Research can play a key role in efforts to transform healthcare systems. Our group’s long-standing research program has been aimed at understanding how to support greater integration and coordination of healthcare services for older adults with complex conditions. Drawing on this experience, we outline seven “lessons from the field” that highlight research-related challenges that may hinder health system transformation. These challenges relate to conducting research in a complex and constantly changing system; co-design approaches that are simultaneously deemed essential yet too ambiguous to fund; patient, family caregiver, and citizen engagement; limited funding for health systems research; and lack of use of research findings. We hope that these reflections will help to inform an ongoing conversation about how these challenges might be overcome.
Background There are many mobile health (mHealth) apps for older adult patients, but research has found that broadly speaking, mHealth still fails to meet the specific needs of older adult users. Others have highlighted the need to embed users in the mHealth design process in a fulsome and meaningful way. Co-design has been widely used in the development of mHealth apps and involves stakeholders in each phase of the design and development process. The involvement of older adults in the co-design processes is variable. To date, co-design approaches have tended toward embedding the stakeholders in early phases (eg, predesign and generative) but not throughout. Objective The aim of this study was to reflect on the processes and lessons learned from engaging in an extended co-design process to develop an mHealth app for older adults, with older users contributing at each phase. This study aimed to design an mHealth tool to assist older adults in coordinating their care with health care professionals and caregivers. Methods Our work to conceptualize, develop, and test the mHealth app consisted of 4 phases: phase 1, consulting stakeholders; phase 2, app development and co-designing with older adults; phase 3, field-testing with a smaller sample of older adult volunteer testers; and phase 4, reflecting, internally, on lessons learned from this process. In each phase, we drew on qualitative methods, including in-depth interviews and focus groups, all of which were analyzed in NVivo 11, using team-based thematic analysis. Results In phase 1, we identified key features that older adults and primary care providers wanted in an app, and each user group identified different priority features (older adults principally sought support to use the mHealth app, whereas primary care providers prioritized recoding illnesses, immunizations, and appointments). Phases 2 and 3 revealed significant mismatches between what the older adult users wanted and what our developers were able and willing to deliver. We were unable to craft the app that our consultations recommended, which the older adult field testers asked for. In phase 4, we reflected on our abilities to embed the voices and perspectives of older adults throughout the project when working with a developer not familiar with or committed to the core principles of co-design. We draw on this challenging experience to highlight several recommendations for those embarking on a co-design process that includes developers and IT vendors, researchers, and older adult users. Conclusions Although our final mHealth app did not reflect all the needs and wishes of our older adult testers, our consultation process identified key features and contextual information essential for those developing apps to support older adults in managing their health and health care.
COVID-19 has disproportionally impacted older adults, and has highlighted many issues, including extreme deficiencies in Canadian long-term care homes and gaps in home and community care services for older adults. In recent years, there has been a push towards better patient and family engagement in health system research, and with the onset of the pandemic, engaging older adults in research and policy planning is more important than ever. In this article, we describe the Seniors Helping as Research Partners (SHARP) approach to engagement with older adults as an example of how partnerships that engage older adults in the development of research aims and processes can help to ensure that future research meets the needs of older adults. SHARP members highlighted a number of areas for future COVID-19 research such as improvements to long-term care, enhancing access to home and community care, and a focus on aging and social isolation.
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