Privacy Notice
22 May 2023
HealthUnlocked Holdings Ltd (“HealthUnlocked” or “We”) and Corevitas LLC (“Corevitas”) are conducting market research with patients (“Research”) on behalf of COMPASS Pathways Ltd (“COMPASS”), a pharmaceutical company.
We treat your privacy seriously and this privacy notice outlines what data we will collect about you and how we may use it.
This privacy notice complies with UK Data Protection law* and with the British Healthcare Business Intelligence Association’s Legal & Ethical Guidelines**.
This privacy notice is specific for this research community and its research events. If you want to know how HealthUnlocked handles data outside this invite-only research community, please refer to HealthUnlocked Privacy Policy and Terms of use
Purpose of the Research
This Research has been designed so that you can share views and experiences (“Insights”) you have had as a person living with Treatment Resistant Depression (“TRD”).
The community will be comprised of people living with TRD who voluntarily join this space to share their experiences via participating in discussion boards and other moderated patient engagement activities, engaging day-to-day with other members of the research online community and through research activities – which may include polls, surveys, patient panels, focus groups, ask me anything events, video storytelling, group live chats, amongst others
COMPASS will use the Insights gathered from research events to better understand the patient journey, living with and receiving treatment for TRD to inform and improve the work that different teams at COMPASS are doing around TRD and its treatments. HealthUnlocked and its parent company Corevitas will use the data from on-going discussion engagements to inform internal research initiatives within the company.
Types of data we collect from you
If you do not pass the screening process, partially complete the screening process, choose not to opt-in, or withdraw consent, the Personal data that we collect in relation to the Research will be deleted within 30 days.
If you pass the screener and agree to take part in the Research, you agree to share 2 (two) types of personal data which can be seen below:
1. Identity Data: the data that you enter when agreeing to be part of the Research and accept the compensation. Your Personal data is information relating to you, an identifiable person, and will include:
a. First name;
b. Email address;
2. Response Data the data you provide:
a. In the initial questionnaire. This includes Personal Data such as race, ethnic origin, sexual orientation, sex life and health (these are called special categories of data “Special Categories”);
b. In the Research: This includes anything that you input in the community, is considered to be Personal Data, and includes tracking your activity in the community, any research activity that you participate in about living with TRD.
How We use the data We collect?
HealthUnlocked will use the Personal Data detailed in 1, above, to:
1. Contact you in relation to this Research.
2. Process any payments related to this Research.
3. Invite you to participate in HealthUnlocked and/or COMPASS future opportunities related to TRD, outside this research community unless you choose not to opt in.
HealthUnlocked and COMPASS will use the Response Data detailed in 2, above, to:
Analyse the Insights to better understand the patient journey, living with and receiving treatment for Treatment Resistant Depression (TRD).
Share de-identified data with COMPASS related to research events such as surveys, focus groups and one-off-questions posted in the community space.
Review aggregated data to ensure COMPASS achieves a balance of different people, with differing health profiles, to make sure the research can be as effective as possible.
COMPASS will not receive any data from the on-going discussion engagements that are held within the private research community nor will have access to the community forum. HealthUnlocked and its parent company Corevitas will use the data from on-going discussion engagements to inform internal research initiatives within the company.
Where HealthUnlocked asks you to take part in additional research initiatives, outside the ones listed in the consent and where you might be personally identified by COMPASS (eg: video roundtables), we will always ask for your consent.
Right to Access & Withdraw data
1. You have the right to refuse to answer any questions, withdraw from the research community and have all your personal data deleted from the research community at any time. To do this, please contact us on trd@healthunlocked.com
2. You have a right under the General Data Protection Regulation 2016 and the UK General Data Protection Regulation 2018 (GDPR) to request access to your Personal Data (which will be free of charge but under very limited circumstances we may need to charge a fee) to correct any inaccuracies. If you would like to access, correct or delete the Personal Data we hold about you please contact us at trd@healthunlocked.com.
Who we may share your Data with or disclose your Data to:
Your Personal Data will only be accessible to HealthUnlocked and COMPASS in the manner described above for the purpose of processing your compensation and delivering this Research.
We use third party providers with servers based in the European Economic Area (EEA). Your de-identified Response Data will be shared with CorEvitas researchers, who are based in the USA and may be outside your country of residence. Your de-identified Response Data will only be shared with CorEvitas for the purpose of analysing and reporting on the Insights received. We will ensure that it is kept secure and technical and administrative safeguards are in place at all times***.
Your Data may be shared for adverse event or product complaint reporting
HealthUnlocked encourages a supportive and safe culture, implementing best practices for a moderated community. There may be exceptional circumstances where we are required by law to make a disclosure of your personal information to certain authorities, for example where information provided suggests an ongoing or potential threat of suicide or threat against a child or vulnerable person. We may notify you first, unless we are legally prohibited from doing so.
This project is not intended to discuss medication (prescription and non-prescription drugs). However, if medications are mentioned in your Responses in a positive or negative way, HealthUnlocked and CorEvitas may share this Response Data with COMPASS.
HealthUnlocked may also report any individual Adverse Event or Drug Safety information obtained via your Responses to local regulatory bodies. We do not provide your Personal Data to such regulatory bodies, although we reserve the right to contact you for follow-up at the request of regulatory bodies via email as provided.
Do you have any questions about this Privacy Notice?
HEALTHUNLOCKED
If you have questions or comments about this privacy notice, please contact us at:
Email: trd@healthunlocked.com
Address: 3rd Floor, 1 Ashley Road, Altrincham, Cheshire, UK WA142DT
If you have any questions, comments or complaints on how HealthUnlocked use your personal data relating to this privacy notice, please contact our DPO, Owen Brady, at: privacy@healthunlocked.com. You can read our privacy notice here
If you have made a complaint and are still unhappy about the way HealthUnlocked has handled your complaint about the use of your data, you have the right to complain to the Information Commissioner’s Office (UK Citizens only).
Website: https://ico.org.uk/make-a-complaint/
Phone: 0303 123 1113
COMPASS
If you have any questions, comments or complaints on how COMPASS use your personal data relating to this privacy notice, please contact dpo@compasspathways.com. We have also created a web-based privacy notice at https://compasspathways.com/privacy/ .
If you have made a complaint and are still unhappy about the way COMPASS have handled your complaint about your use of your data, you have the right to complain to the Information Commissioner’s Office (UK Citizens only)
Website: https://ico.org.uk/make-a-complaint/
Phone: 0303 123 1113
COMPASS do not have an office based in the European Economic Area (EEA) and therefore further to the requirements of GDPR we have appointed a European representative. If you are a citizen of an EEA member state you can contact them by emailing datarequest@datarep.com quoting <COMPASS Pathways> in the subject line or by accessing their online form at www.datarep.com/data-request.
**https://www.bhbia.org.uk/guidelines-and-legislation
***For more information about HealthUnlocked’s and Corevitas’s privacy policies, please see: https://support.healthunlocked.com/article/148-privacy
