Citizen Science: A web portal for patients to transform pain research

 

Scientific Study Title:  

Integrated KT 2.0: Development of an Online Citizen Science Portal

 

Principal Investigators:

Linda Li PT, PhD; Professor, University of British Columbia; Senior Research Scientist, Arthritis Research Canada

 

Start Date:

August 2018

 

End Date:

August 2021

 

Why do this research?

Pain affects many people, but it is complex and poorly understood. No one knows more about pain than the people who live with it. Citizen Science is a social movement that gets the public to join forces with health scientists to learn more about pain. By sharing your experiences and theories about pain on the Citizen Science platform, you can help health scientists ask better questions when they are researching ways to better understand and treat pain.

 

What will be done?

You can sign-up or continue to explore the Citizen Science website as a guest user. On the website, you will go through a series of “levels” each with questions asking you about your pain. When you sign-up, you can complete each of these levels at your own time!

If you would like to provide us with feedback on the website, you can register for an over the phone interview to talk about your experience.

If so, you will be given a special link and asked to test the Citizen Science website during a 4 week period. Then, we will invite you to speak with someone on the Citizen Science team to learn about your experiences using the website – what you like or dislike, and how it can be improved. The interview will be 30 minutes long and conducted over the phone.

 

Who is funding this research?

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

 

You may be eligible if you:

  • Have a chronic illness or disability
  • Are 19 years of age or older
  • Live in British Columbia

 

How do people get involved?

Visit https://patientscientist.ca/ to explore our website and make a contribution.

If you would like to test the website and provide us with feedback, please click on the following link to complete an online questionnaire and get access to the Citizen Science website.
Link: https://ubc.ca1.qualtrics.com/jfe/form/SV_3Re9VEy9YVsSFIF

 

Contact:

Amrit Sandhu, Research Coordinator

Phone: 604-207-4032

Email: citizenscience@arthritisresearch.ca

 

Who is on the research team?

 
Co-investigators:

Diane Gromala, MFA, PhD; Professor, Simon Fraser University

Chris Shaw, MSc, PhD; Professor, Simon Fraser University

Leanne Currie, RN, PhD; Professor, University of British Columbia

Erin Michalak, PhD; Professor, University of British Columbia

 

Technology Partner

Tactica Interactive