Privacy and data protection policy

The purpose of this policy is to inform you, as a user of the Participate website, about the information we collect when you use the Participate website, how that information is protected and how we use the information you provide. We are committed to protecting your privacy and security and want you to feel secure at all times when using the Participate website.

This policy covers:

1. Who we are
2. About the Participate website
3. What information we collect
4. How and why we use your personal data
5. How and why your personal data is shared with other parties
6. How we protect your personal data
7. Your rights and preferences
8. Changes to the Participate privacy policy

1. Who we are

MQ: Transforming Mental Health is a registered charity in England and Wales (1139916) & Scotland (SC046075) and a registered company in England and Wales (7406055).

MQ is registered as a data controller with the UK Information Commissioner’s Office. As such, we are responsible for ensuring compliance with EU and UK data protection law when we process your personal data. Our practices are aligned with the Data Protection Act 2018 (DPA), the General Data Protection Regulation (GDPR) and the Privacy and Electronic Communications Regulation (PECR).

2. About the Participate website

The Participate website is a service run by MQ to help improve public involvement in mental health research. The service enables mental health researchers to publish their studies to members of the public who are interested in taking part. We hope this will improve research participation and in turn improve the quality of research being conducted.

Prospective participants are able to register their interest in a research study published on the Participate website by providing information about themselves (including their name, email, gender and ethnicity) which is then securely shared with the researcher conducting the study, who will use this information to invite candidates to participate in their research.

All researchers using the Participate website are required to create a secure account to access this information.

Before a study is published on the Participate website, researchers are required to:

• create an account; and
• submit their study for approval by MQ.

Studies will only be approved by MQ if they meet our selection criteria including:

• being aligned with MQ’s vision and values;
• being related to mental health; and by

providing evidence of the necessary ethics approval, as set out in guidance issued by the Health Research Authority.

MQ will not permit a study to be published on the Participate website unless the study has been approved by MQ.

3. What information do we collect?

As a result of you visiting the Participate website, MQ will collect or otherwise process your personal data in the following ways:

• When you provide your personal data to sign up to email alerts.This will include your email address. You may also choose to share details of mental health conditions you are interested in hearing about with regard to research.
• When you provide your personal data to apply for a research study. This will include your name, email address, gender and ethnicity. If you consent to follow up contact from MQ, this consent will also be stored in MQ’s email software application.
• When you contact MQ by other means, such as email or telephone. This may include your name, address, contact details and other personal data applicable to your enquiry (such as gender and ethnicity).
• In the form of information provided by your web browser, through the use of cookies or similar software. For details about our use of such software, please see our Cookie policy.
• If you are a researcher, then we will gather information about you relevant to your mental health research study- including your study name, eligibility criteria, location, recruitment deadline and study aims; and some information about you, such as your title, biographical details and photo.

We only gather special category personal data, for example relating to your ethnicity, when there is reason to do so and with your consent. We will only store your personal data for as long as reasonably necessary.

MQ is committed to improving diversity of research participation. Gathering information about gender and ethnicity allows us to monitor how different groups are engaging with the Participate website and take appropriate action to address any imbalances.

Knowing the gender and ethnicity of prospective participants is important for researchers to ensure their studies are representative of the affected population they are considering in their research.

We also collect, use and share aggregated data such as statistical or demographic data. Aggregated data could be derived from your personal data but is not considered personal data in law as this data will not directly or indirectly reveal your identity. For example, we may aggregate usage data to calculate the percentage of users accessing a specific website feature. However, if we combine or connect aggregated data with your personal data so that it can directly or indirectly identify you, we treat the combined data as personal data which will be used in accordance with this privacy policy.

4. How and why we use your personal data

We will only use your personal data when the law allows us to. Most commonly, we will use your personal data in the following circumstances:

• Where we need to perform the contract we are about to enter into or have entered into with you.
• Where it is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests.
• Where we need to comply with a legal obligation.
• In relation to special category personal data, where you have provided consent for us to do so.

Further information regarding the lawful basis for processing described above can be obtained from the Information Commissioner's Office website www.ico.org.uk.

MQ will only use your personal data for the purposes for which we collect it, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose. If you wish to obtain an explanation as to how the processing for the new purpose is compatible with the original purpose, please contact us.

If we need to use your personal data for an unrelated purpose, we will notify you and we will explain the legal basis which allows us to do so.

Please note that we may process your personal data without your knowledge or consent, in compliance with the above rules, where this is required or permitted by law.

Below we have set out specific examples of how MQ will use personal data we collect through your use of the Participate website:

If you apply to take part in a research study

If you apply to take part in a study, the information you provide will be temporarily stored in our website database. This is so that researchers can access your information and contact you about taking part in their study. Storing your personal data is always temporary and is automatically deleted three months after the study recruitment end date. This timeframe allows researchers sufficient time to process your application.

