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Privacy Notice

We were started by a Multiple Sclerosis patient, so we understand how important your Personal Data is and that it’s our responsibility to protect it.

We conduct market research and research related activities, including recruiting participants on behalf of clients to take part in their projects (Our Activities) with Patients, Carers, Healthcare Professionals (HCPs) and Others across the world to allow them to get their opinions heard, earn money and raise money for charity. Patients, Carers, HCPs and Others can register with us, so we can notify you about Our Activities to see if you’d like to take part and to allow you to refer other users or support organisations. Charities and support organisations can also register with us to receive donations from our users and to refer other users to the community.

This Privacy Notice describes how Liberating Research Ltd (“company”, “us”, “we”) protects and makes use of the information you provide when you use liberatingresearch.com or liberatingsurveys.com or interact with us, how you can control the Personal Data we hold about you and information about third parties with whom your Personal Data may be shared.

If you have any questions about this policy, please get in touch, we’d be happy to answer any questions you may have.

You can also read more about what you agree to when using this Site within our Terms and Conditions.

This Notice may be updated from time to time. The latest version is published on this page and we recommend that you check back regularly to keep updated on any changes. If you are registered user of this site, you will receive notifications of updates to this Privacy Notice when you log into your account or via email.

This Privacy Notice was last updated on: 18th August 2021

What Data We Collect

From Registered Users

We gather information from you during registration and through changes you make in your online account, in order to contact you about Our Activities that may be relevant to you. You choose which Activities you want to take part in and when. You are under no obligation to take part in any studies we offer and can opt out or close your account at any time.

We collect the following information:

  • Contact information, such as name, email address, location and phone number
  • Demographic information, such as date of birth, preferences, race, gender, and interests
  • Information about your condition/s and related medication/s, or the condition/s you care for or treat/support
  • Payment information, such as bank details to send your payments or donations to, or the email address where we send your payment voucher
  • Organisational Information (for charities, support groups and other organisations)
  • Details about your specialty and the Practice or Hospital that you work in (for Doctors, Nurses and HCPs)
  • Other information relevant to client enquiries
  • Other information pertaining to special offers and Our Activities
  • Questions, answers, recommendations and suggestions relating to conditions, medications or other associated content
  • Technical information about where you are connecting from (such as your IP address, browser fingerprint and device/machine fingerprint). This information is not always collected but when it is, it is only collected and used for the purposes of fraud and duplicate account detection.

From All Site Users

We collect and store on an anonymous basis Site usage data in order to better understand how visitors use this Site and to present timely, relevant information to them. This includes the pages visited and for how long and other similar information. Please see the Cookies and How We Use Them section below for more information.

From Users Taking Part in Our Activities:

General Information

When we notify you about a relevant Activity, we will provide details of the Activity and what is involved, the amount you will be paid, the purpose of the Activity and, where possible, who it is being conducted by. You can then decide if you would like to participate if you are eligible to do so.

In many cases the research will be anonymous (such as most online surveys); however if additional Personal Data is being provided as part of the study (such as a telephone or face to face interview) and it is being shared with third parties not specified in this Privacy Notice then we will ask you to separately consent via a consent form or verbal consent agreement (“Consent Agreements”) to that specific use before taking part in the study. This ensures you are in control of your data at all times and you decide what information to share and what to retain. You are under no obligation to take part in any studies at any time.

Consent Agreements

The Consent Agreements you are presented with may be developed directly by us or independently by third parties involved in Our Activities. Any of our Consent Agreements you agree to may be shared with our Client or Clients who are conducting the research and may be stored by Liberating Research for up to 15 years for audit purposes.

Depending on the study, the research sponsor may or may not be identified before your participation in the interview. Where required, the Consent Agreements will explain why and if identification will be delayed until the end of the interview or withheld entirely.

If you ever have a question or concern about any Consent Agreements you are presented with by our team, please contact the Liberating Research team member who you are working with on the specific project for assistance. 

Sharing Your Data With Our Clients / Moderators / View Facilities / Other Interview Locations:

Depending on the type of Our Activities in which you agree to participate, we may be required to transfer some of your Personal Data, including your name, phone number(s), home address and email address (“Contact Details”), to our Clients and their representatives (e.g. moderators, videographers, photographers) and to our moderators (including freelancers, independent contractors, sole traders/proprietors and third party research organisations/consultancies who are conducting or assisting with Our Activities) for the purpose of contacting you for your interview or activity, attending a research project which will be held at your home or to provide you with access to a third party platform (e.g. bulletin boards, web conferencing, mobile app) that will be used during Our Activities.  

