Frequently asked questions

What is a Citizen Scientist?

A Citizen Scientist is a person who wants to help ask and answer scientific questions. Anyone who is curious about science and the world we live in, and wants to contribute to collecting data, can be a Citizen Scientist.

What is long COVID?

Long COVID is the name given to a combination of symptoms that linger for at least 3 months after someone gets COVID. These symptoms may include, but are not limited to, brain fog, fatigue, breathlessness, headaches, ringing in the ears, and loss of taste and smell.

What is a research question?

Sound research questions are the foundation for uncovering the burden of long COVID symptoms. These questions guide the research design and analysis. Asking the right questions can help to get the right answers. Great questions can lead to important discoveries.

What is a data point?

A data point is any piece of information provided by a person. This information helps scientists to better understand the experiences of people living with long COVID. Each piece of information (data point) helps scientists ask better questions and develop better ways to manage long COVID symptoms.

What are the potential benefits of contributing to the long COVID Patient Experience Project?

COVID has affected many people and although most will have mild symptoms that go away completely, some will have symptoms that remain for a long time. As long COVID is a new condition, we need to learn with and from the people who live with it. By sharing your first-hand experience with long COVID symptoms, you can help scientists gain insight into what questions need to be asked and answered to help people like you.

As we collect information, the Citizen Science team will share graphs and other results that will help you compare your experiences to other people who are also living with long COVID. Your contributions are important and appreciated.

How is my privacy protected?

The information you share will be stored on the secure environment of Population Data BC. This means your personal information (personal data - e.g. your email address) will be stored on a different computer environment from the content data - the information that you share that describes you (e.g. age or gender), and your answers about symptoms. Keeping the two types of information separate helps to protect your privacy. Only the information with your personal information removed will be used for research purposes. Please refer to the privacy policy for more information.

What personal information do we collect and how is it used?

We collect your email address to set up your account so that you can return to share your experiences with long COVID symptoms anytime you like. This information is stored securely and separately from the content data (that is, the survey responses) you provide. Additionally, we collect your partial IP address (your computer’s ‘address’). This means we will not collect the entire IP address, and so we will only have information about what region you are in (that is, your city and not your street). Please refer to the privacy policy for more information.

Where will my information be stored and analyzed?

To ensure that your information is kept secure, your answers to the questions, your email address and your personal health number will all be stored separately from each other. Also, only part of your computer IP address (your computer’s ‘address’) will be collected – only the city/region and not your street. Please refer to the privacy policy for more information.

We adhere to all relevant legislation regarding Personal Information, including the BC Freedom of Information and Protection of Privacy Act.

Can I withdraw from the Citizen Science project?

You may withdraw at any time and may choose between two types of withdrawal:

Withdraw but allow the Citizen Science team to retain data already collected about you.
Withdraw and request all data already collected about you be destroyed. No additional data will be collected about you.

In both cases, no additional data will be collected about you.

Please email [email protected] in order to request either one of these options.

*It should be noted that once the data is made publicly available, you will not able to withdraw this data.

Can I look at the information that I give after I give it?

Your answers will be stored safely – neither you nor anyone else can change them after they are submitted (all information will be stored on the secure computer environment of Population Data BC). As more people share their information, we will be able to share the combined results (graphs and other images) on the Citizen Science website to show how long COVID is affecting people.

What will my information be used for?

Information about symptoms will be used by health scientists to ask and answer research questions about long COVID. By sharing your first-hand experience with long COVID symptoms, you can help scientists gain insight into what questions need to be asked and answered in order to help people like you.

Will my information be published?

No information that identifies you will be published– this means that no one will know who contributed information and what information they gave.

What is the difference between personal and content data?

Personal data is any information that can be used to personally identify an individual, such as your name. The personal data collected by this website are your email address and your personal health number. Content data refers to information such as your age and gender, as well as your answers to the questionnaires.

Who is funding the research?

The Citizen Science project and Long COVID Patient experience project were funded by the Michael Smith Health Research BC SUPPORT Unit, Knowledge Translation and Implementation Science Methods Cluster, and Data Science and Health Informatics Methods Cluster. This project is being undertaken in conjunction with the Post-COVID-19 Interdisciplinary Clinical Care Network (www.phsa.ca/postCovid).