Three months after the study recruitment end date, application data relating to gender, ethnicity and age are anonymised so that we can evaluate the effectiveness of the platform in recruiting a diverse range of applicants. At this point your personal data such as name, email and date of birth will no longer be associated with the application and will be permanently deleted from our records. 

Gathering specific information is vital to allow researchers to be able to follow up with participants who are interested in taking part in their studies.

If you are invited to participate, and consent to participate in a particular research study, the researcher’s policies and terms and conditions surrounding the use of your personal data relevant to that study will then apply.

If you are a researcher publishing on the Participate website

If you are a researcher publishing your study on the Participate website we will gather information relating to your study which will be visible to prospective participants. We will store this data in our website and it will be shown to the public whilst your study is recruiting on the Participate website.

If you sign up to email alerts

Your information enables MQ to understand you better and allows us to tailor our communications to you.Collecting your data allows us to make sure we are only contacting you about relevant opportunities to take part in mental health research studies.

When you contact us directly by email or other means

If you contact us by email, phone or other means, we may store some of the data you provide - for example, if it relates to your communication preferences, or you have requested specific information.

Information gathered through your web browser

Information gathered through your web browser, for example through the use of cookies, teaches us about the use of the website. You can also read MQ’s cookie policy if you’d like more information about this.

We will also store your data in our Customer Relationship Management database, Raiser’s Edge. This will help us to understand more about your use of the Participate website and allow us to contact you about other relevant opportunities to support your work in mental health research.

5. How and why your personal data is shared with other parties

Sharing participant data with researchers

To enable you to participate in mental health research studies, we will share your data with the researcher recruiting to a study where you have given your consent for us to do so.

Researchers are obliged to agree to our Terms and Conditions, including providing adequate protection of your data once it is in their control. Read more about our agreement with researchers in the researcher Terms and Conditions.

Third-party links

The Participate website may include links to third-party websites, plug-ins and applications, such as a researcher’s study website. Clicking on those links or enabling those connections may allow third parties to collect or share personal data about you. We do not control these third-party websites and are not responsible for their privacy statements. When you leave our website, we encourage you to read the privacy policy of every website you visit.

Third Parties within the UK and EU

For operational reasons, or in order to meet specific requests, data may also be processed on MQ’s behalf by external organisations based within the UK and the EU. In these instances, these organisations are subject to the same, or equivalent laws and regulation in respect of privacy and data protection as MQ and your personal data will be handled in accordance with these.

Third parties will only handle MQ’s data once we have screened their best practice policies and reviewed their:

• Methodology for being compliant with Data Protection Laws
• Processes for monitoring quality control
• Methodology of conducting due diligence

We will never sell your details to any third parties.

Third Parties in the USA and the rest of the world

When we work with third parties based outside of the EU/ EEA we conduct due diligence in relation to that organisation to ensure that they are capable of providing adequate levels of protection that are complaint with the GDPR and DPA. Whenever we transfer your personal data to organisations outside the EEA, we ensure a similar degree of protection is afforded to it which is compliant with data protection legislation.

6. How do we protect your data?

Personal data submitted to, or collected by, MQ will be kept confidential and secure. We will take all reasonable measures to ensure we keep your information secure, accurate and up to date, and store it only for as long as is reasonable and necessary.

Information will be processed only by MQ as a data controller, or on our behalf under strictly regulated conditions and in line with the provisions of data protection laws. This will be carried out by employees of MQ who have access to our databases or data storage systems and have received data protection training.

MQ has in place appropriate security measures to ensure any platforms related to MQ have gone through a quality control process to ensure security of processing. However, given the nature of the internet we cannot guarantee complete security.

7. Your rights and preferences

If you want to make any changes to your preferences, you can do so by contacting Supporter Care using the details provided below.

As a data subject, you have the following rights under the Data Protection Laws:

• the right to request accessto personal data relating to you
• the right to request correction of personal data relating to you
• the right to request erasure of personal data relating to you
• the right to request restriction of processingof personal data relating to you
• the right to request the transferof personal data relating to you
• the right to withdraw consent

These individual rights are explained on the Information Commissioner's Office website.

If you wish to exercise any of your data subject rights, please contact MQ - either:

• Write to Supporter Care, MQ: Transforming Mental Health, Unit B 6 Honduras Street, EC1Y 0TH
• or Email: [email protected]

We will respond in a timely manner to any rights that you wish to exercise, and for Subject Access Requests (SARs) this has to be within a month of receiving your request unless the request is particularly complex.

We will not require you to pay a fee in the course of you exercising any of your rights. However, we may charge a reasonable fee, or refuse to comply with your request, if your request is clearly unfounded, repetitive or excessive.

8. Changes to MQ’s Participate privacy and data protection policy

We keep this policy under regular review and it may change from time to time. For example, we will be updating it to reflect any new legal requirements set out in the ePrivacy regulation, the Privacy and Electronic Communications Regulations, which is expected to be updated by 2019.

Please visit this webpage to keep up to date with any changes to our privacy policy. This policy was last updated in October 2019.