The Cochrane Collaboration (company number 03044323 and charity number 1045921) ("Cochrane", "we", "us") is committed to protecting the privacy and security of those whose personal data we process. We acknowledge the need to protect personal data that is collected by or disclosed to us and to manage it in accordance with the Data Protection Act 2018 and UK GDPR (“Data Protection Laws").

Please read this policy carefully to understand how we collect and use (process) your personal data in connection with your role in a Cochrane Group.

We will review this Privacy Statement regularly to comply with our legal obligations. We will notify you of any important changes.

As a data controller we have legal obligations to ensure that we only use your data in a fair, transparent and secure manner. If you have any questions regarding this Privacy Policy or our use of your data, or you wish to exercise any of your legal rights under Data Protection Laws, please contact dataprotection@cochrane.org.

When do we collect your personal data?

We collect personal data about you when you take on a role with a Cochrane Group.

What data do we collect?

We collect the minimum personal data required to manage your role in a Cochrane Group within our systems. When you take on a role within a Cochrane Group, we will collect:

• Group role data: For the purposes of keeping a record of your role within a Cochrane group, and ensuring you have access to the appropriate systems and tools, we will collect your name, email address, and details of your role.
• Declaration of Interests data: If you accept a role within a Cochrane Group, you will be required to submit a declaration of interest form, and then re-submit this annually. On this form, we will collect your name, your Cochrane Group role, and details of any financial or non-financial interests relevant to your role in a Cochrane Group.
• Cochrane account data: You will require a Cochrane account if you hold a role within a Cochrane Group, in order to access Cochrane systems and tools which will support you in carrying out your role. We collect basic personal data when you sign up for a Cochrane account. This includes your name, email address and country of residence. You may choose to provide further information, such as the languages you speak and your healthcare interests. You can login to your Cochrane account at any time to update the personal details in your profile. If you are unsure how to update your personal information, please get in touch with us at support@cochrane.org.

The accuracy of your information is very important to us, so please keep us informed if your personal data changes during your relationship with us. In particular, please inform us if you leave your role within a Cochrane Group by contacting support@cochrane.org.

Special category data

Data Protection Laws recognise that certain ‘special categories’ of data are more sensitive. These include information relating to health, race, ethnic origin and political or religious beliefs. We only ask for special category personal data if there is a specific need for this. We will use it only for the purpose for which it was provided, and only ever with your explicit consent.

How do we use your personal data?

We use your personal data in connection with your role in a Cochrane Group. We will only use your personal data when the law allows us to. This is likely to be limited to the following examples:

• To provide you with access to the appropriate Cochrane systems/tools.
• For our own internal record keeping purposes, where there is either a legal requirement for us to do so or where it is in our legitimate interests.
• To send you communications related to your role in a Cochrane Group.

Disclosure: Do we share your personal data?

Unless we have a lawful basis for doing so, Cochrane will not share your personal data with or sell your personal data to any third party for marketing purposes, and you will not receive offers from other companies or organisations as a result of giving your details to us.

Your declaration of interests will be publicly available on Cochrane’s website and/or the website of your Cochrane Group.

We may share your personal data with the parties set out below for the purposes set out in the section “How do we use your personal data?”:

• Sugar CRM Inc – provider of our CRM system.
• CRM Solution Ltd (redk) – provider of CRM consultancy services.
• Aries Systems Corporation – provider of our Editorial Manager platform.
• Learning Pool Ltd – provider of our LXP learning platform.
• Metaxis Limited – the host of Cochrane Crowd and CRS.
• Data Language (UK) Ltd – provider of PICO annotation tools.
• Professional advisers acting as processors or joint controllers including lawyers, bankers, auditors and insurers based in the UK.
• Regulators and other authorities acting as processors or joint controllers based in the UK who require reporting of processing activities in certain circumstances.
• Third parties to whom we may choose to sell, transfer or merge parts of our business or our assets. Alternatively, we may seek to acquire other businesses or merge with them. If a change happens to our business, then the new owners may use your personal data in the same way as set out in this privacy policy.

