bant- Digital Care and Research in the Hands of the Patient
Dr. Shivani Goyal & Dr. Joseph Cafazzo
The rising prevalence of all forms of chronic disease continues to outstrip the health care system’s ability to provide comprehensive preventative and management strategies. The smartphone is an increasing popular consumer device for accessing health information, becoming ubiquitous in many global regions, including developing countries. Even with the elderly, it is often their most important device for their personal security.
While the use of information technology for chronic disease management has been attempted, it has only resulted in implementation difficulties, high cost, and unclear effects on health outcomes. Most tactics are predicated on continuing to add health care services in primary and community care settings. However, if the health care system is to be more pragmatic in the delivery of services in an era of fiscal constraint, the alternatives must include tactics that employ a greater role of the patient and their informal caregiver in the management of chronic illness. There are simply too few resources in the existing health care delivery system to comprehensively provide disease management services on a regular and timely basis.
The use of mobile health applications (apps) has followed this popularity, with tens of thousands of apps already on the market. These first attempts at self-care through the use of mobile health apps have garnered much attention, if not evidence to their effectiveness. Apps that have been designed and developed based on existing clinical evidence of behaviour change and disease management are starting to demonstrate true efficacy.
Since 2010, eHealth Innovation at University Health Network has iteratively designed, developed, and evaluated bant, a digital platform for diabetes self-management. bant has been the subject of rigorous user-centered design process methods and was one of the first apps of its kind to be released on the app store free of charge. The app has since been iteratively updated to incorporate evolving patient expectations, and benefits from both the findings in literature and the results from clinical trials.
bant’s design has won numerous awards including the Stanford Med 2.0 award (Palo Alto, CA) and the mHealth World Congress Peoples’ Choice award (Boston, MA). It combines a modern, friendly design with unique features such as a novel data entry and visualization of blood glucose readings, and multi-lingual support. The goal is to simply illustrate how everyday behaviours, such as activity levels and diet, directly affect glycemic control.
In 2012, we conducted a pilot of previous version of bant among adolescents living with type 1 diabetes at SickKids Hospital, and showed a 50% improvement in their frequency of blood glucose measurements. A recent one-year randomized controlled trial at SickKids and Trillium Health Partners hospitals demonstrated that bant provided those adolescents testing their blood glucose frequently, with the means to better interpret their data, driving behaviour change and improved clinical outcomes. However, sustained engagement with the app and motivation for those not testing frequently, remained a challenge. Much like the rest of the digital health space, apps as standalone platforms do not elicit the levels of patients engagement needed to drive change. These apps need to be embedded into clinical care, and integrated within the ecosystem, enabling patients and providers to participate in shared management and decision making.
Building on the validated approaches used in bant, the app was recently expanded to support the self-management of those living with type 2 diabetes. This patient demographic requires an approach that deemphasizes frequent self-monitoring of blood glucose, and focuses on delivering diabetes specific actionable knowledge. To emphasize the impact of lifestyle behaviours on glycemic control, the app facilitates structured self-monitoring of blood glucose around key events, such as meals and physical activity. This context-specific approach will facilitate personalized feedback, and improved self-awareness. In 2017, the systematic design of bant was highlighted by the annual Advanced Technologies and Treatments for Diabetes (ATTD) yearbook as an example of designing patient-centered and evidenced based digital tools for diabetes care.
We are expanding bant beyond a self-management tool, and towards a portal for patient-driven diabetes self-care, where individuals can 1) access other sources of related health information, such as lab results, through integration with provincial data repositories, 2) securely communicate with their providers at critical moments, and 3) easily engage in cutting-edge research initiatives across the country.
Integration with Provincial Assets
In Ontario, bant will integrate with the Ontario Laboratory Information System, a centralized repository. This will enable patients to receive their diabetes related lab data, such as hemoglobin A1c and lipids, directly to their mobile device, and more importantly, in the context of their diabetes data. Beyond enabling improved patient access to their health data, this approach will also potentially enable patients to better contextualize their lab data in the context of their overall diabetes self-care.
Integration with TELUS’s Personal Health Record
As part of a collaboration funded through the Health Ecosphere (a Federal Economic Development Agency of Southern Ontario collaborative), bant will be integrated with TELUS’s Personal Health Record (PHR). The goal of this project is to provide consumers with a single consolidated dashboard (PHR) where they can view their mobile app data along side their clinical information. The vision is to leverage this integration as exchange hub where select data could flow bi-directionally from bant to EMRs, enabling patient access to clinical data (e.g. labs) and provider access to patient reported outcomes (e.g. overall lifestyle behaviours). TELUS is in the process of securing the provincial uptake of their PHR in various jurisdictions, which will propagate the uptake of the integrated bant-PHR solution.
Research at Scale
Building on the existing foundation of the bant platform, UHN is developing an eConsent platform, which mimics the features of Apple’s ResearchKit, but will offer a more robust and user-friendly framework for recruitment into large scale research studies. This framework enables patients to view relevant research studies, opt-in, consent, and control which data types are shared, directly on their mobile device; and researchers to remotely collect patient reported outcome measures (PROMS) and administer study questionnaires/surveys at the desired frequency, directly on the patient’s mobile device (see figures below). This infrastructure will enable researchers to: 1) more easily identify patients based on study criteria; 2) present patients with targeted research opportunities and interventions; 3) obtain consent and enroll patients directly through the system, eliminating the logistics of going to a physical site and addressing the inefficiency of current opportunistic recruitment methods; and, 4) link patient reported outcomes and research data within the Diabetes Repository.
Diabetes Action Canada National Diabetes Repository
The current Diabetes Repository aggregates de-identified data collected from primary care EMRs. In addition to include claims data (from ICES in Ontario), we will also be including data collected through bant, such as blood glucose values, lifestyle behaviours, and patient reported outcomes. With the appropriate consent mechanisms in place, the goal is to enable bidirectional data exchange, such that patients are able to receive relevant data collected in the repository. This database will also support the development of the research network described above, as well as consent management.
The expanded bant platform is the basis for establishing timely communication, shared decision-making between patients living with diabetes and providers and promotion of self-management. We are looking forward to working with Diabetes Action Canada investigators and collaborators on co-designing meaningful diabetes care experiences and pragmatic evaluations, in order to accelerate the delivery of novel diabetes tools directly into the hands of patients.