A Patient-Driven Mobile Health Innovation in Cystic Fibrosis Care: Comparative Cross-Case Study.

BACKGROUND: Patient-driven innovation in health care is an emerging phenomenon with benefits for patients with chronic conditions, such as cystic fibrosis (CF). However, previous research has not examined what may facilitate or hinder the implementation of such innovations from the provider perspective. OBJECTIVE: The aim of this study was to explain variations in the adoption of a patient-driven innovation among CF clinics. METHODS: A comparative multiple-case study was conducted on the adoption of a patient-controlled app to support self-management and collaboration with health care professionals (HCPs). Data collection and analysis were guided by the nonadoption, abandonment, spread, scale-up, and sustainability and complexity assessment tool (NASSS-CAT) framework. Data included user activity levels of patients and qualitative interviews with staff at 9 clinics (n=8, 88.9%, in Sweden; n=1, 11.1%, in the United States). We calculated the maximum and mean percentage of active users at each clinic and performed statistical process control (SPC) analysis to explore how the user activity level changed over time. Qualitative data were subjected to content analysis and complexity analysis and used to generate process maps. All data were then triangulated in a cross-case analysis. RESULTS: We found no evidence of nonadoption or clear abandonment of the app. Distinct patterns of innovation adoption were discernable based on the maximum end-user activity for each clinic, which we labeled as low (16%-23%), middle (25%-47%), or high (58%-95%) adoption. SPC charts illustrated that the introduction of new app features and research-related activity had a positive influence on user activity levels. Variation in adoption was associated with providers' perceptions of care process complexity. A higher perceived complexity of the value proposition, adopter system, and organization was associated with lower adoption. In clinics that adopted the innovation early or those that relied on champions, user activity tended to plateau or decline, suggesting a negative impact on sustainability. CONCLUSIONS: For patient-driven innovations to be adopted and sustained in health care, understanding patient-provider interdependency and providers' perspectives on what generates value is essential.

Patients' experiences of Daily Talks: a patient-driven intervention in inpatient mental healthcare.

BACKGROUND: Recovery is known to be enhanced by meaningful interactions between patients and mental health staff. However, nurses may become distanced from patients, and patients may spend most of their time in inpatient mental health care alone. AIMS: This study aimed to explore how patients experience the intervention Daily Talks, a patient-driven innovation intended to enhance meaningful interactions between patients and staff. METHODS: Fourteen in-depth interviews were performed with patients who participated in Daily Talks. The interviews were analysed using reflexive thematic analysis. RESULTS: The results of the participants' experiences of Daily Talks are presented in four themes: 1.Interpersonal and active interaction where individual factors matter 2.A patient-controlled space 3.A multi-use intervention and 4.A part of the daily healthcare structure. Participants stated that Daily Talks improved the relationship between patients and their nursing staff, and they stressed the importance of patients having control over both time and content in the Daily Talks. Daily Talks was used to vent emotions and thoughts, handle situations and create strategies, and become part of a helpful structure. CONCLUSIONS: The results support the value of Daily Talks, indicating that Daily Talks may facilitate helpful structures and meaningful relationships between patients and nursing staff.

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review.

OBJECTIVES: The aim of this study was to gain a deeper understanding of the objectives and outcomes of patient-driven innovations that have been published in the scientific literature, focusing on (A) the unmet needs that patient-driven innovations address and (B) the outcomes for patients and healthcare that have been reported. METHODS: We performed an inductive qualitative content analysis of scientific publications that were included in a scoping review of patient-driven innovations, previously published by our research group. The review was limited to English language publications in peer-reviewed journals, published in the years 2008-2020. RESULTS: In total, 83 publications covering 21 patient-driven innovations were included in the analysis. Most of the innovations were developed for use on an individual or community level without healthcare involvement. We created three categories of unmet needs that were addressed by these innovations: access to self-care support tools, open sharing of information and knowledge, and patient agency in self-care and healthcare decisions. Eighteen (22%) publications reported outcomes of patient-driven innovations. We created two categories of outcomes: impact on self-care, and impact on peer interaction and healthcare collaboration. CONCLUSIONS: The patient-driven innovations illustrated a diversity of innovative approaches to facilitate patients' and informal caregivers' daily lives, interactions with peers and collaborations with healthcare. As our findings indicate, patients and informal caregivers are central stakeholders in driving healthcare development and research forward to meet the needs that matter to patients and informal caregivers. However, only few studies reported on outcomes of patient-driven innovations. To support wider implementation, more evaluation studies are needed, as well as research into regulatory approval processes, dissemination and governance of patient-driven innovations.