Depending on the type of Our Activities in which you agree to participate, we may be required to transfer your Contact Details, to the Viewing Facility/Interview Location where the activity is taking place for the purpose of tracking your attendance on the day of the research and validating your identity once you arrive at the Viewing Facility/Interview Location.

We may also share with our Clients and their representatives (e.g. moderators, study sponsors) and  our moderators (including freelancers, independent contractors, sole traders/proprietors and third party research organisations/consultancies who are conducting or assisting with Our Activities) the anonymised pre-interview (screening) responses you provide to us for a specific activity.  The purpose of this sharing is to allow our Clients and their representatives to review your eligibility to participate in the associated activity. 

Your Contact Details will be kept secure at all times and our Clients and their representatives, our moderators and the Viewing Facilities / Interview Locations will be obliged to apply the same levels of protection as we apply to the Contact Details you provide to us.  

Please note that some of our Clients and their representatives and our moderators may be based or have offices located outside of the UK and the EEA. Although our Clients and their representatives and our moderators have put measures in place to protect the information shared with them, there are possible risks related to the transfer of data outside of the UK and the EEA in the absence of an adequacy decision by the Information Commissioners Office and/or the European Commission. If you would like more information about where the client and their representatives or our moderators are based for any of Our Activities that you are participating in, please contact the Liberating Research team member who you are working with on the specific project for assistance.

Our Clients and their representatives, our moderators and the Viewing Facilities / Interview Locations are instructed to delete the Contact Details shared with them immediately following completion of the project or as specified in the Consent Agreements for the related project.

If it is necessary, and permittable per the applicable industry guidelines and Codes of Conduct,  for the research sponsor, who may or may not be based in the United Kingdom or EEA, to have access to any of your Contact Details, it will be for the same purposes as noted above which apply to our Clients. The research sponsor will be required to adhere to the same guidelines regarding the security, processing, and retention of your data as our Clients.

By agreeing to participate in Our Activities, you are consenting to the sharing of your Contact Details with our Clients, our Clients’ representatives, our moderators, Viewing Facilities/Interview Locations and the research sponsor for the purposes as outlined in this Privacy Notice. If you do not wish for your Contact Details to be shared for these purposes or have any questions regarding this use of your Contact Details, please contact our Privacy Team at privacy@liberatingresearch.com for further assistance.

Standard Procedures

When you participate in one of Our Activities, we recommend that you do not mention any identifiable information (such as your full name or contact details) during Our Activities or in any documents associated with Our Activities (e.g. online diaries, pre-interview homework, video/audio recordings, etc.) to ensure your anonymity.

If you are required to share photos, audio recordings or videos as part of the Our Activities, we recommend that you do not upload any identifiable images, audio or videos of other people when submitting these files. If you do include images or voices of other people in your submissions, we assume that you have collected the proper permissions from these individuals to share this Personal Data with us, our Clients and their representatives for the purposes as outlined in the Consent Agreements for the specific project.

If you are taking part in a phone, video or online interview/session/group or a similar Activity, you may be asked to connect to an online platform (including but not limited to Civicom, FocusVision, Adobe Connect, WebEx, Mikogo, Microsoft Teams, join.me, GoToMeeting, Zoom) in order to view some project materials during the interview, to perform the required Activities and/or to connect to the audio or video where applicable. We recommend that you only enter your first name and that you only enter the minimum amount of personal information and/or Contact Details that are required in order to access the platform; however, these platforms will ensure that any information you provide to them will be held securely. For more information about how they protect your rights please refer to the Privacy Notice for the relevant platform (this can usually be found at the bottom of the home page on their website, if you would like us to send you a link to it at any point or have any questions then please let your project manager know).

How We Use This Data

Collecting this data allows us to offer you Our Activities that are relevant to you and to pay you for taking part or, in the case of charities and support organisations, to allow our users to select you for their donation and to send the associated donations to your organisation.

