MSKHUB GDPR Privacy Notice

Introduction

Here at the MSKHUB, we work hard to ensure that you get the very best experience, whether you are a visitor, or a registered user, without having to worry if your information is safe. Outlined below is how and why we collect, use, and share your personal information, and your rights in relation to that data.

We know that there’s lots of information here, but we want you to be fully informed – we hope the following sections will answer any questions you have but if not, please do get in touch with us. We may update this privacy notice from time to time. You will be notified of any changes to this policy by email, and required to agree to the new version if you are happy to continue to be registered on the MSKHUB site.

About us

The MSKHUB is funded and sponsored by the University of Salford. The University of Salford is the ‘Data Controller’ of your personal data and is subject to the data protection legislation and to the UK General Data Protection Regulation 2018 (GDPR). We are registered with the Information Commissioner’s Office (ICO) registration number Z469563X and our Data Protection Officer is Melanie Earp.

Why do we collect your information?

Under the GDPR we must have justification (“legal basis”) for obtaining your information, we believe that this is:

Public Task

To ensure that we can carry out our role as an educational and research establishment, meeting legal, moral and contractual obligations, as laid out in the University’s Charter.

Informed Consent

We seek to obtain informed consent from users for processing their personal data. By providing clear and transparent information about the types of data collected, the purposes of processing, and the rights of the users, individuals can make an informed decision to grant or withdraw consent. This ensures that the processing is based on the explicit agreement of the individuals involved.

Legitimate Interest

We have a legitimate Interest for processing your personal data to ensure that we can carry out research to tailor resources and services offered on the platform effectively. This interest is balanced with the privacy rights of individuals, and measures are in place to ensure that data processing is fair, transparent, and respectful of user rights.

What sort of data do we collect?

Under the GDPR we are only permitted to collect the minimum amount of information needed to carry out a specific purpose. The purpose of the MSKHUB platform is to support people living with arthritis to access self-assessment and reliable health information, and function as a longitudinal research repository for the University of Salford. This requires us to collect some information about you to ensure we can signpost you to relevant health information to help you better self-manage your arthritis and take preventative steps to maintain your health. We also would like to use the information we have gathered from you to inform future research into people living with arthritis to help improve health and social outcomes. In order to access to tailored health information on the MSKHUB,  you will need to register. If you decide to register, we may collect the following types of personal data about you:

1. Information that helps identify you:

To register, you’ll need to create a personal account on the MSKHUB platform. This account enables you to access to self-assessment tools, which will then point you to relevant health information available online. The completed assessments and scores will be saved under your personal profile for your reference. During registration, you’ll be asked to provide your personal email address. We recommend using a nickname or pseudonym to protect your anonymity. Additionally, choose a strong password and a memorable word. The memorable word will assist us in helping you reset your login details in case you forget your password.

Similarly, if you need to reach out to us for any reason, such as asking questions or requesting the deletion of your account, we will use the information provided during registration to authenticate your inquiry. This involves sending you an email to verify these details, ensuring that we can confirm the legitimacy of your request.

2. About you and your arthritis:

During the registration process, we are also collecting some information about you and your arthritis to help us better understand the MSKHUB platform’s user-base, so we can tailor the advice and resources offered on the site more effectively.

These are multiple choice questions and have been thoughtfully chosen to ensure that your identity cannot be directly discerned from the answers you provide. Some of these questions are compulsory and others are optional, so you can choose not to answer.

Compulsory questions are:

• The age group you belong to (e.g., 35-44 years old)
• Type of arthritis or musculoskeletal condition you have been diagnosed with (e.g., Rheumatoid Arthritis)
• Time since you have received this diagnosis (e.g., 2-4 years)
• Have you had any joint/s replaced?
• Your living status (e.g., Alone / With family/spouse or significant others
• Your education level (e.g., degree / diploma / A-level)

3. Sensitive personal data, including:

We acknowledge that we are collecting sensitive personal data, including information about self-declared disability, your ethnic origin, gender identity, and sexual orientation. This data is gathered to explore potential connections between these characteristics and difficulties experienced in the workplace or accessing employment. Our goal is to foster inclusivity on our online platform, and your response to these questions will aid us in gaining a deeper understanding of our user base. It’s important to note that these questions are optional, and each one includes the option to select ‘prefer not to say’ to respect your privacy and choices. Specifically, the questions are:

• Your gender identity (e.g., male / female / non-binary)
• Your sexual orientation (e.g., heterosexual / homosexual)
• What is your ethnic group? (e.g., white / black / mixed)
• Do you consider yourself to have a disability (yes / no)

