Privacy Notice: Caregivers

Version: 1

Effective Date: 14 September 2020

Last Reviewed:  June 2020

This privacy notice is provided by patientprimary (MDE Services Group Limited and its affiliated companies including MDE Healthcare Services Inc. in the USA and MDE Healthcare Services Limited in the United Kingdom)

It should be read by you for you to have a full understanding of how your personal information will be used and stored.

For the purposes of this privacy notice ‘you’ and ‘your’ may refer to the person(s) accompanying the patients who may use the patientprimary services in connection to a clinical study.

The data controller primarily responsible for the personal data collected during the study, is the organization facilitating the study for the patient you are accompanying, otherwise called the study sponsor.

We are facilitating certain services on behalf of the study sponsors which makes us a data processor in respect of your personal data.

We have a legitimate interest in using your personal data since it does facilitate the delivery of the patientprimary services on behalf of study sponsors. Also for you to be able to accompany the patient it is necessary that we use some of your personal information. We may need to use your personal information for other reasons such as us or the sponsor to comply with law. More information can be found below.

For more information about your privacy, you can contact our Data Protection Officer at

The ways we collect information about you:By completing forms submitted by you (such as, the expense claim form & guidelines) or by corresponding with us over the phone or in writing
When contacting our team for support
When liaising with our travel and finance teams regarding your travel, accommodation or reimbursements claims
When using our App or providing feedback about our App
From third parties, e.g. the hospital in charge of the patient you are accompanying (“Site”), the service providers such as local taxis/ambulances, hotels, airlines, home nursing providers, nursing agencies
The categories of information we may collect:Personal information may include:Name, address, gender, date of birth, email address, phone number, emergency contacts, the hospital where you will be going to, any special assistance, dietary requirements, travel preferences, passport information and other identity documents for travel arrangement purposes, bank details/payment information required for reimbursement claims, the feedback you may give us in relation to the services.
Transactions details: information related to your use of the app including: visit details, travel and accommodation requests, dates and times of requests and the service provided, travel related information (location, date, time etc.), the type of reimbursement claims you submit, copies of the receipts, dates and times of claim submissions, the value of the expenses claimed, the status of your claims.
We may also collect personal information about people connected to you, e.g emergency contact details.
We would not collect information about your health.
Information we may collect via our App:If you use our App, we may collect the following information from you: Information about your device such as:
Operating system and version
Unique device identifiers
Information about your activity within the app such as:
Access dates and times
App crashes
Information we collect from third parties:We may collect information from third parties, such as the study sponsor, the Site and the service providers, which may include:
Information communicated by third parties regarding your travel with the patient, such as: visit dates, visit cancellation(s)/postponements, method of reimbursement, payment card details.
Information communicated by the service providers we use to support your travel, accommodation, expense reimbursement claims and/or to facilitate study visits in your home
We may combine the information collected from these sources with other information in our possession.
We may collect and use your information for the following purposes:To provide our services (as described in more detail below)
Security purposes: we may confirm your identity against our records to prevent fraud or identity misuse.
To report to our clients about the services provided to you on their behalf.
To perform internal operations necessary to provide our services including app testing and monitoring.
To comply with our legal obligations and for (external and internal) audit purposes.
Legal proceedings: we may use the information to investigate and address claims or disputes and protect our business interests, hence we may save your data after the end of the study you are taking part in (as described in more detail below).
When we are providing our services, we may use your personal information for the following purposes:To arrange travel and accommodation for you (either through your use of the App or through other communication with us).
To process reimbursement claims and facilitate repayment to you (either through your use of the App or through other communication with us).
To provide you with support when you contact us, including directing your questions to the relevant person and investigating and addressing any concerns you may have.
To liaise with the Site when required in order to support your travel/accommodation arrangements and reimbursements.
We may share the personal information we collect:Within our company group
We may share information within our different offices around the world, where appropriate. For example, the person dealing with your reimbursement claim may need to communicate some of your information to another person in our company (i.e. banking details) for the reimbursement to then be processed
With our clients/sites
We collect your personal information on behalf of the client, and we may share it with them, for example when seeking approval in relation to your reimbursement claim. To assist in maintaining the confidentiality of your information, please ensure that all enquiries about the services we provide are directed to us.
We could be liaising with the hospital regarding patient participation in our services and will therefore be sharing information about you. For example, to confirm when travel is arranged, and accommodation requirements are met.
With business partners and service providers
We may share information with third parties when needed to support the services delivered to you. For example, if you need travel and/or accommodation or expenses to be reimbursed, your personal information will be shared with the travel, airline, hotel provider and/or for expense reimbursements the payment card provider or the home nursing provider if you accompany someone having study visits in their home. We will only do this if there is an agreement in place with the relevant third party to ensure that it protects your information or if we can be confident that your information will be adequately protected.
For legal reasons or in the event of a dispute
To our auditors, lawyers, accountants, consultants and other professional advisors:
where it is reasonably necessary for the purposes of obtaining professional advice or managing legal disputes and risks.
where such disclosure is necessary for compliance with a legal obligation to which we are subject.
For external auditing purposes for example if we were to be audited by a client or a regulatory authority.
We may transfer your personal information outside the country where you live):Within our company group which means our offices based worldwide.
With our selected service providers who may need to have access to your data (such as travel agents, airlines, local transportation provider, payment card provider) to provide the services (i.e. travel arrangements) you may require. Please note that these providers may also store your data outside of your home country where the level of protection may not be as high as you could expect in your home country.
With the study sponsor who is responsible for managing the study in which the participant you accompany takes part.
We will take all reasonable steps to ensure your data is treated securely and check what protection can be given (such as Privacy Shield certification, adherence to the standard contractual clauses provided by the European Commission or if the country is considered adequate for data protection purposes), as well as prevent unauthorized access and misuse of personal data.
How long do we keep your personal information for:We retain your information according to our retention policies unless the applicable legislation requires a longer/shorter retention period. Our retention policies are always subject to applicable laws and are based upon the following criteria:
The duration of the trial in which our services are provided
The need for our organization to protect ourselves from legal claims and use these records as evidence when required
If there is an outstanding issue relating to you
In accordance with applicable laws that we / the study sponsor may be subject to
In accordance with the instructions that are specifically given by the study sponsor
You have rights as a data subject under data protection law, in particular:Right to access
You have the right to request confirmation as to what personal data we process and, where we do, access to that personal data. Providing the rights and freedoms of others are not affected, we will supply you a copy of your personal data. This service and, in particular, the first copy will be provided free of charge, but we reserve the right to charge a reasonable fee to cover administrative charges in the event of manifestly unfounded or excessive requests, or if you request additional copies
Right to rectify/complete your data
You have the right to have your personal data rectified and/or completed (if the data we hold about you is incorrect or needs to be amended in the event of a change of bank details for instance)
Removal of your personal data
Upon your request, and provided that the processing of your personal information is no longer necessary for the services we provide to you on behalf of our clients and subject to applicable laws, you may request your personal data to be deleted. Please note that we will store a copy of your personal information on our servers in order to comply with applicable laws and for the protection of our legitimate interests.
Restrict our use of your personal information
You may request, under certain conditions, our use of your personal data to be restricted
Right to complain about our use of your personal information
You are entitled to complain before the regulatory authority of your home country you are based if you have any concerns about how your personal information may be used We would however appreciate if you could raise any issues or concerns you may have with us first.
You can exercise any of those rights by contacting the patientprimary team or the Data Protection Officer