Personal Data Notice and Consent

This Personal Data Notice and Consent formdescribes how Informa, Pharma Intelligence , Inc. (“Informa”, “we”, “our” or “us”) may collect, use, share and transfer your personal data (i.e., data that identifies you) in the following circumstances:

• In connection with your participation in online membership communities on our sites that allow you to submit personal data to us, and receive information and updates from clinical research sponsors (“Sponsors”) regarding potential clinical trials for which you may qualify or which may be of interest to you.  Such online membership communities are referred to herein collectively as the “Online Community”; and
• In connection with Informa’s Connect platform on which you may complete an online questionnaire which asks you various questions related to your health, such as various health conditions you may have, medications you may be taking or have taken in the past and/or other relevant information (such questionnaire referred to herein as the “Survey”).  The purpose of the Survey is to determine if you may qualify for certain clinical studies (“Studies”).

Who determines the purposes and means of using your personal data?

Informa determines the purposes and means of using your personal data.  You may contact Informa by completing our online privacy form.  Our Data Protection Officer may also be contacted at  [email protected].

What personal data is collected?  

The following personal data is collected as part of your participation in the Online Community:

• Your basic contact information (including name, email address, postcode and phone number)
• Your date of birth
• Your gender
• Data about your location
• Your demographic information (e.g., data on race/ethnicity)

The following personal data is collected as part of the Survey:

• Your basic contact information (including name, email address, postcode and phone number)
• Your date of birth
• Your gender
• Data about your location
• Your demographic information (e.g., data on race/ethnicity)
• Your preference regarding Study locations, which may include hospitals and medical institutions (“Sites”)
• Data concerning your health, such as health conditions you may have and medications you may be taking or have taken

With whom is personal data shared? 

In connection with the Online Community, Informa will receive your personal data.  Informa does not share your personal data with Sponsors in connection with the Online Community, but Informa does share non-identifiable aggregated data with Sponsors so that that Sponsors may send updates and communications to Online Community members who have opted to receive such communications regarding potential clinical trials which may be of interest.

In connection with the Survey, if your responses to the Survey indicate you are a potential candidate for a Study and you would like to be considered for the Study, you will have the option to provide your contact information and share your Survey answers with Informa and with various Sites.  If you elect to share your personal data with a Site and are contacted directly by a Site, you will receive the name of the Sponsor of the Study for which you are being considered and the Sponsor’s contact details.  Please note that the Sponsor is an organization which separately determines purposes and means of collecting, using and sharing your personal data; as such, the Sponsor may provide you with its own personal data notice, which may include information regarding its data protection officer and how to contact that person.

In connection with the Survey, we also share your personal data:

• with third parties who assist us in providing our products and services and administering our business, such as IT and marketing technology host suppliers, web and data hosting providers, mailing houses, ad servers, sales platform providers and communication tool providers; and
• with companies that are part of Informa’s corporate group.

If you decide that you would not like Informa to share any of your personal data in connection with the Survey, simply exit the Survey without submitting it.  We will retain certain responses, but this data is anonymous.

Why is this personal data collected, used and shared?  

In connection with the Online Community, personal data is collected, used and shared for the following reasons:

• So that Sponsors may send you updates or other communications about clinical trials which may be of interest to you
• So that you may participate in the Online Community
• For operational purposes, including to allow us to review the quality of our services and evaluate the performance of our staff
• As needed for the establishment, exercise or defense of legal claims
• As otherwise required by applicable laws

In connection with the Survey, personal data is collected, used and shared for the following reasons:

• To determine if you may qualify for certain Studies
• So that Sites may contact you directly regarding enrolling in certain Studies (*please note, however, that you are not agreeing to participate in any Study through this Personal Data Notice and Consent form)
• To verify which Studies you enroll in
• To contact you about additional Study recruitment opportunities
• For operational purposes, including for operating our Connect platform and to allow us to review the quality of our services and evaluate the performance of our staff
• To share your enrollment status with recruitment partners through which you were referred, so those recruitment partners can avoid reaching out to you again if you have already enrolled in a Study
• As needed for the establishment, exercise or defense of legal claims
• As otherwise required by applicable laws

How long will the personal data be kept? 

In connection with the Online Community, your personal data will be kept by us for as long as you participate in the Online Community, unless we need to retain your personal data for a longer period to meet our legal requirements or to defend or exercise our legal rights.  In these cases, we will retain your personal data only for the period necessary for us to pursue the relevant purpose.

In connection with the Survey, your personal data (should you choose to provide it to us) will be kept by us for 12 months from collection of the personal data from you, unless we need to retain your personal data for a longer period to meet our legal requirements or to defend or exercise our legal rights. In these cases, we will retain your personal data only for the period necessary for us to pursue the relevant purpose.

What are the grounds for the collection, use and sharing of your personal data?

We collect, use and share your personal data based on the following grounds and as permitted by applicable laws and regulations:

• Your consent;
• Compliance with legal obligations to which we are subject; and
• The establishment, exercise or defense of legal claims

Information about Our Compliance with Australian Privacy Principles

You may find our policy about compliance with Australian Privacy Principles (“APPs”) here: [insert link to policy]  (“APP Policy”).  Our APP Policy describes the following:

• types of personal data we collect and hold;
• sources from which we collect personal data;
• how we store personal data;
• how we protect the security of personal data and manage risks relating to the use of personal data;
• purposes for which we collect, hold, and use personal data;
• how individuals may seek access to or correction of their personal data;
• how individuals may complain if Informa or one of its contractors breach the APPs and our process for handling complaints; and
• information about our disclosures of personal data to overseas recipients.

Requests for Access and Correction

If you would like to make a request for access to your personal data or correction of your personal data, please contact us (see “How can you contact us?” below).  We will make reasonable efforts to honor your request whenever feasible and in all cases we will respond to your request as required by applicable laws and regulations.  In your request, please make clear what personal data your request relates to.

You may also contact Australia’s data protection authority, the Office of the Australian Information Commissioner (OAIC), with any concerns about the collection, use, or handling of your personal data.  You may find information about lodging a complaint with the OAIC here: https://www.oaic.gov.au/privacy/privacy-complaints/.

Are you obligated to provide your personal data to Informa?

You are not obligated to provide Informa with your personal data and the collection of your personal data by Informa is not required by law, however, if you choose not to provide Informa with your personal data this will mean that you cannot participate in the Online Community, receive information about Studies or be connected by Informa to Sites for potential participation in Studies.

Disclosures of Your Personal Data to Overseas Recipients

For purposes of the Online Community and the Survey, Informa intends to transfer your personal data from your country of residence to recipients the United States.  Laws in the United States may differ from those in your country of residence and your personal data may therefore be subject to different legal protections once it is transferred to the United States.  In any event, Informa will use reasonable and appropriate measures to protect your personal data.

How can you contact us?

If you have any questions about this Personal Data Notice and Consent or about the way we use your personal data, or if you would like to submit a request to us, please contact us at [email protected].

I acknowledge that I may withdraw my consent at any time by contacting Informa’s Privacy team via the online privacy form and submitting a request here.