4. Further questionnaires to provide tailored health information

Our goal is to signpost individuals with arthritis to tailored and reliable health information and support, and achieving this involves completing self-assessment questionnaires to pinpoint specific needs. To facilitate this process, we utilise assessments that have undergone rigorous research, demonstrating validity and reliability specifically within this population. As you can save these assessments on your personal profile, you will also be able to save these as a pdf and if you wish to, also can share with your health professionals on your discretion to inform your treatment options. These questionnaires are all optional for you to complete, and listed below:

          Daily Activities and Participation

1. Evaluation of Daily Activity Questionnaire (EDAQ) for Musculoskeletal Conditions.

   Work Assessments

1. Rheumatoid Arthritis Work Instability Scale (RA-WIS)
2. British English Workplace Activity Limitations Scale (WALS)

   Musculoskeletal Health

1. Musculoskeletal Health Questionnaire (MSK-HQ)

   Psychological Assessments

1. Generalised Anxiety Disorder-7 (GAD-7)
2. Patient Health Questionnaire-9 (PHQ-9)

   Hand and Upper Limb Assessments

1. British Measure of Activity Performance in the Hand (MAPHAND)
2. British Disabilities of the Arm, Shoulder And Hand (DASH)
3. Oxford Elbow Score (OES)
4. Oxford Shoulder Instability Score (OSIS)

   Back Pain Assessment

1. The Keele StartBack Screening Tool (StartBack)

   Hip, Knee and Foot Assessments

1. Oxford Knee Score – Activity and Participation Questionnaire (OKS-APQ)
2. Oxford Elbow Score (OES)
3. Oxford Hip Score (OHS)
4. The Manchester Foot Pain Disability Index

5. Other questionnaires and feedback forms

Occasionally, we may introduce short questionnaires and brief feedback forms to gather additional information about your views and experiences while using the MSKHUB platform. It’s important to note that these surveys are entirely optional, meaning you have the choice to decline participation. However, your responses, if provided, will play a crucial role in guiding us toward implementing necessary changes to ensure that the platform aligns with its intended purpose effectively. Your input is highly valued, and we appreciate your consideration in contributing to the enhancement of the MSKHUB platform.

6. Use of online identifiers like cookies and IP addresses

Some personal data may be collected about you from the forms you complete online, from records of our correspondence and phone calls and details of your visits to our website, including but not limited to personally identifying information like Internet Protocol (IP) addresses. MSKHUB from time to time may use such information to monitor site visits. MSKHUB may also collect statistics about the behaviour of visitors to its website, such as which information is accessed more frequently.

MSKHUB website uses cookies, which is a string of information that a website stores on a visitor’s computer, and that the visitor’s browser provides to the website each time the visitor returns. Software is used to help the MSKHUB identify and track visitors and their website access preferences. The MSKHUB website visitors who do not wish to have cookies placed on their computers should set their browsers to refuse cookies before using the MSKHUB website. 

Rights to Privacy

We appreciate an individual’s right to privacy and in all situations, we strive to achieve a balance between protecting that right and confirming that we have the correct information to ensure we can provide an exceptional experience for all.

Under the GDPR a number of new principles mean that individuals have greater rights concerning their information and how it is used (see Data Subject Rights). We have detailed an overview of these principles below.

Personal Data

Upon your registration to the MSKHUB, you consent us to maintain a dialogue with you until you either optout (which you can do at any stage) or if we decide to cease providing this service. The MSKHUB, also acts on behalf of the University of Salford in the capacity of data processor. When working exclusively as a data processor, MSKHUB will be acting on the instruction of the University and will work hard to ensure that the data collection processes are fully GDPR compliant. As well as determining the means by and purposes for which that data is processed, the University of Salford is the Data Controller, and is legally responsible for the transparent, lawful, secure and fair collection of your personal information. The University of Salford will:

• Ensure data is accurate
• Collect it for legitimate purposes that are clearly stated
• Provide ability for amends / deletion of data
• Not keep data without reason or if consent is withdrawn
• Not to re-use data for a different purpose other than that for which it was obtained, and permission given

Informed Consent

Through agreeing to this privacy notice you are consenting to MSKHUB processing your personal data for the purposes outlined. You can withdraw consent at any time by completing the online form GDPR Checklist or by phoning +44 (0) 161 295 0211 or e-mailing MSKHUB@salford.ac.uk . Please see last section for full contact details.

