Frequently Asked Questions

Who can participate in this project?

Anyone in Canada with pain can participate in this project.

What is a Citizen Scientist?

A Citizen Scientist is a person who wants to help ask and answer scientific questions. Regardless of age or experience, anyone who is curious about the world we live in and wants to contribute to science, can be a Citizen Scientist. In this project, Citizen Scientists can give insight into their lived-experiences of pain. This can then allow for the creation of meaningful research questions, co-created by researchers and you- the citizen scientists.

What is a research question?

Research questions are the foundation to research. We have to ask the right questions if we want to get the right answers. The questions guide how the research is done and can lead to important discoveries. For example, you may be curious to ask “What are the most common pain conditions in my age group and region?” or “How do others with similar symptoms manage their pain?” These are some examples of questions you may want to answer.

What is a data point?

A data point is obtained when you answer a single question. This is a piece of information about your pain and as you answer more questions we can gather a greater understanding of your pain experience. In our project, these data points are seen as information to help scientists to better understand how pain affects the lives of people like you. As you answer more questions, you earn more data points which contribute to uncovering the burden of pain.

What is a standardized survey questionnaire?

This project uses a standardized questionnaire which is valid and reliable tool used to capture accurate responses of patients. This means it has been written in an effective way which asks all participants the same questions in an identical format.

What are the potential benefits of taking part in the Citizen Science project?

Many symptoms such as pain, fatigue, and depression are common, but they are also complex and not well understood. By taking part in this project and sharing your first-hand experience, you along with scientists can gain insight into the reality of life for people who live with pain. This can help to ask the right questions and focus on research that will help people like you.

How is my privacy protected?

Confidentiality is very important to us. The data you provide will be stored on the secure servers of Population Data BC. Personal information will be stored on a different server from content data to help protect your privacy. Only de-identified data (data that cannot be traced to a specific individual) will be used for research purposes. Please refer to the privacy policy for more information.

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

The only personal information we collect is your email address, as it is used to confirm your account. 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. 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.

Can I review my response history?

Currently, once you have submitted your responses you cannot revise or review them. All information will be stored on the secure servers of Population Data BC. In the future, when we have more data, we will be able to post graphs and other images on the Citizen Science website to show how pain is affecting you and others.

What will my data be used for?

Data about symptoms will be used to generate future research questions by health scientists interested in learning more about the burden of pain.

Will my data be published?

Any data that is published publicly will be de-identified, meaning the data cannot be linked to you personally.

What is the difference between personal and content data?

Personal data is any data that can be used to personally identify an individual, such as your name. The only personal data collected by this website is your email address. Content data refers to information such as your age and gender, as well as responses to the survey questions. This type of information is collected by this website but is separated from your email address so that it cannot be connected to you.

Who is funding the research?

The Citizen Science project is funded by the BC SUPPORT Unit, Knowledge Translation and Implementation Science Methods Cluster, and Data Science and Health Informatics Methods Cluster.

Where is the study being carried out?

This study is being carried out in British Columbia, 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 Citizen Science project?

All the information you provide on the Citizen Science website is stored in a secured server located at Population Data BC. To minimize the risk of anyone identifying you personally from your survey information, your email address will be stored separately from the rest of the information you provide.

How much symptom information do I have to provide?

There are four levels of questions. Each level asks about a different aspect of pain and how it affects you. You can choose how many questions you would like to answer. The more you answer, the better scientists can understand what it is like for you to live with your pain. Consider coming back and letting us know if and how your pain is changing. Remember, because pain is so complex and poorly understood, providing more information on if and how your pain changes can help scientists to generate more meaningful research questions and find ways to improve your life.

How long does each level take to complete?

  • Level 1: Tell us about yourself (5-15 min)
  • Level 2: Your theory (5-20 min)
  • Level 3: Would you like to track your pain? (1-2 min)
  • Level 4: Share your story (Tell us as much as you want: a little or a lot!)

Will I get any feedback about the study results?

Research takes a long time to do well, and so you and all the other Citizen Scientists will likely have to wait for months, or even years, to see the results of studies that use the information that you share. In the future, when we’ve collected more data, we’ll be able to share graphs and other images on the Citizen Science website that will help all of us to better understand pain. Remember to visit the website often to get updates on new research questions that were generated from the information contributed by everyone.

Can I withdraw from the project?

Yes, you can 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 CitizenScience@arthritisresearch.ca 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 the survey responses by either leaving the site or completing a level, your content data cannot be deleted.

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

  1. Delete only your personal identifiable information and keep your survey responses.
  2. Delete both your personal identifiable information and your survey responses.
*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 CitizenScience@arthritisresearch.ca 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
*Note: Supports versions within the past 6 months

What happens if I forget my password?

You have 10 chances to get your password right. If you cannot remember your password, click here 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 personal information will 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 RSIL@ors.ubc.ca 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.

How do I contact Citizen Science if I have any other questions or concerns?

Please call toll free at 1-844-707-4053 or email CitizenScience@arthritisresearch.ca

Citizen Science Pain Research is funded through the BC SUPPORT Unit

Involved partners include: