New Canadian Lupus Research Reveals Awareness and Information Gaps | Lupus Canada
Understanding Lupus Awareness and Information Gaps in Canada
A new Canadian lupus research project supported by Lupus Canada examined how Canadians search for lupus related information online and revealed ongoing awareness and information gaps across the country.
Using Google Trends data from 2004 to 2024, researchers analyzed public interest in lupus over time, regional differences in search activity, and the types of information Canadians most frequently searched for, including symptoms, diagnosis, treatment, and disease management.
The findings suggest that despite advances in lupus research and treatment, public awareness and understanding of lupus may still remain limited, contributing to ongoing challenges related to education, recognition, and diagnosis.
About the Research
The project, GAPS: Google Trends Analysis of Public Interest in SLE, explored lupus related Google search activity across Canada to better understand public awareness, knowledge gaps, and information seeking behaviour.
The research was conducted through a collaboration between researchers from the University of Waterloo, the University of Calgary, patient partners, and Lupus Canada. Researchers analyzed lupus related search trends from 2004 to 2024 using Google Trends data to examine:
- changes in public interest over time
- regional differences in search activity
- common themes in lupus related searches
- rising search topics and queries across Canada
The project also incorporated an integrated knowledge translation approach, which included collaboration with patient partners and community stakeholders throughout the research process.
Why This Research Matters
Many people living with lupus report receiving limited information when they are first diagnosed. Others describe feeling misunderstood by employers, family members, healthcare providers, and the public.
Researchers note that lack of public awareness and education surrounding lupus can contribute to delays in diagnosis, barriers to care, and ongoing health inequities. Many individuals affected by lupus turn to online sources to better understand symptoms, treatment options, testing, disease management, and lived experiences related to lupus.
By examining how Canadians search for lupus related information online, researchers hope to better understand:
- what information people are seeking
- where awareness gaps may exist
- how educational resources can be improved
- opportunities for advocacy and public outreach
- ways to better support Canadians affected by lupus
Key Findings
Search Interest in Lupus Has Remained Relatively Stable Over Time
Researchers found that overall search interest related to lupus did not significantly increase between 2004 and 2024, despite major advancements in lupus research, treatment, and drug approvals over the past two decades.
Celebrity News and Media Coverage Drove Major Search Spikes
The highest spike in Canadian lupus related searches occurred in October 2015 following public news surrounding Selena Gomez’s lupus diagnosis.
Additional increases in search activity were associated with:
- milestones related to belimumab development and approval
- positive Phase II trials for voclosporin
- major lupus related conferences and public news events
Researchers also observed that some important clinical milestones did not generate major increases in public search activity, highlighting potential gaps between scientific progress and public awareness.
Symptoms, Diagnosis, and Treatment Were Among the Most Common Searches
Thematic analysis of lupus related search terms revealed consistent public interest in:
- lupus symptoms
- diagnosis and testing
- medications and treatment
- autoimmune conditions
- lifestyle and disease management
Symptoms emerged as one of the most frequently searched lupus related themes across Canada, particularly within rising search topics and queries.
Search Patterns Varied Across Canada
Researchers identified significant regional variation in lupus related search activity across Canada.
Newfoundland and Labrador showed the highest relative search volume related to lupus, while search patterns and related queries varied between provinces and territories. Some search terms also reflected linguistic and cultural differences, including searches in French and other languages.
Community Dialogue and Next Steps
In May 2024, researchers, patient partners, advocates, and community members gathered in Toronto for a deliberative dialogue focused on the findings of the project and what they could mean for Canadians affected by lupus.
The discussion explored:
- gaps in lupus awareness and education
- inequities in access to care and information
- the importance of patient voices and lived experiences
- opportunities for advocacy and policy change
- ways to strengthen support and outreach across Canada
The findings from this Canadian lupus research project may help inform future educational initiatives, awareness campaigns, advocacy strategies, and patient support efforts designed to better meet the information needs of Canadians affected by lupus.
About Google Trends
Google Trends is a free tool that provides anonymized and aggregated data about online search activity. It allows researchers to examine:
- what people are searching for
- when search activity changes over time
- where searches are occurring geographically
- related topics and emerging search trends
In this project, researchers used Google Trends data to better understand public interest and information seeking behaviour related to lupus across Canada.
Download the Research Poster
Download and explore the research poster:
“Analyzing Google Trends to Discern Information Needs for Canadians with Lupus”
Study: Investigating Canadians’ Information Needs Related to Lupus: A Google Trends Analysis of Online Search Query Data
Authors: Emily Shantz¹, Taylor Williamson¹, Susan Elliott¹, Christine Sperling², May Choi³
¹ University of Waterloo, Geography and Environmental Management, Waterloo, Canada
² Patient Partner, Calgary, Canada
³ University of Calgary, Medicine, Calgary, Canada
Explore Lupus Research and Clinical Trial Opportunities
Research plays an important role in improving lupus care, expanding treatment options, and helping researchers better understand the needs and experiences of people living with lupus.
Lupus Canada is committed to supporting Canadian lupus research, advancing awareness, and improving access to emerging treatment opportunities and clinical trials across the country.
Explore Lupus Canada’s clinical trial resource hub to learn more about ongoing lupus research studies and tools designed to help connect patients with clinical trial opportunities in Canada.