SHAPE+: Shaping Research in Pain through Equity for 2S/LGBTQQIA+ Communities was important to us as our communities have often been excluded from research and it is time for that to change. This research study is intentional to centre 2S/LGBTQQIA+ voices from data collection to generating and prioritizing research questions. 

2S/LGBTQQIA+ communities refer to individuals who identify as Two-Spirit, lesbian, gay, bisexual, transgender, queer, questioning, intersex, asexual, and/or additional gender and sexually expansive identities.

In citizen science, the public is actively engaged in the scientific process, with the goal of addressing real-world issues by creating research questions, doing experiments, collecting and analyzing data, interpreting results, making discoveries, and/or developing technologies, and mostly importantly, help solve complex health problems.

Citizen scientists are individuals who want to help answer or develop scientific questions. By "citizen", we are refering to global citizens (i.e., humans on planet Earth). If you are curious about science and want to share your experience to help yourself and others, you can be a citizen scientist.

By joining forces with clinicians and health scientists researching pain, you can help us ask better questions and get better answers when researching pain through sharing your experiences.

Currently, once you have submitted your responses you cannot revise or review them. All information will be stored on the secure environment of Population Data BC.

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 pain. Your contributions are important and appreciated.

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

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 is your email address. Content data refers to information such as your age and gender, as well as your answers to the questionnaires.

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 environments 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 three 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.

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

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.

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

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 can help us gain insight into the reality of life for people who live with pain. This can help health us ask the right questions and focus on research that will help people like you.

We collect your email address to set up your account so that you can return to share your experiences with pain 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.

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

This research is also supported by funding from the Canadian Institutes of Health Research (CIHR) Planning Grant and the Arthritis Health Professions Association. It also previously received funds through a CIHR Banting Postdoctoral Fellowship and a Michael Smith Health Research BC Postdoctoral Fellowship.

All the information you provide through the Citizen Science online platform is stored in a secured environment 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.

For the online platform, 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 health scientists to generate more meaningful research questions and find ways to improve your life.

Research takes a long time to do well, and so you and all the other participants 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 have collected more data, we will be able to share graphs and other images on the 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.

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.