You are being invited to record cough and voice samples and to respond to a series of questions about your health-related parameters and health status to be submitted and stored in a research database (the ‘Cough Database’). The Cough Database will be used to help us and, if you agree separately, other researchers develop algorithms to detect COVID-19 from voice. You may terminate the session at any time, without submitting your information. Your information will be treated in accordance with this Information Sheet and data protection law.
The data collection is organised by:
Gemma House 39 Lilestone Street, Marylebone, London
What is the purpose of the data collection?
We are going to use all the data you submit solely for the following purposes and always subject to your explicit consent which we collect before you begin the survey. You can withdraw it together with the submitted information at any time by writing an email to the address outlined above.
MAIN PURPOSE: This study aims to collect cough and voice samples from COVID-19-infected human subjects, and controls, along with minimal related demographic and medical information, to help the development of algorithms detecting and monitoring COVID-19, and other respiratory diseases, from voice and cough. Given the widespread nature of the disease and the severe shortage of testing facilities around the world, if such a system were to be developed, it would give millions of people the ability to monitor themselves cheaply, and potentially save thousands of lives. In order to develop robust detectors for COVID-19 using voice, a large-scale collection of voices from thousands of diagnosed COVID-19 patients will be necessary. By consenting to this collection, you will be contributing to that effort. Importantly, this study is not providing you with any health advice or diagnosis regarding COVID-19 or any other conditions – it’s only purpose is to help the development of medical algorithms potentially used in the future.
SECONDARY PURPOSE: At the end of the survey you will be assigned a unique reference number. Unless you make note of that number, we won't be able to identify the dataset you have submitted. However, if you decide to provide us with some basic contact details, such as an email address, we will link that to your dataset so that we can identify it and, at your request, delete or modify it.
THIRD PURPOSE: At the end of the survey you will be asked whether you allow us to share the dataset you have submitted with other, vetted researchers who can use it for the same purpose as the Main Purpose. This will significantly accelerate research into detection and monitoring of COVID-19 or other respiratory diseases on the basis of cough and voice samples.
FOURTH PURPOSE: At the end of the survey you will be asked whether you allow us to share the dataset you have submitted with other, vetted commercial researchers who can use it for the same purpose as the Main Purpose.
What is the required information for the purposes of the study?
The survey collects the following information, that we consider necessary for the purposes outlined above:
This information will include your:
Who are we going to share the information with?
We will store your information on the cloud. Our storage providers are MongoDB Atlas and Amazon Simple Storage Service. These third parties provide industry-leading data security and will store your information in encrypted form at rest and in transit. Their servers will physically store your information within the European Economic Area or the United Kingdom.
Notified bodies and regulatory agencies such as the Medicines and Healthcare products Regulatory Agency (MHRA) or their representatives might access and review your information where required for legal or auditing purposes in relation to the development of a regulated medical device.
If you consent, we will share your information with other researchers. To access the data other researchers must submit a research proposal for review, and would only obtain access if a proposal is approved and a binding data sharing agreement is executed.
We don't use non-essential 'cookies' or other tracking technology in the webpage that is hosting the survey.
How long are we going to retain the information?
We will only retain your personal data for as long as reasonably necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, regulatory, tax, accounting or reporting requirements. To determine the appropriate retention period for personal data, we consider the amount, nature and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal, regulatory, tax, accounting or other requirements. Please note that under the applicable legislation we are entitled to hold anonymised data indefinitely.
What are your rights in respect of the submitted information?
- Under data protection law, you have various rights in relation to your personal data. All of these can be exercised by contacting us at the email address provided above.
NB! Please keep a copy of your automatically generated reference number or provide contact details at the end of the survey if you wish to exercise any of your rights. Without the number or the email address we won't be able to identify the dataset you have submitted!
You have the right:
- to be informed;
- to access (such information);
- to rectification (of inaccurate information);
- to erasure;
- to restrict processing (in certain cases);
- to object to profiling;
- to data portability (in certain cases);
- to complain to the Information Commissioner’s Office;
- to withdraw consent (if I have collected your personal information on this basis).
Detailed information on the full content of your rights (and any conditions that may apply) is provided by the United Kingdom’s Information Commissioner’s Office and is available on their website: https://ico.org.uk/your-data-matters/.
Other useful information
Expenses and payments
You will not be paid for your taking part in the study. Taking part of the study is not costing you money.
Requirements for participation in the data collection
Participation in this study is limited to individuals age 18 and older.
Participation is welcome from participants who have been tested positive or negative for COVID-19, or from participants who have not been tested yet.
If you show severe symptoms of COVID-19 and/or in a serious or critical condition, please do not participate in the study and ask for immediate medical assistance.
What are the potential risks of taking part in this study?
The risks and discomfort associated with participation in this study are not expected to be greater than those ordinarily encountered in daily life or during other online activities.
If you encounter elevated levels of discomfort during the assessment, you are encouraged to interrupt the assessment and not complete the study.
What are the benefits of participating in this study?
We don’t expect direct personal benefits from filling out the questionnaire, but the help may be of value to humanity.
Is my participation voluntary?
Your participation is voluntary and you are free to withdraw and leave the survey without submitting at any time.
You can withdraw from filling out the study at any point during the survey, before submitting your information. The information you input before you submit the survey will not be saved.
You can ask us at any time to delete the data you submitted by emailing firstname.lastname@example.org with your request. You will need to quote the ID that appears on the last screen of the survey. We will not be able to delete your data based on your name or any other personal information only (as that is not recorded).