Specifically, we may use this data:

  • To contact you about Our Activities that may be suited to you (or other users you could refer), based on the data you have entered
  • To telephone you in order to conduct a phone-based eligibility assessment with one of our trained moderators
  • To contact you in response to a specific enquiry or about a specific study that you are involved in
  • To customise the Site for you (including development updates managed by third party consultants who may be located outside of the EEA. Your Personal Data will be kept secure at all times and our consultants will be held to the same levels of protection as we apply to the Personal Data you provide to us).
  • To send you payments or donations following the successful completion of a study and to notify you about these payments or donations
  • To improve the products and services we provide
  • To send you newsletters or other emails about products, services, offers and other things we think might be relevant to you, if you have opted-in to this type of communication
  • In the case of Health Care Professionals; to contact you at the practice or hospital you have specified in order to verify your status
  • In the case of Activities that you have agreed to participate in that involve our clients or moderators contacting you directly (such as telephone or face to face interviews), to provide our client or moderator with your contact details, exclusively for the purposes of contacting you for the related study.
  • We may share with clients, vendors, suppliers, charities or other business contacts, in anonymised and aggregated form, information supplied by members of the Liberating Research community.

We shall not process your Personal Data in a way that is incompatible with the purposes for which it has been collected or subsequently authorised by you.

Our lawful bases for the processing of your Personal Data are:  1) your consent and/or 2) any other applicable legal bases, such as our legitimate interest in offering Our Activities and referral capabilities to Patients, Carers and others.

Your Notification Preferences

By registering for an account with the Liberating Research community, you agree to be notified by email, phone or SMS about Our Activities that may be relevant to you or the users you know, support or treat, based on the information you have provided.

You can change your notification preferences at any time on your Notifications page. You can access your Notifications page by logging into your online account or you can delete your account at any time using the ‘Delete Your Account’ option within your account.

Your Payment Information

By completing Our Activities (or by registering as a charity or support organisation), you will earn incentives or donations as noted in the ‘Payments and Donations’ section of our Terms and Conditions.

You can choose to be paid via Amazon voucher, bank transfer or to donate your entire incentive to one of our registered charities (the available payment options may vary depending on your location or if dictated by our client for a specific project).  In the case of charities and support organisations you will be paid by bank transfer (or in occasional circumstances via direct card payment on your website).

Depending on the payment method/reward chosen by you, your contact and, if relevant, bank details or other payment information may be transferred to one or more of the following reward fulfilment partners (or their subsidiaries) to enable them to perform the payment on behalf of Liberating Research. Your data is protected by these companies in line with their Privacy Notices (which are linked to below). Please note these third parties may be based outside of your home country.

Reward Fulfilment Companies
Amazon Inc (www.amazon.com/privacy)
PayPal (Europe) S.à r.l. et Cie, S.C.A.(www.paypal.com/uk/webapps/mpp/ua/privacy-full)
Metro Bank PLC (www.metrobankonline.co.uk/privacy)
TransferWise Ltd (www.transferwise.com/privacy-policy)
Carrefour France (www.carrefour.fr/articles/politique-generale-protection-donnees-personnelles)
Carrefour Spain (www.carrefour.es/politica-de-privacidad/mas-info/)
Carrefour Italy (www.carrefour.it/privacy.html)
Rewe (www.rewe.de/service/datenschutz/)

We may update this list in the future in order to offer alternative or additional payment methods or to replace existing providers with more effective ones. If this occurs, it will be updated in this Privacy Notice and you will be notified within your account the next time you login. Occasionally other reward fulfilment partners that are not listed in this privacy notice may be used for specific projects where required for a specific project (in which case this will be confirmed to you in advance of your participation).

Other Uses of your Data

We may disclose your Personal Data for other purposes or to other third parties when you have consented to or requested such disclosure or under the following circumstances:

  • We respond to witness summons, court orders, or legal process, or to establish or exercise our legal rights or defend against legal claims;
  • We believe it is necessary to share information in order to investigate or prevent fraud, or to take action regarding illegal activities, situations involving potential threats to the physical safety of any person, or as otherwise required by law.
  • We transfer information about you if Liberating Research Ltd is acquired by or merged with another company. In this event, we will notify you before information about you is transferred and becomes subject to a different privacy notice.
  • Where we are required to do so in relation to the Healthcare Payment Disclosure requirements (please see this section in our Terms and Conditions for more information)

Where We Store Your Data

Your data may be stored / processed on servers in the EU, UK, and occasionally in the United States or other countries, that are operated or managed by third party companies in the course of doing business. At all times, the data will be encrypted or otherwise suitably protected whether in transit or at rest.