We require all third parties to respect the security of your personal data and to treat it in accordance with the law. We do not allow our third-party processors to use your personal data for their own purposes and only permit them to process your personal data for specified purposes and in accordance with our instructions.

How do we protect your personal data?

We take appropriate physical, electronic and managerial measures to ensure that we keep your data secure. Those of our employees and contractors who have access to personal data are required to undertake data protection training.

We have put in place procedures to deal with any suspected personal data breach and will notify you and the ICO of a breach where we are legally required to do so.

Transfers of data outside of the UK

We may transfer your personal information to third party data processors who are based outside the UK. We only transfer your information (i) if there is an adequacy decision in place which covers the transfer, or (ii) pursuant to specific contracts approved for use with such transfers.

How long do we keep your personal data?

We will retain your personal data as long as we believe that you have a role within a Cochrane Group, or where we have another legitimate and lawful reason to do so. If you cease your role in a Cochrane Group, but retain your Cochrane account, we will continue to process your personal data to the extent necessary to provide you with access to your Cochrane account. Unless you contact us and ask us not to do so, once your role within a Cochrane Group ends, we will retain some details about your previous role – usually the role type, name of group, and start and end dates. This is to enable us to provide evidence of your contributions to Cochrane and to keep a record of people who may be eligible to be nominated for Cochrane awards.

We may need to retain some information to comply with our legal obligations, but we will only retain this for as long as is necessary.

What are your rights in relation to your personal data?

You can:

• Ask us to correct your personal data if information is inaccurate, out of date or incomplete.
• Ask us to provide a copy of the data we hold about you.
• Withdraw your consent at any time, if we have asked for your consent to process certain data. This will not affect the lawfulness of any processing carried out before you withdraw your consent. If you withdraw your consent, we may not be able to provide you with access to Cochrane systems/tools. We will advise you if this is the case at the time you withdraw your consent.
• Ask us to delete the data we hold about you. If we need to continue holding this information (for example, if you are a published author) we will explain our reasons for this and how the data will be stored.
• Object to processing of your personal data where we are relying on a legitimate interest (or those of a third party) and there is something about your particular situation which makes you want to object to processing on this ground as you feel it impacts on your fundamental rights and freedoms. You also have the right to object where we are processing your personal data for direct marketing purposes. In some cases, we may demonstrate that we have compelling legitimate grounds to process your information which override your rights and freedoms.
• Request restriction of processing of your personal data. This enables you to ask us to suspend the processing of your personal data in the following scenarios:
  • If you want us to establish the data's accuracy.
  • Where our use of the data is unlawful but you do not want us to erase it.
  • Where you need us to hold the data even if we no longer require it as you need it to establish, exercise or defend legal claims.
  • You have objected to our use of your data but we need to verify whether we have overriding legitimate grounds to use it.
• Request the transfer of your personal data to you or to a third party. We will provide to you, or a third party you have chosen, your personal data in a structured, commonly used, machine-readable format. Note that this right only applies to automated information which you initially provided consent for us to use or where we used the information to perform a contract with you.

We try to respond to all legitimate requests within one month. Occasionally it could take us longer than a month if your request is particularly complex or you have made a number of requests. In this case, we will notify you and keep you updated.

To exercise any of these rights or if you have any questions about this Privacy Policy please contact dataprotection@cochrane.org.

You can also address queries to:

Data Protection Lead
Cochrane
11-13 Cavendish Square
London
W1G 0AN

Telephone: +44 207 183 7503

While we hope to be able to resolve any concerns you have about the way that we are processing your personal data, you have the right to lodge a complaint with the Information Commissioner’s Office (ICO) if you believe your data has been processed in a way that does not comply with Data Protection Laws, or have any wider concerns about our compliance with Data Protection Laws. You can do so by calling the ICO helpline on +44 303 123 1113 or via their website. We would, however, appreciate the chance to deal with your concerns before you approach the ICO so please contact us in the first instance.

Changes to this Privacy Policy

We keep our privacy notices under regular review. This notice was last updated in July 2024.