregate data analysis.
6. Disclosure to Third Parties
As per our Guiding Principles, Oncoshot may provide your personal information to third parties (such as Trial Centres and Trial Sponsors) in order to assist you in finding a clinical trial that is appropriate for you. This provision of data is always subsequent to your own decision to connect and share your personal information with a third party involved in the clinical trial of interest.
Oncoshot may be required to share your Personal Profile in situations where Trial Centres/Sponsors cannot be directly engaged within the platform. We will then contact such specific third parties with your consent.
Oncoshot may also enclose personal information in a message sent to you through email or regular mail at your request. These messages — which may take the form of a general update or a specific response to your questions — will be sent to the email address or physical location you specify.
Oncoshot may provide non-identifying (aggregate) information about our users to third parties. For example, we might inform third parties about the number of users of our site who are interested in information about a particular disease category, or information about the number of users who live in a particular geographic region. We may also provide aggregate information to entities for the purpose of determining whether additional clinical trials are needed in a particular disease area. Depending on the circumstances, we may or may not charge third parties for the right to access this aggregate information.
Except as provided in this section, Oncoshot will not disclose to unrelated persons or entities any
personal information that you provide to us. Please note that you are responsible for taking all reasonable
steps to ensure that no unauthorized person shall have access to your username and password or Patient Profile.
It is your sole responsibility to:
(1) control the dissemination and use of usernames and passwords;
(2) authorize, monitor, and control access to and use of your usernames and passwords; and
(3) promptly inform Oncoshot of any need to deactivate a username or password.
You grant Oncoshot the right to receive, transmit, monitor, retrieve, store, and use your personal information, including information that may be privileged and confidential under applicable state and federal laws, in connection with the operation of or maintenance of your Patient Profile and account. Oncoshot cannot and does not assume any responsibility or liability related to the accuracy or inaccuracy of the information you provide to us. Oncoshot also cannot and does not assume any responsibility or liability related to your or third parties' use or misuse of information transmitted or received using Oncoshot.
In the following limited circumstances we will consider, and may release personal information to third parties:
(1) as required by law, such as to comply with a subpoena, or similar legal process,
(2) when we believe in good faith that disclosure is necessary to protect our rights, protect your safety or the safety of others, investigate fraud, or respond to a government request, or
(3) if Oncoshot is involved in a merger, acquisition, or sale of all or a portion of its assets, you will be notified via email and/or a prominent notice on our Web site of any change in ownership or uses of your personal information, as well as any choices you may have regarding your personal information.
7. Privacy of Children
Oncoshot does not collect, maintain, store, or disclose personal information about children under the age of 13.
8. Your Consent
By creating a username and password (registering) and filling out a Profile, you grant Oncoshot the right to receive, transmit, monitor, retrieve, store and use your personal information, including information that may be privileged and confidential under applicable state and federal laws, in connection with the operation or maintenance of these features.
Oncoshot cannot and does not assume any responsibility or liability related to the accuracy or inaccuracy of the information you provide to us. Oncoshot also cannot and does not assume any responsibility or liability related to your use or misuse of information transmitted or received on the site.
If Oncoshot decides to materially change how we use personal information or your personal health information, we will notify you by posting a notice on the website, homepage or by sending you an email if you consented to receive email communications from us prior to the changes taking effect.