Patient Dashboard (PD-IBD) to Improve Complex Care and Self-management of Inflammatory Bowel Disease (IBD)

University of Alberta/University of Calgary

Inflammatory bowel disease (IBD) is a lifelong illness that can be diagnosed at any age but most often afflicts young adults. Patients require multi-dimensional care to address not only control of inflammation but also aspects of the disease that greatly impact their quality of life and their ability to contribute to the workforce, including mental health and wellness. Resources directed to these determinants of health are underfunded in Alberta, and clinicians are not equipped with the tools or time to address the medical and psychosocial needs adequately. The demand for gastrointestinal (GI) services outweighs the supply, resulting in long wait times and creating an inequality in access that particularly impacts the rural population.

To alleviate the pressure points in the current model of care, we propose a provider and patient-targeted digital health intervention in the form of a Patient Dashboard IBD (PD-IBD) built into Connect Care (CC) and the Connect Care (CC) patient portal. The goals of the PD-IBD are to increase clinician efficiency (and therefore capacity), standardize care, and improve outcomes. Moreover, PD-IBD will enable better disease monitoring and clinical decision support using clinical care pathways (CCPs), empower patient self-management with peer-developed patient education and apps directed at wellness, and provide teleconsultation to rural physicians to increase access to gastrointestinal (GI) services.

Significant evidence supporting this innovation originates from a large randomized control trial in the Netherlands, which used a telemedicine system that we have modified to suit the Alberta context. The four elements of our PD-IBD system are disease monitoring, clinical care pathways (CCPs), self management, and remote consultation. During the three-year grant period, we will co-develop the PD-IBD with key stakeholders and implement and evaluate the platform across six communities in Alberta. The anticipated primary outcome will be improvements in quality of IBD care leading to major decreases in gastrointestinal (GI) healthcare utilization and costs.

Roles and Responsibilities
We are looking for adults with IBD and living in Alberta to join a Patient Advisory Council (PAC) and help inform the co-development of a mental health and diet tool for IBD patients in Alberta. In addition to attending regular meetings, PAC member will be asked to support the recruitment strategy for patient participants, co-create question guides and conduct focus group and semi-structured interviews with patient participants aimed at understanding gaps in care in IBD and how digital tools can bridge these gaps, and assess the current use of the Connect Care patient portal), eventual project roll-out, and co-develop patient education content. Training and support will be offered.

Time Commitment
This project aims to start immediately and carry forward for 3 years. There will be more frequent meetings in Year 1 – anticipated to be 1 hour every 1-2 months and then quarterly in Years 2 and 3.
PAC members will be offered additional opportunities to collaborate on project processes.

This is anticipated to be an online opportunity so there are no expenses anticipated for travel and parking.Patient partners will be offered compensation as per AbSPORU guidelines. Link here.

Karen Wong

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Land Acknowledgment

The Alberta SPOR SUPPORT Unit operates on and acknowledges the lands that are the traditional and ancestral territory of many peoples, presently subject to Treaties 6, 7, and 8. Namely: the Blackfoot Confederacy – Kainai, Piikani, and Siksika – the Cree, Dene, Saulteaux, Nakota Sioux, Stoney Nakoda, and the Tsuu T’ina Nation and the Métis People of Alberta. This includes the Métis Settlements and the Métis Nation of Alberta. We acknowledge the many First Nations, Métis and Inuit who have lived in and cared for these lands for generations. We make this acknowledgment as a reaffirmation of our shared commitment towards reconciliation, and as part of AbSPORU’s mandate towards fostering health system transformation.