These companies / servers are exclusively used by us for data storage / email hosting / accountancy and other internal business processes and your Personal Data is never shared with these companies for the purposes of promotion or advertising. For example, we use Microsoft Corporation to host and run our Email system (using European servers) and we use Egnyte Inc’s servers in Europe to host most of our files. Your data is protected by these companies in line with their Privacy Notices. Please note these third parties may be based outside of your home country.

Where your data is stored outside the United Kingdom or the EEA we only transfer it to countries that have been identified as providing adequate protection for UK or EEA data or to third parties who have approved transfer mechanisms in place to protect your personal data (e.g. by entering into Standard Contractual Clauses) in order to ensure they comply with the UK GDPR/2018 Data Protection Act, the EU GDPR and other relevant data protection regulations.

How Long We Store Your Data

We retain the Personal Data of registered users within our system for as long as you are registered with us. To see the data retention policies for any Personal Data you have submitted as part of one of Our Activities please check the consent form you agreed to for the specific study or get in touch with us for more information.

Your Rights

You are entitled to view, amend, or delete the Personal Data that we hold. If you are a registered member then you can login to your online account at any time and access or update your information, remove your account, or change your notification preferences. If you have taken part in any of Our Activities, then any Personal Data you submitted as part of those activities will be retained in accordance with the associated Consent Agreement to which you agreed.

You can opt-out of Liberating Research non-essential notifications at any time or close your account from within the Members’ area. If you choose to close your account then all of your Personal Data will be permanently deleted from our system except where we have a legal obligation to retain it or if it has been submitted under a separate consent agreement for a particular study. If there are any outstanding payments associated with the account then your banking or other relevant payment details will be retained until the outstanding payments have been made. Please note that you may continue to receive some previously prepared survey invitations/notifications for a few days following the termination of your account.

If you close your account, the answers to any of Our Activities, Condition Q&A questions/answers or any other information you have submitted to Liberating Research Ltd in any form may be retained in anonymous form with no associated Personal Data attached to these records or for the timeframes defined by the Consent Agreements for that study. If you would like to withdraw consent, restrict processing, or request deletion of this information as part of the closure of your account, please alert us to this fact when submit your request to close your account. Please note that if you delete your account then we will no longer be able to identify all of the Activities that you have taken part in centrally, as you will no longer have an account associated with all of your Activities. In the event you wish to withdraw your consent or enact any of your rights with regard to specific Activities you have participated in, after you delete your account, you will need to use the contact details listed in the related consent agreement to enact any associated rights (or else please contact our Privacy Team with details of the specific Consent Agreement/s and the rights you would like to enact).

Any Personal Data that you have provided as part of Our Activities will be protected and stored under the terms of the Consent Agreements for that activity. Please refer to the related Consent Agreements or get in touch if you would like further information about Personal Data you have submitted as part of any specific activity or would like to withdraw your consent for the processing of your Personal Data for a specific activity.

If we have sent payments to you for taking part Our Activities, or for any other reason, then your name, address and payment details will be retained for 7 years for tax and legal purposes, following the deletion of your data.

You can email any related requests to our Privacy Team at privacy@liberatingresearch.com and we will get back to you upon receipt of your outreach.

Access, Rectification and Erasure.

You have the right to obtain confirmation about whether and what Personal Data is included about you in our databases. Upon request, we will provide you with access to all your Personal Data held by us within the time frame dictated by the applicable data protection regulations.

We will permit you to know what Personal Data about you is included in our databases and to ensure that such Personal Data is accurate and relevant for the purposes for which we collected the Personal Data.

You may review your Personal Data stored in our databases and correct, update, modify, or delete any data that is incorrect or incomplete.

Your right to access your Personal Data may be restricted in exceptional circumstances, including, but not limited to, when the burden or expense of providing this access would be disproportionate to the risks to your privacy in the case in question, or where the rights of persons other than you would be violated by the provision of such access. If we determine that your access should be restricted in a particular instance, we will provide you with an explanation of our determination and respond to any enquiries you may have.

You may access your Personal Data by contacting us by phone, post or email at the contact information below. In making modifications to your Personal Data, you must provide only truthful, complete, and accurate information. 

