Clinical Adoption of mHealth Technology to Support Pediatric Cystic Fibrosis Care in Sweden: Qualitative Case Study

Abstract

Background Mobile health (mHealth) technologies have potential to improve self-management and care co-ordination of pediatric chronic diseases requiring complex care, such as cystic fibrosis (CF). Barriers to implementation include the lack of support and infrastructure to use mHealth in the clinical microsystem. Coproducing mHealth technology with patients, clinicians, and designers may increase the likelihood of successful integration into the clinical setting. Objective This study explored the development, adoption, and integration of a new, co-produced mHealth platform (Genia) for the management of pediatric CF in Sweden. Methods A retrospective, qualitative case study approach was used. The case was defined as the process of introducing and using Genia at the Pediatric Cystic Fibrosis Center at Skåne University Hospital in Lund, Sweden. Data sources included interviews, presentations, meeting notes, and other archival documents created between 2014 and 2017. To be included, data sources must have described or reflected upon the Genia adoption process. Iterative content analysis of data source materials was conducted by 2 qualitatively trained researchers to derive themes characterizing the mHealth clinical adoption process. Results In total, 4 core themes characterized successful clinical integration of Genia in Lund: cultural readiness to use mHealth; use of weekly huddles to foster momentum and rapid iteration; engagement in incremental “Genia Talk” to motivate patient adoption; and co-design approach toward pediatric chronic care. Conclusions Principles of quality improvement, relational co-ordination, user-centered design, and coproduction can facilitate the integration of mHealth technology into clinical care systems for pediatric CF care.

A qualitative study of design stakeholders’ views of developing and implementing a registry-based learning health system

“…The way that I see the basics of this, is that you know we are putting patient-reported data, […] and some of the clinically collected data, on the same playing field. (1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15)(16) In the follow-up (phase 2) interviews, participants suggested thinking of the clinical encounter as involving two experts: the clinician, an expert in biomedical knowledge, and the patient, an expert in their own experience of living with a life-limiting illness. It was proposed that this reconfigured relationship would result in new forms of partnership.…”

“…I think of it as the lead team […] we have involved interdisciplinary clinical teams, including patients and family members in each of those five settings, they are the lead teams that are looking at this model that we are looking at, and coming to understand it, and helping to decide what those dashboards look like, what the information technology solution approach will be and the CF Foundation is at the table as well. (1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15) Participants consistently identified the key stakeholders in the project as the patients and their families, the care team, and the Cystic Fibrosis Foundation, as well as senior executives in individual organizations. Others included electronic health record vendors, specialist pharmacies, researchers, and regulators and payers.…”

“…To help make decisions about how well the treatment plans are working, to help inform the conversation about the best next steps in the treatment plan, based on patient preference and evidence base. (1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15) Participants identified that for these goals to be achieved, the technical infrastructure would need to meet several key requirements. In particular, it would need to be technically capable of supporting clinical care, research, and improvement; create an easy, non-frustrating way for patients to record data and make direct inputs to their own health records; help clinicians to record and view key clinical measures without irritating them or slowing them down; and enable both sets of data (patient-generated and cliniciangenerated) to be displayed visually for easy use by patients, families, and clinicians as part of routine visits.…”

“…Like you have to have solid technology that is really easy to use and you know, not buggy, and fast, and all those important things. (1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11)(12)(13)(14)(15)(16) Probably the critical components [are] ... aggregating the medical data in a way that is easily digestible, and the patient-reported outcome measures, getting them, getting them in real time, organized in a way that's easily digestible and available to all parties. (1-06 Sponsor/funder) Participants described the need for an interface that was smooth and fast, where end-users could enter data in real time via multiple channels and enjoy flexibility in the types of data that could be entered.…”

“…Fourth, the RCLS-CF explicitly seeks to learn from the achievements and experiences of other programs that share some of the characteristics of the learning system approach. In particular, it builds on the work of Swedish and American programs that seek to facilitate real-time input of data by patients [13] [14,15], joint review of data by clinicians and patients during clinic appointments [16], and co-design of systems by patients, families, clinicians, and researchers [17][18][19].…”