Why publish? An interview study exploring patient innovators' reasons for and experiences of scientific publishing.

BACKGROUND: Scientific publications featuring patient-driven innovations (i.e., innovations that are developed and driven by patients or informal caregivers) are increasing. By understanding patient innovators' experiences of research publication, the scientific community may be better prepared to support or partner with patient innovators. Thus, the aim of this study was to explore patient innovators' reasons for and experiences of authoring scientific publications about their innovations. METHODS: Qualitative semi-structured interviews were conducted with 15 international patient innovators from three continents who had published in scientific journals. Participants were identified through a scoping review on patient-driven innovations and snowball sampling. Interviews were conducted from June to October 2022 and the data was analyzed using the Framework Method. FINDINGS: Participants' reasons for publishing in scientific journals were to strengthen the roles and voices of patients and informal caregivers, and to get recognition for their innovations. Some published as a response to serendipitous opportunities. Several positive experiences were reported: collaborations defined by transparency, mutual respect, and meaningful participation; learning and competence development; and gained confidence regarding the value of lived experiences in research. Participants also reported negative experiences, such as cultural barriers manifested as conservatism in academia and power imbalances between participants and researchers, and structural barriers regarding academic affiliations and research funding. CONCLUSIONS: Despite progress in increasing patient and public involvement in research and publication, our study found that patient innovators still experience barriers. This suggests that continued efforts are needed to facilitate contributions from patient innovators and other public actors to the production of relevant and meaningful research.

Rapid technological advances over the past decades have resulted in many health innovations that enable persons living with chronic conditions to better manage their health conditions in self-care. Similarly, caregivers can provide more advanced informal care. Do-it-yourself health innovations, such as automatic insulin dosing for diabetes patients, have been developed by patients and informal caregivers whom we in this study defined as patient innovators. There is an increasing trend of research focusing on such patient-driven innovations. However, we know little about the driving forces of patient innovators to contribute to scientific publications about their innovations. Therefore, the aim of this study was to explore patient innovators' reasons for publishing and their experiences thereof. We interviewed 15 international patient innovators who had experience of scientific publishing. Their main driving forces were to make patients' voices heard and receive recognition for their innovations, which could facilitate spread to other patients. The patient innovators in our study had positive experiences and meaningful collaborations with researchers that contributed to developing their scientific skills. However, they also faced challenges, such as managing their health and professional occupations besides research, being questioned by peer reviewers, and difficulties tackling the research and publication system without academic affiliation or funding. Our findings suggest that despite strong driving forces and positive experiences of scientific publishing, patient innovators face barriers that need to be addressed to facilitate the publication process for contributors without academic experience.

Decision-making on the fly: a qualitative study of physicians in out-of-hospital emergency medical services.

BACKGROUND: Out-of-hospital Emergency Medical Services (OHEMS) require fast and accurate assessment of patients and efficient clinical judgment in the face of uncertainty and ambiguity. Guidelines and protocols can support staff in these situations, but there is significant variability in their use. Therefore, the aim of this study was to increase our understanding of physician decision-making in OHEMS, in particular, to characterize the types of decisions made and to explore potential facilitating and hindering factors. METHODS: Qualitative interview study of 21 physicians in a large, publicly-owned and operated OHEMS in Croatia. Data was subjected to an inductive content analysis. RESULTS: Physicians (mostly young, female, and early in their career), made three decisions (transport, treat, and if yes on either, how) after an initial patient assessment. Decisions were influenced by patient needs, but to a greater extent by factors related to themselves and patients (microsystem), their organization (mesosystem), and the larger health system (macrosystem). This generated a high variability in quality and outcomes. Participants desired support through further training, improved guidelines, formalized feedback, supportive management, and health system process redesign to better coordinate and align care across organizational boundaries. CONCLUSIONS: The three decisions were made complex by contextual factors that largely lay outside physician control at the mesosystem level. However, physicians still took personal responsibility for concerns more suitably addressed at the organizational level. This negatively impacted care quality and staff well-being. If managers instead adopt a learning orientation, the path from novice to expert physician could be more ably supported through organizational demands and practices aligned with real-world practice. Questions remain on how managers can better support the learning needed to improve quality, safety, and physicians' journey from novice to expert.

Mind the gap: analysis of two pilot projects of a home telehealth service for persons with complex conditions in a Swedish hospital.

BACKGROUND: Developing and implementing home telehealth (HTH) services for patients with chronic conditions is a challenge. HTH services provide continuous and integrated care to patients, but very often pilot projects face non-adoption and abandonment issues. Change processes in healthcare are often complex and require learning to adapt to non-linear and unpredictable events. Complexity science can thus provide a complementary view to the predominant Quality Improvement (QI) approach in healthcare. In this study of two pilot projects in a Swedish hospital, we explore how a theory-driven approach can be used (a) to support the development of a self-monitoring HTH service in hospital care and (b) to evaluate staff and patients' experiences from early adoption. METHODS: To plan and evaluate the service for the recipients (i.e., patients and healthcare providers), we used the Plan-Do-Study-Act (PDSA) tool in combination with two complexity-informed frameworks: the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, and the joint Complexity Assessment Tool (CAT). The theory-informed development process led to two pilot projects of an HTH service for patients with heart failure and COVID-19. We collected data from multiple sources (project documents, a survey on readiness for change among staff, and semi-structured interviews with patients and staff) and analyzed the data using descriptive statistics and qualitative content analysis with a deductive approach. RESULTS: Patients and staff perceived the services as valuable as they enabled rapid feedback, and improved communication and collaboration between patients and healthcare providers. Yet, despite the extensive development efforts, there was a perceived gap between how individuals valued the service and the capacity of adopters, the organization, and the wider system to effectively integrate these services into routine care. CONCLUSIONS: The combined use of PDSA, NASSS, and CAT can support the development and evaluation of HTH services that are perceived as valuable by individual patients and staff. For successful adoption, the value for individuals must be supported by organizational efforts to learn how to integrate new routines and tasks into clinical practice and daily life, and how to coordinate multiple providers within and outside the hospital walls.

Drowning and aquatic injuries dictionary.

BACKGROUND: Drowning is a significant public health issue with more than 320,000 deaths globally every year. These numbers are greatly underestimated, however, due to factors such as inadequate data collection, inconsistent categorization and failure to report in certain regions and cultures.The objective of this study was to develop a standardised drowning dictionary using a consensus-based approach. Through creation of this resource, improved clarity amongst stakeholders will be achieved and, as a result, so will our understanding of the drowning issue. METHODOLOGY: A list of terms and their definitions were created and sent to 16 drowning experts with a broad range of backgrounds across four continents and six languages. A review was conducted using a modified Delphi process over five rounds. A sixth round was done by an external panel evaluating the terms' content validity. RESULTS: The drowning dictionary included more than 350 terms. Of these, less than 10% had been previously published in peer review literature. On average, the external expert validity endorsing the dictionary shows a Scale Content Validity Index (S-CVI/Ave) of 0.91, exceeding the scientific recommended value. Ninety one percent of the items present an I-CVI (Level Content Validity Index) value considered acceptable (>0.78). The endorsement was not a universal agreement (S-CVI/UA: 0.44). CONCLUSION: The drowning dictionary provides a common language, and the authors envisage that its use will facilitate collaboration and comparison across prevention sectors, education, research, policy and treatment. The dictionary will be open to readers for discussion and further review at www.idra.world.