Liberating Research Privacy Team
Unit 7/8 (1st Floor) Warwick Works
Downs Road
London E5 8QJ UK
privacy@liberatingresearch.com
+44 (0) 207 249 4461

Restriction of Processing

You may restrict processing of your Personal Data for certain reasons or object to it being used for a specific purpose, such as, for example if you consider your Personal Data collected by us to be inaccurate or you have objected to the processing and the existence of legitimate grounds for processing is still under consideration.

Data Portability

You may request the Personal Data you provided to us in a commonly used and machine-readable form.

Right to Withdraw Consent

Subject to the provisions of this privacy notice you have the right to withdraw your consent at any time, without affecting the lawfulness of our processing based on such consent before it was withdrawn, including processing related to existing contracts for our Services.

Requests for Personal Data

We will track each of the following and will provide notice to the appropriate parties under law and contract when either of the following circumstances arise: (a) legally binding request for disclosure of the Personal Data by a law enforcement authority unless prohibited by law or regulation; or (b) requests received from the Data Subject.

Cookies and How We Use Them

What is a cookie?

A cookie is a small file placed on your computer's hard drive. It enables our website to identify your computer as you view different pages on our website.

Cookies allow websites and applications to store your preferences in order to present content, options or functions that are specific to you. They also enable us to see information like how many people use the website and what pages they tend to visit.

How we use cookies

We may use cookies to:

  • Analyse our web traffic anonymously using Google Analytics. Anonymised usage data helps us improve the website structure, design, content and functions.
  • Identify whether you are signed in to our website. A cookie allows us to check whether you are signed into the site.
  • Test content on our website. For example, 50% of our users might see one piece of content, the other 50% a different piece of content.
  • To recognise when you register, apply for a study or perform another action on our website as a result of an advert on Facebook, Google, Twitter or another advertising platform We may use Facebook, Google, Twitter or another advertising partner’s tracking cookies on our survey information pages. We do not supply any Personal Data to these companies about you and this is only for the purposes of tracking the conversions.

Cookies do not provide us with access to your computer or any information about you, other than that which you choose to share with us.

Controlling cookies

You can use your web browser’s cookie settings to determine how our website uses cookies. If you do not want our website to store cookies on your computer or device, you should set your web browser to refuse cookies.

However, please note that doing this may affect how our website functions. Some pages and services may become unavailable to you.

Unless you have changed your browser to refuse cookies, our website will issue cookies when you visit it.

To learn more about cookies and how they are used, visit All About Cookies.

Security

We have implemented physical and technical safeguards to protect your Personal Data from loss, misuse, and unauthorised access, disclosure, alternation, or destruction. For example, electronically stored Personal Data is stored on a secure network with firewall protection, and access to our electronic information systems requires user authentication via password or similar means.

We also employ access restrictions, limiting the scope of employees who have access to Personal Data.  Our personnel may access and use Personal Data only if they are authorised to do so and only for the purpose for which they are authorised.

Further, we use secure encryption technology to protect certain categories of Personal Data.

Despite these precautions, no data security safeguards guarantee 100% security all of the time.

Questions or Complaints?

You may contact us with questions, concerns, or complaints concerning our privacy practices or this Privacy Notice at the following contact points:

Liberating Research Privacy Team
Unit 7/8 (1st Floor) Warwick Works
Downs Road
London E5 8QJ UK
privacy@liberatingresearch.com
+44 (0) 207 249 4461

General Data Protection Regulation (GDPR) - European Representative
Pursuant to Article 27 of the General Data Protection Regulation (GDPR), Liberating Research Ltd. has appointed European Data Protection Office (EDPO) as its GDPR representative in the EU. You can contact EDPO regarding matters pertaining to the GDPR:

Company Information

This website is owned and operated by Liberating Research Ltd (“company”, “us”, “we”) which is the Data Controller in relation to information supplied via the website; a company registered in England and Wales with company number 09761045. The registered offices are located at 20-22 Wenlock Rd, London, N1 7GU, United Kingdom. Liberating Research Ltd is registered with the Information Commissioners Office (ICO) with registration number ZA142323 and are members of The British Healthcare Business Intelligence Association. Please note this website contains public sector information licensed under the Open Government Licence v2.0 (including data from the Organisation Data Service, Health and Social Care Information Centre, licenced under the Open Government Licence v2.0).

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Liberating Research
Unit 7/8 (1st Floor)
Warwick Works
Downs Road
London E5 8QJ UK