Participant Information

SREC Approval Number: 24 07-02

You are being invited to take part in a research project. Before you decide whether to take part, it is important for you to understand why the research is being undertaken and what it will involve. Please take the time to read the following information carefully.

(1) What is the purpose of this research project?

We are undertaking a national survey to understand the experiences of staff with disabilities and living with long-term health conditions and chronic illness, and those who are neurodivergent working in academic, research, technical support and professional services roles within Higher Education institutions in the UK. Participation in this survey is voluntary and anonymous. The data collected will support the development of RIDE HIGHER (Realising the Inclusion of Disabled Employees in Higher Education), a new framework to share best practice across the sector. RIDE HIGHER is a core initiative of NADSN (the National Association of Disabled Staff Networks).

(2) Why have I been invited to take part?

We are inviting participants to take part if they are a member of staff working in a Higher Education institution, with a self-identifying disability or long-term health condition/chronic illness, and/or neurodivergence, whom we believe are able to offer relevant insight towards our project aims. We hope this project will be of interest to you.

(3) Do I have to take part?

No, your participation in this research project is entirely voluntary and it is up to you to decide whether to take part. If you decide to take part, you will be asked to provide your consent. If you decide not to take part, you do not have to explain your reasons and it will have no detrimental effect on you. You are free to withdraw your consent to participate in the research project at any time, without giving a reason. If you choose to withdraw your consent, please refer to Section 9 which outlines what will happen to your data.

(4) What will taking part involve?

If you agree to take part, you will be asked to complete an online, anonymous survey which will ask you some questions about the following: your demographics (age, sex, gender, disabilities/health conditions, ethnicity, etc.), your job role in Higher Education, and your experiences of working in Higher Education with a disability or long-term health condition. We anticipate the survey will take approximately 30 minutes to complete.

(5) Will I be paid for taking part?

No, you will not be paid for taking part in this project. Any data/information you provide will be as a gift and you will not benefit financially now or in the future, even if this project leads to the development of new policy.

(6) What are the possible benefits of taking part?

There will be no direct advantages or benefits to you from taking part, but your contribution will help us understand the experiences of staff with disabilities, neurodivergence, and long-term health conditions and/or chronic illness in academic, professional services, and technical support roles within Higher Education in the UK.

(7) What are the possible risks of taking part?

We do not believe there are any specific risks associated with your participation in this project, but please contact us if you have any concerns.

(8) Will my taking part in this research project be kept confidential?

All information collected from you during the research project will be kept confidential unless there are legal or exceptional circumstances that may require us to make specific disclosures e.g., in order to protect the safety and wellbeing of yourself or others, or to report a crime. Any personal information you provide will be managed in accordance with data protection legislation. Please see next section ‘What will happen to my Personal Data?’ for further information.

(9) What will happen to my Personal Data?

By participating in this project, you will be providing us with Personal Data, including via the consent form. All questions in the survey are optional and include questions about your demographic information (age, sex, gender, ethnicity, job role, etc.). We will not ask you to tell us your name or provide any other contact details (e.g., e-mail or postal address) as part of the research survey. Hence, while we will be collecting some demographic information from you, we will ensure that these data will not make you identifiable as an individual. All data (excluding the consent form) will be de-identified (anonymised) for use in any write-up/output/publication to ensure that your identity remains anonymous. There will be restricted access to selected, anonymised data via the Cardiff University online repository.

Cardiff University is the Data Controller for this project and is committed to respecting and protecting your Personal Data in accordance with your expectations and Data Protection legislation. Further information can be found at https://www.cardiff.ac.uk/public-information/policies-and-procedures/data-protection .

After a minimum of 5 years following completion of the project, the research team will de-identify the Personal Data it has collected from, or about, you in connection with this research project, with the exception of your consent form. Your consent form will be retained securely for the same duration and may be accessed by members of the research team and, where necessary, by members of the University’s governance and audit teams or by regulatory authorities. Completion of the project will have occurred once completion of a project closure report or publishing of final articles has occurred.

If you give us your consent but then withdraw your consent prior to providing any Personal Data, then we will retain only your original consent form confidentially for the duration stated above. Because any Personal Data that you provide will be anonymous, it will not be possible to remove your data from our research project once you have provided this to us if you later choose to withdraw your consent.

(10) What happens to the data and results at the end of the research project?

All de-identified data and information will be kept for a minimum of 5 years following completion of the project in accordance with the University Records Retention Schedule, but may be published anonymously in support of the research project and/or retained indefinitely, where it is likely to have continuing value for research purposes.

It is our intention to publish the results of this research project in academic journals or other similar forums and to present findings at conferences. Publications of any kind arising from this project will be publicly accessible.

Participants will not be identified in any write-up, report, publication or presentation arising from this project. Verbatim quotes from participants may be used in write-ups, publications, presentations, or reports, but these will always be presented anonymously.

(11) What if there is a problem?

If you have any concerns about how you have been approached or treated during this research or if you otherwise wish to make a complaint, please contact:

Mr Kevin Jones

Email: BIOSI-Ethics@cardiff.ac.uk

Phone: 02920 870089

Address: Kevin Jones, School Research Ethics Committee, School of Biosciences, Cardiff University, The Sir Martin Evans Building, Museum Avenue, Cardiff CF10 3AX

(12) Who is leading and funding this research project?

The research is being led by Professor Carol Evans, Cardiff University. The research is not currently in receipt of any research funding.

(13) Who has reviewed this research project?

This research project has been reviewed by the School of Biosciences Research and Ethics Committee (SREC), Cardiff University and has been granted a favourable ethical opinion.

(14) Further information and contact details

We will be using the terminology of ‘persons with disabilities’ throughout this survey as this recognises that disabilities are only one part of a person's identity. Should you have any questions relating to this research project, you may contact Professor Carol Evans via evansc101@cardiff.ac.uk.

(15) Thank you

Thank you for considering taking part in this research project. If you decide to participate, you can request a copy of the participant information to keep for your records.