Question Title

* 1. Introduction
You are being invited to take part in an online survey as part of research carried out by Cork University Hospital. It should take 10-15 minutes to complete.

Before you decide whether or not you wish to take part, you should read the information provided below carefully. You should clearly understand the risks and benefits of taking part in this study so that you can make a decision that is right for you. This process is known as ‘Informed Consent’.

You don't have to take part in this study. If you decide not to take part, it won’t affect your current or future medical care.

Withdrawal of consent will only possible until the survey is completed as responses will then be anonymised and unable to be separated from other responses.

Why is this study being done?
Patient reported outcomes measures (PROMs) are instruments (often questionnaires) used to get a person’s perspective on their health status, including but not limited to concepts such as fatigue, physical functioning, and overall wellbeing.



Advances in technology have made continuous monitoring of patients their own environment possible as well as and analysis of large data sets. This can enable complex analysis of this data to provide information about a person’s overall health status.

Patient perspectives on both aspects of health assessment is understudied, particularly in an era with advances in machine learning, artificial intelligence, and concerns regarding data protection. We seek to assess how patients feel these measures should be integrated into their clinical care and research.

Who is organising and funding this study?
This study is being sponsored by Cork University Hospital and is being carried out by researchers from the Department of Rheumatology.

Why am I being asked to take part?
You are being asked to take part because you are an adult with a chronic health condition and we are keen to hear your views on PROMs and digital devices in health care.

How will the study be carried out?
An anonymous online survey will be used to record responses. There are no direct benefits to taking part in the survey. The survey is entirely anonymous so any data submitted will not be linked to you. It will not cost you anything to take part in the study. The data from the survey will be stored on a password protected file on a CUH computer for 10 years. The results of this survey are anonymous and will be presented to relevant stakeholders in an aggregated manner.



Are there any benefits to me or to others if I take part in the study?
Taking part in this study will not directly benefit you. However, research using your data and information may help us to better understand PROMs and digital devices in healthcare and may result in integration of these into routine clinical care.

Who has reviewed this study?
All patient focused research in Ireland is reviewed by an independent group of people called a Research Ethics Committee, to protect your interests. This study has been reviewed and given favourable opinion by Clinical Research Ethics Committee of the Cork Teaching Hospitals. The REC can be contacted no: 021-4901901, email crec@ucc.ie.

Where can I get more information?
If you need any further information about the study now or in the future, please contact:

Principal Investigator (PI)
Prof Gráinne Murphy
Email: Cliona.cowhig2@hse.ie

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