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Updated v1.0 | 10 June 2025

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Privacy Notice

 

realworld ms Ltd (“we”, “us”, “our” or “realworld”) is committed to protecting and respecting the personal data that we hold. Our website is realworld.ms. Our address is: realworld ms Ltd, Platform, New Station Street, Leeds, United Kingdom LS1 4JB.

 

realworld is a trading subsidiary of Shift.ms, which is registered as a charity in England and Wales. realworld has been established to undertake research for stakeholders involved in MS research and treatments, including pharmaceutical companies, healthcare providers and research bodies.

 

This Privacy Notice, together with any other documents referred to on it, sets out the basis on which any personal data we collect from you, or that you provide to us, will be processed by us. Please read the following carefully to understand our practices regarding your personal data and how we will treat it.

 

This Privacy Notice applies to personal data provided to us, both by individuals themselves or by others. We only use personal data in the way described in this Privacy Notice.The personal data that is provided to us is provided either directly from the individual concerned, from a third party acting on behalf of an individual, or from publicly available sources (such as internet searches, Companies House).

 

Where we receive personal data that relates to an individual from a third party, we request that this third party inform the individual of the necessary information regarding our use of their data, including the information in this Privacy Notice. Where necessary, reference may be made to this Privacy Notice and a copy may be provided.

 

We process personal data for numerous purposes, and the means of collection, lawful basis of processing, use, disclosure, and retention periods for each purpose are set out in the relevant sections below. This Privacy Notice also describes how we may use anonymised data which we receive from Shift.ms.

 

Personal data

The UK General Data Protection Regulation (“UK GDPR”) defines personal data as ”any information relating to an identified or identifiable natural person (“data subject”), by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person.”

 

The Controller

realworld is the controller as defined by the UK GDPR of the personal data it holds through its website and its research and survey activities. There may be instances where the same personal data is held by realworld and Shift.ms, including for research (including market research), stakeholder engagement, and supporting MS-related initiatives. Each of us is separately responsible for ensuring compliance with the UK GDPR for the processing of personal data with our operations and we are independent controllers. For any questions related to Shift.ms’ use of your personal data, you should contact Shift.ms at dataprotection@shift.ms. For questions relating to realworld’s use of your personal data, please use the contact details set out at the end of this Privacy Notice.

 

For your reference, Shift.ms may occasionally share with its members invitations to participate in research being carried out by realworld. realworld only receives anonymised or pseudonymised data from Shift.ms and personal data is not shared by Shift.ms with us unless you give Shift.ms permission to do so.

 

Lawful Processing

The lawful bases for processing personal data are set out in Article 6 of the UK GDPR. At least one of these must apply whenever personal data is to be processed. Additional requirements may apply in respect of special category personal data, such as health data, and realworld takes these requirements into account in respect of any health data you provide.

(a) Consent: you have given your free, informed and unambiguous consent for your personal data to be processed for a specific purpose.(b) Contract performance: the processing is necessary for the performance of a contract you have with realworld.

(c) Compliance with legal obligation: the processing is necessary for realworld to comply with its legal obligations (including, for example, for tax, social security, company administration and employment and personnel purposes), as well as to perform contracts, compliance purposes and related investigations.

(d) Protection of vital interests: the processing is vital to an individual's survival. This will rarely be the case.

(e) Legitimate interests: the processing is necessary for realworld’s legitimate interests, unless there is a good reason to protect the individual’s personal data that overrides those legitimate interests.

 

Data Rights

Your data subject rights are listed below:

  • the right of access;

  • the right to rectification;

  • the right to erasure or right to be forgotten;

  • the right to restriction of processing;

  • the right to be informed;

  • the right to data portability;

  • the right to object;

  • the right not to be subject to a decision based solely on automated processing.

 

[We do not engage in any decision-based processing affecting you based on automated processing.]

 

If you wish to exercise any of these rights please write to us at dataprotection@realworld.ms.

 

Data that we collect

We collect data from individuals who use realworld’s website, who engage with us in our research (including by commissioning our research), who provide services to us and who regulate our activities (such as tax and regulatory authorities).

 

Why do we process this data?

We use the personal data we hold for the following reasons:

  • Providing our services to you, to the wider MS community and to people who are affected by similar or related conditions;

  • Conducting and producing and publishing research for stakeholders, including eligibility verifications;

  • Improving our website and the services we provide;

  • Producing surveys and other research activities for MSers to participate in;

  • Administering payments for participation in research activities;

  • Sending follow-up information about research that has been conducted that individuals have been involved in;

  • Marketing realworld activities (e.g. via social media, email marketing campaigns), stakeholder engagement, or MS-related initiatives instigated by realworld, obtaining consent where we are required to do so.

  • Collecting user experience information to assess and improve the way in which we conduct research studies in the future

  • Collecting user experience information to assess and improve the way in which we conduct research studies in the future

 

What data is processed?

