A Flexible Care Delivery Model for Arthritis (FlexCAre)
Scientific study title:
FlexCAre: Co-developing a Flexible Care Delivery Model for Inflammatory Arthritis
Why do this research?
The current way that patients receive healthcare for their inflammatory arthritis (IA) is outdated, doesn’t meet patients’ needs, and does not use efficiently the limited rheumatology resources and very effective therapies that are now available. As a result, many people are not receiving the best care available, and this particularly affects people facing social inequities.
Novel ways of delivering care are urgently needed that take advantage of new technologies. We will co-design and test a flexible way of delivering care for arthritis, called FlexCAre, that will use digital health technology to monitor people’s health and tailor care to each person’s situation.
We hope that this will provide personalized care that is truly patient-centered, and better meets each person’s needs; that it will ensure that all people get the highest quality of care available, making care more equitable; while using healthcare resources more wisely.
What will be done?
Our team of researchers will work with patients, families, healthcare professionals and health care decision-makers, to design a new system of delivering care (a ‘model’). Decisions about the care to be received will be decided with patients based on remote monitoring of their health between visits.
Information such as symptoms and laboratory tests will be gathered into a web-based remote monitoring system, which will trigger ‘alerts’ to the clinical team when results indicate a possible need for care (e.g., if lab tests are abnormal or if symptoms have become more severe ). These alerts will guide individualized care by determining when an appointment is set, how care will be received (virtual vs. in-person), and by whom, i.e. which health care professional will be seen (e.g. doctor vs. nurse).
This study will involve multiple steps:
- Engaging with key partner groups, including persons living with arthritis and auto-immune rheumatic diseases; organizations that serve communities at greater risk of health inequities; health care professionals providing arthritis care; clinic administrative staff; health care decision-makers and policymakers; and technical experts.
- Conducting group discussions (focus groups) and one-on-one interviews with patients, healthcare professionals, health care decision-makers and study partners to inform the co-design of the new model and identify essential features needed for the model to be feasible and acceptable to all.
- Conducting discrete-choice experiments, where patients and clinicians are surveyed to identify what matters most to people and evaluate trade-offs people are willing to make when adopting this way of delivering care. .
- Developing and testing the web-based alert system that will be created to monitor patient’s health remotely and guide care.
- Testing the feasibility of implementing FlexCAre in clinical practice
Who is involved?
Persons living with inflammatory types of arthritis, such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, and auto-immune rheumatic diseases, such as lupus, Sjogren’s or scleroderma; health care professionals providing arthritis care, clinic administrative staff, healthcare decision-makers, and researchers.
Importantly, because this work aims to understand how to improve care delivery among people underserved by current ways of delivering health care, we will work with people at risk of health inequities such as recent immigrants, Indigenous and racialized groups, and people with low income, housing insecurity, and living in remote/rural areas, as well as with organizations that serve these communities.
How can people get involved?
We are now recruiting for the focus groups phase of the study. If you are interested in participating click here or email us at flexcare@arthritisresearch.ca.
