Managing Lupus and you: Navigate your journey with MyLupusGuide – Part II

Scientific Study Title: Dissemination of the Lupus Interactive Navigator – Measuring its uptake and impact on global health and self-care.

Principal Investigator: Paul Fortin, MD, MPH, FRCPC, Research Scientist, Arthritis Research Canada; Tenured Professor and Canada Research Chair on Systemic Autoimmune Rheumatic Diseases, Centre de Recherche, Université Laval

Start Date: September 2016    End Date: August 2018

Why do this research? The Lupus Interactive Navigator, now renamed MyLupusGuide has been developed with the goal to provide reliable and easily accessible information to people with lupus.  MyLupusGuide provides relevant information, resources, support, video interviews of patients and health care providers, and other tools to help manage lupus. It is available in both French and English.  It is accessible by Internet and compatible for use with desktop PCs, tablets, and Smartphones.  This study will investigate whether people with lupus will use the information and services of the MyLupusGuide regularly and whether that use leads to better self-management, improved coping, a higher sense of control over life, and overall improved health.

What will be done? To allow us to compare results between those who have access to MyLupusGuide with those who do not have access, we chose a study design where participants from different centres would have a fifty-fifty chance of accessing the MyLupusGuide website either immediately (NOW group) or in three months (WAIT group). At the beginning of the study all participants will complete a questionnaire.  We will then randomize them to either the LIN_NOW group or the LIN_WAIT group.  Once participants gain access to MyLupusGuide they will receive news bulletins with information about current topics of interest including, news items and research findings.  Participants will complete additional questionnaires at 3 months and 6 months.  At the end of the study, we will give all participants access to MyLupusGuide.

Who will be involved? – The MyLupusGuide research team consists of a lupus clinical expert and researcher, a clinical psychologist and behavioral researcher, and a health information specialist.  We will work with several stakeholders for dissemination: Lupus Canada, the Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS), the Arthritis Alliance of Canada, and lupus patient advisers.  This study is being conducted in 10 Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CaNIOS) centres across Canada.

Co-Principal Investigators: Deborah Da Costa, MA, PhD, Associate Professor, Department of Medicine, McGill University; Vinita Haroun, MSc, Research, Innovation and Knowledge Mobilization Leader, Ontario Long Term Care Association

Co-Investigator: Elham Rahme, PhD, Associate Professor, Department of Medicine, McGill University

Funding Agency: This study is funded by the Canadian Institutes of Health Research (CIHR)

Participation in the study: We launched this study on October 30, 2017 and have now closed it to recruitment.


  1. Neville C, Da Costa D, Rochon M, Peschken CA, Pineau CA, Bernatsky S, Keeling S, Avina-Zubieta A, Lye E, Eng D, Fortin PR (2016) Development of the Lupus Interactive Navigator as an Empowering Web-Based eHealth Tool to Facilitate Lupus Management: Users Perspectives on Usability and Acceptability. JMIR Research Protocols. 2016;5(2):e44.
  2. Neville C, Da Costa D, Rochon M, Eng D, Fortin PR (2014) Toward the development of a lupus interactive navigator to facilitate patients and their health care providers in the management of Lupus: results of web-based surveys. JMIR Research Protocols. 2014;3(4): e65.
  3. Neville C, Da Costa D, Mill C, Rochon M, Arch B, Aviña-Zubieta JA, Pineau CA, Eng D, Fortin PR (2014) The needs of persons with lupus and health care providers: a qualitative study aimed toward the development of the Lupus Interactive Navigator™. 2013;23(2): 176-182.

Link to ROAR video presentation of Dr. Fortin presenting on the MyLupusGuide