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Participants in research activities

The following data is processed with your consent:

  • Your username

  • Your email address

 

We may gather other information where it’s appropriate, relevant, and volunteered by you (that is, with your consent), for example:

  • Your age / date of birth

  • The country you live in

  • Year of diagnosis / time since diagnosis

  • Type of MS

  • Current and / or past treatments

  • Your gender

  • Ethnicity

  • Your lived experiences and viewpoints, which may be collected via polls, surveys, face to face interviews conducted online, online discussion boards, video and / or audio content that you record and provide to us as part of the research

 

We also may track your IP address in connection with personal data you provide to us. Please also see our separate cookies policy.

 

Our people

Staff

We collect personal data from our staff and contractors as part of the administration, management and promotion of our operations. Our staff handbook and our additional Staff and Contractor Privacy Notices explain further how personal data is held for our staff and contractors.

 

Applicants

Where an individual is applying to work for realworld, personal data is collected through the application process and is held for the following purposes:

  • Employment – we process an applicant’s personal data to assess their potential employment/engagement at realworld.

  • Administration and management – we may also use this personal data to make informed management decisions and for administration purposes.

 

Personal data collected for applicants is held for as long as necessary to fulfil the purpose for which it was collected. Generally, we hold this data for a maximum period of two years following the end of the application process unless the applicant becomes formally engaged by us.

 

Customers and suppliers

We may hold email addresses and contact details for our customers and suppliers.

 

People who use our website and social media platforms

When people visit our website, personal data is collected both through automated tracking and interacting with various forms on the website. Personal data may be collected when individuals fill in forms on our website or by corresponding with us by phone, email or otherwise. This includes information provided when an individual registers to use our website, subscribes to our service, makes an enquiry, comments on publications or social media posts, enters a competition, promotion or survey, applies to work for realworld and reports a problem with our websites.

 

Why do we process this data?

We process this data for the following reasons:

  • Functionality – to allow individuals to use some functionality of our website,certain personal data must be entered for features to work as intended.

  • Security – to keep our site safe and secure, we may sometimes collect personal data, for instance login information and other data that can be used to vouch for an individual’s identity.

 

Sharing Your Personal Data

We may disclose your personal data to third parties, including companies and other organisations, if we are under a duty to do so, including to comply with any legal obligation, or in order to enforce or apply any agreements, or to protect the rights, property, or safety of realword, Shift.ms and other individuals. This includes exchanging personal data for safeguarding purposes. We may disclose your personal data to our service providers and to our professional advisors. We may also disclose your personal data to organisations with whom you and we have reciprocal agreements for providing education, research and/or professional development services. These third parties may become the controller of your personal data and we or they will provide appropriate privacy notices to you so you are aware how your data is processed.

 

Third Party Websites

Our website may, from time to time, contain links to and from the websites and apps of our other networks, advertisers and affiliates. If you follow a link to any of these websites and apps, please note that these websites and apps have their own privacy policies and that we do not accept any responsibility or liability for these policies. Please check these policies before you submit any personal data to these websites and apps.

 

Protecting Your Personal Data

If we process any personal data outside of the UK / EEA, we will implement an adequate level of protection in accordance with applicable data privacy laws.

 

Security of Your Information

To help protect the privacy of your personal data, we maintain physical, technical and administrative safeguards. We update and test our security technology on an ongoing basis. We restrict access to your personal data to our staff members who need to know that information to provide benefits or services to you. In addition, we train our staff about the importance of confidentiality and maintaining the privacy and security of your information. We commit to taking appropriate disciplinary measures to enforce our employees' privacy responsibilities.

 

How Long We Store Your Personal Data For

We store your personal data in accordance with our data retention policy. This policy is reviewed and updated internally to ensure we do not store your data for longer than is necessary. We also review how and where we store any data to ensure that we meet our obligation to store data securely.

 

In addition, some of the data we hold may be subject to certain legal and regulatory obligations, which provide a minimum retention period for different types of data. The retention period varies depending on the data we hold.

 

Changes to This Privacy Notice

We may update and amend this Privacy Notice from time to time, and we will provide summary information on these updates and amendments. Updates and amendments become effective on posting on this website.

 

Enquiries and Complaints

All enquiries about our Privacy Policy should be sent to us at dataprotection@realworld.ms. We hope that you won’t ever need to, but if you do want to complain about our use of personal data, please send an email with the details of your complaint to dataprotection@realworld.ms.

 

For further information on your rights and how to complain to the ICO, please refer to the ICO website https://ico.org.uk/concerns

 

Contact details

Information Commissioner's Office

Wycliffe House

Water Lane

Wilmslow

Cheshire

SK9 5AF

Tel: 0303 123 1113 (local rate)

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