Participant information

Section A: The Research Project

Title of the project: How can health care, eye care and sight loss services help with physical activity?

1) Purpose of study:

We are investigating how health care, eye care and sight loss services can improve the physical activity advice and support given to people with sight loss.

2) Who are the researchers?

Rosie Lindsay, is a PhD student at Anglia Ruskin University, and she is carrying out the research alongside Professor Peter Allen and Dr Lee Smith, who are also based at Anglia Ruskin University.

3) Why have I been asked to participate?

We are looking for adults (aged 18 or over) who live in the UK who are living with sight loss.

4) How many people will be asked to participate?

385

5) Do I have to take part?

No, participation in this survey is voluntary, you can leave the survey at any point if you do not wish to answer the questions, and your responses will not be collected.

6) Has the study got ethical approval?

This study has received ethics approval by the School Research Ethics Panel (SREP) under the terms of Anglia Ruskin University’s Research Ethics Policy.

7) Legislation relating to this study

Agreement to participate in this research does not compromise your legal rights should something go wrong. All information collected by the research team will be stored securely at Anglia Ruskin University in accordance with the GDPR and Data Protection Act (2018) and will only be accessible to the research team members.

8) Source of funding for the research.

There is no source of funding for this research.

9) What will happen to the results of the study?

The results included in the final study will be submitted for publication in a scientific journal, and will be included in Rosie Lindsay’s PhD thesis.

10) Contact for further information

Rosie Lindsay’s email address: rkl109@pgr.aru.ac.uk   

Professor Peter Allen’s email address: peter.allen@aru.ac.uk

Dr Lee Smith’s email address: lee.smith@aru.ac.uk

Section B: Your Participation in the Research Project

1) What will I be asked to do?

You will be asked to complete an online survey which will take approximately 15-20 minutes. The survey will ask you questions about your sight, your age, gender, ethnicity, employment, income, education level, marital status, living arrangement, your physical and mental health, your height, weight and physical activity levels. You will then be asked how often you visit or talk to health care, eye care or sight loss services professionals, and if you would follow physical activity advice from these professionals. Finally, we will ask what resources could help you follow physical activity advice given by a professional, and if you would like to include any other ideas in the survey.

2) In relation to this specific research project, we need to make you aware of the following:

Rosie Lindsay, Professor Peter Allen and Dr Lee Smith are the data controller (we are in sole control over the research).

3) I will be asking you for the following information:

  • Age
  • Employment and Earnings
  • Opinions
  • Racial/Ethnicity data
  • Health

4) What will happen to your data?

Your data will be anonymised. This means your data will be stored under a numerical code. The data will be securely held in a password protected laptop held by the lead researcher. Your data will only be shared with the researchers conducting the study (Rosie Lindsay, Professor Peter Allen and Dr Lee Smith) it will not be distributed to any third parties. Your data will be removed and deleted from our system upon publication of the final study. The final anonymised data may be presented conferences and published in peer-reviewed publications.

 

The survey site’s privacy policy can be accessed here : https://www.jisc.ac.uk/website/privacy-notice

5) Will I receive any payment to take part in the research?

No, you will not receive payment for taking part in the research.

6) Are there any possible disadvantages or risks to taking part? 

It is not anticipated that participation in the survey will cause boredom, fatigue distress or any other disadvantages to participants. It is also not anticipated that participation in the survey will create any risks to the participant. The participant should be aware that agreement to participate in the study does not affect participant’s legal rights.

7) What are the likely benefits of taking part? 

This information will be used to inform the development of physical activity advice and support provided to people with sight loss.

8) Can I withdraw at any time, and how do I do this?

You can leave the survey at any point if you do not wish to answer the questions and your responses will not be collected. Once you have submitted your answers you will not be able to withdraw from the study as we will not be able to identify your data. If an incomplete survey is submitted, the data provided will still be collected.

9) What will happen to my data?

Our general privacy notice explaining our use of your personal data for research purposes is available here: https://www.anglia.ac.uk/privacy-and-cookies/research-participants. Please visit this link for information about how long we keep your data, how we keep your data secure, how you can exercise your rights over your data, and make a complaint over our use of your data.

10) Can I withdraw my data from the study?

The information I collected from you will be anonymous.  This means that I won’t be able to remove your data, because I won’t know which data belongs to you.

11) Will I pass onto anyone else what you have told me?

No, all information disclosed in the survey will be anonymous and will not be passed on to anyone else. 

12) Summary of research findings

When the study has been published in a scientific journal, a summary of the research findings will be shared with the organisations that helped to share the survey link. Organisations will be able to share a summary of the research findings with their members should they wish to do so.

13) Contact details for complaints:

Participants are encouraged in the first instance to try and reach an informal resolution with the lead researcher (Rosie Lindsay) should they have any concerns. However, they can also contact Rosie Lindsay’s supervisors (Prof. Peter Allen or Dr Lee Smith). If the complaint has not been resolved participants can contact Anglia Ruskin University to file a complaint.

Email address: complaints@aru.ac.uk

Postal address: Office of the Secretary and Clerk, Anglia Ruskin University, Bishop Hall Lane, Chelmsford, Essex, CM1 1SQ.

Version control

Date: 11 May 2021

Version number: V1.15

If you would like a copy of this form and the Participant Information Sheet (11.05.2021, V1.15), you can email the researcher at rkl109@pgr.aru.ac.uk to request it.