Where is the research being carried out?

This research is being carried out at the University of British Columbia, BC Canada.

Who are the key partners on the project?

The Citizen Science project team is multi-disciplinary. That means that the researchers have different areas of expertise. The team includes:

Please see the team descriptions to learn more about the people involved in this project.

What are the potential risks associated with taking part in the long COVID Patient Experience Project?

All the information you share on the Citizen Science website is stored in a secured server located at Population Data BC. To minimize the risk of anyone identifying you to your answers to the questionnaires, your email address and your personal health number will be stored separately from your answers.

How much symptom information do I have to share?

You may share as much information as you would like. The questions are separated into different sections such as your work, your experience with COVID-19 and categories of symptoms like shortness of breath, cough, brain/nerve symptoms, and fatigue. You can choose what sections and what questions you would like to answer. The more you answer, the better health scientists can understand what it is like for you to live with your symptoms. Consider coming back and letting us know if and how your symptoms are changing. Because long COVID is so complex and poorly understood, sharing as much information as you can about how your symptoms change can help scientists to ask and answer research questions that will help you and others.

How long does it take to answer each section?

We know that people living with long COVID can find it challenging to focus for long periods of time – they often need to take a break because symptoms like fatigue and brain fog can get worse when concentrating. So, please feel free to answer as many questions as you are comfortable with, take a break and then come back to answer more questions when you are feeling a little better.

In the final section, Share your story, you can tell us as much as you want: a little or a lot!

Will I get any feedback about the results?

Good research takes time to do well, and so you and all the other Citizen Scientists will likely have to wait for months, or perhaps years, to see the final results of studies that use the information that you share. As the Citizen Science platform collects information, the team will share on the website some results (graphs and other images) to help you see how your experiences with long COVID are both similar to and different from other people’s experiences with long COVID. Remember to visit the website often to share how your symptoms are changing, see updates, and learn how this collective information is helping scientists understand long COVID.

Can I stop sharing information?

Yes, you can stop sharing information and withdraw from the project at any time. You can simply stop using the website or delete your account whenever you want.

Please contact the research coordinator at [email protected] or call 1-844-707-4053 if you want to delete your account.

Can my data or account be deleted?

As a guest user: Once you have submitted (sent) the answers to the questionnaires by either leaving the site or finishing a section, your answers (content data) cannot be deleted.

As an account holder: You have two options for deleting your account.

Delete only your personal identifiable information and keep your answers to the questionnaires.
Delete both your personal identifiable information and your answers to the questionnaires.

*Note: If you choose to delete your account and later want to re-join the project, you will not be able to access your previous level progress or points you had accumulated from your previous account.

Please contact the research coordinator at [email protected] or call 1-844-707-4053 if you wish to delete your account.

What web browsers/IOS does Citizen Science support?

Desktop:

Chrome
Firefox
Safari
Microsoft Edge

Mobile:

Chrome
Safari

What happens if I forget my password?

You have 10 chances to get your password right. If you cannot remember your password, the forgot my password link will allow you to reset it. This link will walk you through the steps to recover your password.

Will Citizen Science share my personal information with anyone else?

No. Your personal information will not be shared with a third party. Citizen Science uses Matomo Analytics to collect information about your visit that allows us to make improvements to the website and personalize your experience. Data collected from Matomo Analytics will be stored directly on the servers of Population Data BC. Refer to the privacy policy for more information.

Why do I need to enable cookies on my web browser? How do I clear cookies or my cache?

By enabling cookies, you allow the browser to store information, making it easier to visit the site later. Matomo Analytics also uses these cookies to generate reports for our site. Refer to the privacy policy for more information and how to manage this feature. To clear your cookies and cache, go to your browser settings.

Who do I contact if I have any questions or concerns about my rights as a participant?

If you have concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line at the University of British Columbia Office of Research Ethics by email at [email protected] or by phone at 604-822-8598 (Toll free: 1-877-822-8598). Please reference the study number (H19-03866) when calling so the Complaint Line staff can better assist you.