TrialsConnect

Privacy and Cookies Policy

1.Introduction

1.1We are committed to safeguarding the privacy of our website visitors, patient volunteers and event participants.

1.2This policy applies where we are acting as a data controller with respect to the personal data of our website visitors, patient volunteers and event participants; in other words, where we determine the purposes and means of the processing of that personal data.

1.3We use cookies on our website. Insofar as those cookies are not strictly necessary for the provision of our website and activities, we will ask you to consent to our use of cookies when you first visit our website.

2.How we use your personal data

2.1In this Section 2 we have set out:

(a)the general categories of personal data that we may process;

(b)in the case of personal data that we did not obtain directly from you, the source and specific categories of that data;

(c)the purposes for which we may process personal data; and

(d)the legal bases of the processing.

2.2We may process data about your use of our website and services ("usage data"). The usage data may include your IP address, geographical location, browser type and version, operating system, referral source, length of visit, page views and website navigation paths, as well as information about the timing, frequency and pattern of your service use. The source of the usage data is Attracta (www.attracta.com). This usage data may be processed for the purposes of analysing the use of the website and services. The legal basis for this processing is our legitimate interests, namely monitoring and improving our website and services.

2.3We may process your personal data that are provided in the course of involvement in our activities and the use of our services ("service data"). The service data may include name and contact details, date(s) of participation in named activities, data specifically supplied in the course of activities. The source of the service data is you. The service data may be processed for the purposes of operating our website, providing our services, ensuring the security of our website and services, maintaining back-ups of our databases and communicating with you. The legal basis for this processing is our legitimate interests, namely the proper administration of our website and the aims of our organisation.

2.4We may process information that you provide for publication on our website or through our services ("publication data"). The publication data may be processed for the purposes of enabling such publication and administering our website and services. The legal basis for this processing is consent.

2.5We may process information relating to transactions, including purchases of our goods and services including free downloads, that you enter into with us and/or with Eventbrite (www.eventbrite.com) and/or with Vimeo(www.vimeo.com) through our website ("transaction data"). The transaction data may include your contact details and the transaction details. The transaction data may be processed for the purpose of supplying the goods and services and keeping proper records of those transactions. The legal basis for this processing is the performance of a contract between you and us and/or taking steps, at your request, to enter into such a contract and our legitimate interests, namely the proper administration of our website and the aims of our organisation.

2.6We may process information that you provide to us for the purpose of subscribing to our email notifications and/or newsletters ("notification data"). The notification data may be processed for the purposes of sending you the relevant notifications and/or newsletters. Relevant notifications may include communications on behalf of other organisations with which we are formally associated through Patient Powerhouse UK (c/o William Harvey Clinical Research Centre, Charterhouse Square, London EC1M 6BQ). The legal basis for this processing is consent.

2.7We may process information contained in or relating to any communication that you send to us ("correspondence data"). The correspondence data may include the communication content and metadata associated with the communication. Our website will generate the metadata associated with communications made using the website contact forms. The correspondence data may be processed for the purposes of communicating with you and record-keeping. The legal basis for this processing is our legitimate interests, namely the proper administration of our website and our organisation and communications with users.

2.8We may process ("clinical research patient story data"). This data may include name or pseudonym, name of clinical trial, personal detail supplied in relation to trial participation. The source of this data is yourself as a volunteer patient. This data may be processed for the legitimate aims of our organisation. The legal basis for this processing is informed consent.

2.9We may process any of your personal data identified in this policy where necessary for the establishment, exercise or defence of legal claims, whether in court proceedings or in an administrative or out-of-court procedure. The legal basis for this processing is our legitimate interests, namely the protection and assertion of our legal rights, your legal rights and the legal rights of others.

2.10We may process any of your personal data identified in this policy where necessary for the purposes of managing risks, or obtaining professional advice. The legal basis for this processing is our legitimate interests, namely the proper protection of our organisation against risks.

2.11In addition to the specific purposes for which we may process your personal data set out in this Section 2, we may also process any of your personal data where such processing is necessary for compliance with a legal obligation to which we are subject, or in order to protect your vital interests or the vital interests of another natural person.

2.12Please do not supply any other person's personal data to us, unless we prompt you to do so.

3.Providing your personal data to others

3.1We may disclose your personal data to the William Harvey Clinical Research Centre, Charterhouse Square, London EC1M 6BQ insofar as reasonably necessary for the purposes, and on the legal bases, set out in this policy.

3.2We may disclose your personal data to professional advisers insofar as reasonably necessary for the purposes of managing risks, or obtaining professional advice.

3.3In addition to the specific disclosures of personal data set out in this Section 3, we may disclose your personal data where such disclosure is necessary for compliance with a legal obligation to which we are subject, or in order to protect your vital interests or the vital interests of another natural person. We may also disclose your personal data where such disclosure is necessary for the establishment, exercise or defence of legal claims, whether in court proceedings or in an administrative or out-of-court procedure.

