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

Abstract

Background: New opportunities to record, collate, and analyze routine patient data have prompted optimism about the potential of learning health systems. However, real-life examples of such systems remain rare and few have been exposed to study. We aimed to examine the views of design stakeholders on designing and implementing a US-based registry-enabled care and learning system for cystic fibrosis (RCLS-CF). Methods: We conducted a two-phase qualitative study with stakeholders involved in designing, implementing, and using the RCLS-CF. First, we conducted semi-structured interviews with 19 program personnels involved in design and delivery of the program. We then undertook 11 follow-up interviews. Analysis of interviews was based on the constant comparative method, supported by NVivo software. Results: The organizing principle for the RCLS-CF was a shift to more partnership-based relationships between patients and clinicians, founded in values of co-production, and facilitated by technology-enabled data sharing. Participants proposed that, for the system to be successful, the data it collects must be both clinically useful and meaningful to patients and clinicians. They suggested that the prerequisites included a technological infrastructure capable of supporting data entry and joint decision-making in an accessible way, and a set of social conditions, including willingness from patients and clinicians alike to work together in new ways that build on the expertise of both parties. Follow-up interviews highlighted some of the obstacles, including technical challenges and practical constraints on refiguring relationships between clinicians and patients. Conclusions: The values and vision underlying the RCLS-CF were shared and clearly and consistently articulated by design stakeholders. The challenges to realization were often not at the level of principle, but were both practical and social in character. Lessons from this study may be useful to other systems looking to harness the power of "big data" registries, including patient-reported data, for care, research, and quality improvement.

Using qualitative and participatory methods to refine implementation strategies: universal family psychosocial screening in pediatric cancer

“…Stakeholders were selected using purposive criterion-based sampling to represent different levels of the social ecology of children’s cancer including parent advocates, multidisciplinary health care providers, members/leaders of key pediatric psycho-oncology professional organizations, and leaders in the pediatric healthcare policy [ 20 , 21 ]. Parental stakeholders were considered who had children with cancer.…”

“…The key features and contributions of qualitative approaches to engage stakeholders in participatory methods for designing and refining implementation strategies (i.e., gathering process data and explanatory outcome data from which practical ideas can be inductively derived from diverse groups of stakeholders) are well documented [ 18 , 19 ]. Typically, an implementation science framework is used to facilitate data collection from stakeholders and analyze and interpret their data to identify themes and create or modify implementation strategies [ 10 , 20 , 21 ]. Few research reports detail how stakeholder results informed and transformed initial iterations of implementation strategies, particularly in a long-standing program of research focused on health equity.…”

A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings

“…Addressing the priorities and concerns of both parties will facilitate realistic and attainable goals in the context of coproduction facilitated by technology-enabled data sharing [ 5 ]. For successful mHealth interventions, patient-generated health data must be both meaningful to patients and useful to clinicians [ 22 ].…”

“…Studies have reported associations between the use of patient-generated health data and improved symptom control and quality of life [10][11][12][13][14], patient-clinician communication and satisfaction [15,16], reduced health care utilization, and increased survival [17][18][19][20]. Such an approach is not yet used in CF clinical practice, despite a strongly stated need by the CF patient community [21][22][23]. A previous assessment of preferences for remote collection and sharing of patient-generated health data among patients with CF or their caregivers reported that the majority are willing to share such data [24].…”

Evaluating stakeholder involvement in building a decision support tool for NHS health checks: co-producing the WorkHORSE study

“…We believe this to be an innovative project in the field of developing a decision support tool using the principles of co-production and evaluating the experiences and reflections of those involved in the process. Studies have reported upon co-production as a method of increasing user involvement, primarily in the form of exploratory studies [24,25] or case study [26][27][28][29][30][31] reviews. However, there is a dearth of literature relating to the combined experience of a team of modelling researchers and stakeholders on iteratively co-producing a simulation decision support tool.…”