Study Start Date:
January 2023
Study End Date:
December 2027
Principal Investigator:
Diane Lacaille, MD, MHSC, FRCPC, Scientific Director, Arthritis Research Canada, Professor, Division of Rheumatology, UBC
Co-Investigators:
• Susan Bartlett, Professor, Department of the Medicine, McGill University
• Nick Bansback, Associate Professor, School of Population and Public Health, University of British Columbia
• Claire Barber, Associate Professor, Division of Rheumatology, Department of Medicine and Department of Community Health Sciences, Cumming School of Medicine, University of Calgary
• Cheryl Barnabe, Professor, Division of Rheumatology, Department of Medicine and Department of Community Health Sciences, Cumming School of Medicine, University of Calgary
• Ines Colmegna, Associate Professor, Division of Rheumatology, Department of Medicine, McGill University
• Deborah Da Costa, Associate Professor, Department of Medicine, Faculty of Medicine, McGill University
• Paul Fortin, Professor, Division of Rheumatology, Université Laval
• Glen Hazlewood, Associate Professor, Division of Rheumatology, Department of Medicine, Cumming School of Medicine, University of Calgary
• Alison Hoens, Clinical Professor and Knowledge Broker, Department of Physical Therapy, University of British Columbia
• Cheryl Koehn, Founder and President, Arthritis Consumer Experts
• Linda Li, Professor, Department of Physical Therapy, University of British Columbia
• Laetitia Michou, Associate Professor, Division de rheumatologie, Départment de Médicine, Faculty of Medicine, Université Laval
• Nelly Oelke, Medicine and Community Health Sciences, Faculty of Health and Social Development, University of British Columbia, Okanagan
Patient Partners:
- Dr Terri-Lynn Fox, Blackfoot Confederacy
- Marie-Claude Beaulieu, Patients Intéressés par la Recherche sur l’Arthrite
- Hélène Garceau, Patients Intéressés par la Recherche sur l’Arthrite
- France Gervais, Patients Intéressés par la Recherche sur l’Arthrite
- Mame Awa Lajante, Patients Intéressés par la Recherche sur l’Arthrite
- Shanon McQuitty, Arthritis Patient Advisory Board
- Philippa Mennell, Arthritis Patient Advisory Board
Collaborators:
- Mo Bardi, Clinical Instructor, University of British Columbia; Mary Pack Arthritis Program; Director, Vancouver Downtown Eastside Rheumatology Clinic.
- Marie-Claude Bray, Ministère de la Santé et des Services sociaux (Québec); Direction générale des affaires universitaires, médicales, infirmières et pharmaceutiques.
- Louis Bessette, Assistant Professor, Division of rheumatology, Université Laval; Centre de l’ostéoprose et de rhumatologie de Québec, Groupe de recherche en rhematologie et maladies osseuses; Member, Board of Directors, Association des Medecins Rhumatologues du Quebec (AMRQ).
- Sherman Chan, Director, Family & Settlement Services, Multilingual Orientation Services Association for Immigrant Communities (MOSAIC).
- Catherine Eastwood, Operations Manager, Centre for Health Informatics, Cumming School of Medicine, University of Calgary.
- Jason Kur, Clinical Associate Professor, Division of Rheumatology, University of British Columbia; President, British Columbia Society of Rheumatology; Medical Director, ARTUS Health Centre.
- Waqar Mughal, BC SUPPORT Unit.
- Brent Ohata, Clinical Instructor, University of British Columbia.
- Patricia Patrick, Registered Nurse, Vancouver Coastal Health; Former President, BC Nursing Association.
- Jill Robert, Senior Provincial Director, Bone & Joint Health and Strategic Clinical Network, Alberta Health Services.
- Kamran Shojania, Clinical Professor, Division of Rheumatology, University of British Columbia; Medical Director, Mary Pack Arthritis Program; Chief of Rheumatology, Vancouver General Hospital.
How are Equity, Diversity and Inclusion addressed or taken into consideration?
We will use The Equity, Diversity and Inclusion Action Toolkit for Organizations (Equity, Diversity, Inclusion: Action Toolkit for Organizations (apha.org)) to develop a structure that will ensure EDI in the research.
We will use a gender and EDI lens to guide recruitment and data analysis. Sex and gender identity will be measured using multiple identity options. Because men are under-represented in healthcare-opinion research, we will conduct separate focus groups by gender so that we can have an in-depth understanding of gender-specific needs and other sociodemographic factors that may be related to gender (e.g. age, race, economic status, etc.).
To make sure that individuals involved in the research have different levels of healthcare experience and health knowledge, we will ensure representation during partner engagement and recruitment by inviting a variety of social identities (e.g., race and/or ethnicity, gender, socioeconomic status, location of residence).
Funding Agency
The Arthritis Society