4.International transfers of your personal data

4.1In this Section 4, we provide information about the circumstances in which your personal data may be transferred to countries outside the European Economic Area (EEA).

4.2The hosting facilities for our website are situated in the United States of America. Transfers will be protected by appropriate safeguards, a copy of which you can obtain from Machighway.com (https://www.deluxe.com/sites/deluxe.signupserver.com/files/pdf/Deluxe-Article-28-Data-Processing-Addendum.pdf)

4.3Video hosting (Vimeo) and event ticketing (Eventbrite) data may be situated in the United States of America. Transfers to each of these suppliers will be protected by appropriate safeguards, copies of which can be obtained from https://vimeo.com/privacy and https://www.eventbrite.com/support/articles/en_US/Troubleshooting/eventbrite-privacy-policy?lg=en_US respectively.

4.4You acknowledge that personal data that you submit for publication through our website or services may be available, via the internet, around the world. We cannot prevent the use (or misuse) of such personal data by others.

5.Retaining and deleting personal data

5.1This Section 5 sets out our data retention policies and procedure, which are designed to help ensure that we comply with our legal obligations in relation to the retention and deletion of personal data.

5.2Personal data that we process for any purpose or purposes shall not be kept for longer than is necessary for that purpose or those purposes.

5.3We will retain your personal data as follows:

(a)usage, service and transaction data will be retained for a minimum period of one year following collection, and for a maximum period of two years following the end of January in the year of collection.

(b)correspondence and notification data will be retained for a minimum period of one year following collection, and retained for a maximum period of two years following the end of January in the year of notice of unsubscription.

(c)publication and clinical research patient story data will be retained for a minimum period of one year following collection, and for a maximum period of two years following the end of use on website, end of use in activities, or upon the withdrawal of consent to publication.

5.4In some cases it is not possible for us to specify in advance the periods for which your personal data will be retained. In such cases the period of retention of data in use for the legitimate activities of the organisation will be determined based on specific informed consent.

5.5Notwithstanding the other provisions of this Section 5, we may retain your personal data where such retention is necessary for compliance with a legal obligation to which we are subject, or in order to protect your vital interests or the vital interests of another natural person.

6.Security of personal data

6.1We will take appropriate technical and organisational precautions to secure your personal data and to prevent the loss, misuse or alteration of your personal data.

6.2We will store all your personal data on secure servers, secure desktop computers and in secure manual record-keeping systems.

6.3You acknowledge that the transmission of unencrypted (or inadequately encrypted) data over the internet is inherently insecure, and we cannot guarantee the security of data sent over the internet.

7.Amendments

7.1We may update this policy from time to time by publishing a new version on our website.

7.2You should check this page occasionally to ensure you are happy with any changes to this policy.

8.Your rights

8.1In this Section 8, we have summarised the rights that you have under data protection law. Some of the rights are complex, and not all of the details have been included in our summaries. Accordingly, you should read the relevant laws and guidance from the regulatory authorities for a full explanation of these rights.

8.2Your principal rights under data protection law are:

(a)the right to access;

(b)the right to rectification;

(c)the right to erasure;

(d)the right to restrict processing;

(e)the right to object to processing;

(f)the right to data portability;

(g)the right to complain to a supervisory authority; and

(h)the right to withdraw consent.

8.3You have the right to confirmation as to whether or not we process your personal data and, where we do, access to the personal data, together with certain additional information. That additional information includes details of the purposes of the processing, the categories of personal data concerned and the recipients of the personal data. Providing the rights and freedoms of others are not affected, we will supply to you a copy of your personal data. The first copy will be provided free of charge, but additional copies may be subject to a reasonable fee.

8.4You have the right to have any inaccurate personal data about you rectified and, taking into account the purposes of the processing, to have any incomplete personal data about you completed.

8.5In some circumstances you have the right to the erasure of your personal data without undue delay. Those circumstances include: the personal data are no longer necessary in relation to the purposes for which they were collected or otherwise processed; you withdraw consent to consent-based processing; you object to the processing under certain rules of applicable data protection law; the processing is for direct marketing purposes; and the personal data have been unlawfully processed. However, there are exclusions of the right to erasure. The general exclusions include where processing is necessary: for compliance with a legal obligation; or for the establishment, exercise or defence of legal claims.

8.6In some circumstances you have the right to restrict the processing of your personal data. Those circumstances are: you contest the accuracy of the personal data; processing is unlawful but you oppose erasure; we no longer need the personal data for the purposes of our processing, but you require personal data for the establishment, exercise or defence of legal claims; and you have objected to processing, pending the verification of that objection. Where processing has been restricted on this basis, we may continue to store your personal data. However, we will only otherwise process it: with your consent; for the establishment, exercise or defence of legal claims; for the protection of the rights of another natural or legal person; or for reasons of important public interest.