Who has access to your personal data

The University of Salford is the sponsor for this study based in the United Kingdom. We will be using information from you to improve the resources provided on the MSKHUB platform and to inform future research into supporting working people with arthritis. The University of Salford acts as the data controller for this study. This means that we are responsible for looking after your information and using it properly.

We will follow ethical and legal practice. We will handle all information about you in confidence. All information which is collected about you on the MSKHUB platform will be kept strictly confidential and only the authorised staff involved in managing the MSKHUB platform will have access to your personal data.

How long we store your personal data

MSKHUB will ensure that personal data is not kept for longer than is necessary. It will process personal data during the duration of any registration and will continue to store only the personal data needed for six years after the registration has expired to meet any legal obligations in accordance with the University of Salford guidelines. Data will also be extracted from MSKHUB, and anonymised for research purposes, so it can no longer traced back to the individual. The anonymised data will be retained in a spreadsheet format, securely stored at the University of Salford, for audit and research purposes. As MSKHUB may disclose your personal information to meet legal obligations, regulations, or valid governmental request.

Data storage

The servers hosting the MSKHUB website are physically located in London, UK and managed by the Gas Mark 8 Ltd, our third-party digital partner. This ensures that your data is processed and stored under the UK’s robust data protection regulations.

Standard contractual terms and conditions are in place detailing the obligations for both the data controller(s) and data processor(s). The third party must provide sufficient guarantees on how it will process and protect the data before any data is shared. Third parties processing personal data on behalf of the University are required to provide assurance that staff have received appropriate training.

Accountability

MSKHUB is sponsored by the University of Salford, which has appropriate measures and records in place to be able to demonstrate compliance with the accountability principle. This includes recording decisions relating to data sharing, implementing data protection policies and taking a “data protection by design” approach. The University documents its records of processing.

The University, as Data Controller, exercises overall control over how and why personal data are processed. The University has a Data Protection Officer who monitors compliance with the Regulations, advises on data protection obligations and acts as a contact point for the Information Commissioner’s Office (ICO).

Your rights to the data we collect, hold and process

A data subject is any person whose personal data is being collected, held or processed. Data subjects have a number of rights in relation to the way we process their personal data. At any point whilst the MSKHUB is in possession of or processing your personal data, all data subjects, have the following rights:

• the right to be informed about the collection and use of their personal data.
• the right of access to their personal data.
• the right to rectification: to have inaccurate personal data rectified, or completed, if it is incomplete.
• the right to erasure, also known as the right, to be forgotten.
• the right to restrict processing.
• the right to data portability.
• the right to object to the processing of their personal data
• rights in relation to automated decision making and profiling.

You can withdraw consent at any time by completing the online form GDPR Checklist or by phoning +44 (0) 161 295 0211 or e-mailing MSKHUB@salford.ac.uk .

The University ensures that there are procedures in place for the assessment, management and monitoring of all individual rights requests. In the event that the MSKHUB refuses your request under rights of access, we will provide you with a reason as to why, which you have the right to legally challenge.

To access what Personal data is held, identification will be required.

MSKHUB will accept the following forms of ID when information on your personal data is requested:

A copy of your driving licence, passport, or a birth certificate and a utility bill showing the home address not older than three months. A minimum of one piece of photographic ID listed above and a supporting document is required. If the MSKHUB is dissatisfied with the quality, further information may be sought before personal data can be released.

All requests should be made using the GDPR checklist, or by emailing to the MSKHUB@salford.ac.uk or by phoning 0044 (0) 161 2950211. You can also write to us at the address below.

MSKHUB
Professor Yeliz Prior
Brian Blatchford
Frederick Road Campus
University of Salford
M6 6PU

Complaints

In the event that you wish to make a compliant about how your personal data is being processed by the MSKHUB or its partners, you have the right to complain to the University of Salford using the contact details below. If you do not get a response within 30 days you can complain to the ICO.

The details for each of these contacts are:

Melanie Earp, Data Protection Officer
Legal and Governance Directorate
Maxwell 5th floor
University of Salford
M5 4WT

Or email foi@salford.ac.uk

Additionally, you have the right to lodge a complaint with the Information Commissioner’s Office (“ICO”)

ICO

You can contact them by calling 0303 123 1113 or go online to https://ico.org.uk/make-a-complaint/ or by completing the online form at the https://ico.org.uk/make-a-complaint/data-protection-complaints/data-protection-complaints/ Please note we can’t be responsible for the content of external websites.

Date of last review: October 2023