8.7You have the right to object to our processing of your personal data on grounds relating to your particular situation, but only to the extent that the legal basis for the processing is that the processing is necessary for: the performance of a task carried out in the public interest or in the exercise of any official authority vested in us; or the purposes of the legitimate interests pursued by us or by a third party. If you make such an objection, we will cease to process the personal information unless we can demonstrate compelling legitimate grounds for the processing which override your interests, rights and freedoms, or the processing is for the establishment, exercise or defence of legal claims.

8.8You have the right to object to our processing of your personal data for scientific or historical research purposes or statistical purposes on grounds relating to your particular situation, unless the processing is necessary for the performance of a task carried out for reasons of public interest.

8.9To the extent that the legal basis for our processing of your personal data is:

(a)consent; or

(b)that the processing is necessary for the performance of a contract to which you are party or in order to take steps at your request prior to entering into a contract,

and such processing is carried out by automated means, you have the right to receive your personal data from us in a structured, commonly used and machine-readable format. However, this right does not apply where it would adversely affect the rights and freedoms of others.

8.10To the extent that the legal basis for our processing of your personal information is consent, you have the right to withdraw that consent at any time. Withdrawal will not affect the lawfulness of processing before the withdrawal.

8.11You may exercise any of your rights in relation to your personal data by e-mail to admin@trialsconnect.org.

9.Third party websites

9.1Our website includes hyperlinks to, and details of, third party websites.

9.2We have no control over, and are not responsible for, the privacy policies and practices of third parties.

10.Personal data of children

10.1Our website and services are targeted at persons over the age of 16.

10.2If we have reason to believe that we hold personal data of a person under that age in our databases, we will delete that personal data.

11.Updating information

11.1Please let us know if the personal information that we hold about you needs to be corrected or updated.

12.About cookies

12.1A cookie is a file containing an identifier (a string of letters and numbers) that is sent by a web server to a web browser and is stored by the browser. The identifier is then sent back to the server each time the browser requests a page from the server.

12.2Cookies may be either "persistent" cookies or "session" cookies: a persistent cookie will be stored by a web browser and will remain valid until its set expiry date, unless deleted by the user before the expiry date; a session cookie, on the other hand, will expire at the end of the user session, when the web browser is closed.

12.3Cookies do not typically contain any information that personally identifies a user, but personal information that we store about you may be linked to the information stored in and obtained from cookies.

13.Cookies that we use

13.1We use cookies for the following purposes:

(a)authentication - we use cookies to identify you when you visit our website and as you navigate our website;

(b)analysis - we use cookies to help us to analyse the use and performance of our website and services; and

(c)cookie consent - we use cookies to store your preferences in relation to the use of cookies more generally.

14.Cookies used by our service providers

14.1Our service providers use cookies and those cookies may be stored on your computer when you visit our website.

14.2We use Google Analytics to analyse the use of our website. Google Analytics gathers information about website use by means of cookies. The information gathered relating to our website is used to create reports about the use of our website. Google's privacy policy is available at:https://www.google.com/policies/privacy/.

15.Managing cookies

15.1Most browsers allow you to refuse to accept cookies and to delete cookies. The methods for doing so vary from browser to browser, and from version to version. You can however obtain up-to-date information about blocking and deleting cookies via these links:

(a)https://support.google.com/chrome/answer/95647?hl=en(Chrome);

(b)https://support.mozilla.org/en-US/kb/enable-and-disable-cookies-website-preferences(Firefox);

(c)http://www.opera.com/help/tutorials/security/cookies/(Opera);

(d)https://support.microsoft.com/en-gb/help/17442/windows-internet-explorer-delete-manage-cookies(Internet Explorer);

(e)https://support.apple.com/kb/PH21411(Safari); and

(f)https://privacy.microsoft.com/en-us/windows-10-microsoft-edge-and-privacy(Edge).

15.2Blocking all cookies will have a negative impact upon the usability of many websites.

15.3If you block cookies, you will still be able to use all the features on our website.

16.Cookie preferences

16.1You can manage your preferences relating to the use of cookies on our website by visiting: www.trialsconnect.org/privacy-policy

17.Our details

17.1Our websites,

https://www.trialsconnect.org and https://trialsconnect.org.uk

are owned and operated by TrialsConnect, c/o William Harvey Clinical Research Centre, Charterhouse Square, London EC1M 6BQ.

17.2You can contact us:

(a)by post, to the postal address given above;

(b)using our website contact form;

(c)by email, using admin@trialsconnect.org.

18.Data protection registration

18.1We are registered as a data controller with the UK Information Commissioner's Office.

18.2Our data protection registration number is ICO:00010727031

Agreed  12 October 2018, Minor updates 7 April 2022