Reporting of asthma mobile health data for clinical practice: a qualitative study of pediatric provider perspectives.

OBJECTIVE: Mobile health (mHealth), defined as the use of mobile phones or applications in healthcare, has been developed to enhance asthma care; yet implementation is inconsistent, and few studies have focused on provider perspectives on use in daily practice. The purpose of this study was to explore primary care pediatric provider perspectives regarding mHealth use in clinical practice for children with asthma. METHODS: A qualitative, descriptive approach was utilized to perform semi-structured interviews on asthma mHealth use with providers caring for children with asthma. Interview transcripts were coded by two independent investigators and any differences were reconciled. Interviews continued until thematic saturation was achieved. RESULTS AND CONCLUSIONS: Seventeen pediatric providers were recruited and interviewed. Three themes identified included implementation benefits, implementation barriers, and reporting desires, with 11 subthemes. Many subthemes were consistent across providers (e.g. self-management benefits and electronic medical record integration), while others such as provider clinical burden and approach to integrating mHealth data reports into daily workflow demonstrated variability. Provider perspectives highlight the potential of mHealth applications in asthma self-management while offering challenges related to clinical burden and suggestions for reporting and workflow integration. These results provide valuable perspectives on mHealth use and reporting to ensure provider efficiency and technology-enhanced asthma care. This study investigates pediatric provider perspectives on asthma mobile health use and reporting in daily practice, a topic that has not sufficiently been explored within the literature. Results can guide best practices, encourage more consistent use, and maximize the benefits of asthma mHealth tools by providers.

Soil legislation and policies: Bibliometric analysis, systematic review and quantitative approaches with an emphasis on the specific cases of the European Union and Portugal.

The literature shows that there are dimensions related to soil legislation and policy in the European Union contexts that can be better explored through bibliometric analysis, systematic reviews and quantitative approaches. Therefore, this research aims to analyse documents on soil legislation and policies, highlighting the specific cases of Portugal and the European Union (EU). The aim is to identify suggestions to improve the Portuguese and European Union soil policy instruments and measures. To achieve these objectives, a bibliometric analysis (considering text and bibliographic data) and systematic review were carried out, as well as a survey of the available soil legislation (considering qualitative data and quantitative analysis). The results show that soil legislation and policy have become more relevant in recent years and that concerns are about soil health, protection and safety, as well as risk mitigation, biodiversity preservation and the maintenance of ecosystem services. However, some topics could be further explored in future research, namely those related to multidisciplinarity, smart methodologies, soil salinisation, innovation and quantitative approaches to assessing policy impacts. This study presents suggestions that can be considered by the Portuguese and European Union policymakers to improve the respective soil legislation and policies. Defining a regulatory system for soils in the European Union has not been easy over time, although there have been attempts, given the specificities of the contexts related to soils and the reluctance of some member states to take certain measures. The approaches and analysis topics considered are innovative (there aren't many scientific documents on the topics that address bibliometric analysis and quantitative assessments with qualitative data) and bring novelty to the literature.

Sexual harassment and sexual assault in the Western Australian mining industry: a qualitative examination of the perceptions of key stakeholders.

Introduction: The prevalence, pervasiveness, and minimization of sexual harassment and sexual assault (SHSA) within the Western Australian mining industry has been revealed in recent Australian reports and inquiries. However, there remains a gap in scholarship focusing on SHSA within the mining sector, specifically that engages with mining employees to understand this issue. Methods: This study aimed to fill this gap by exploring the experiences and perspectives of Western Australian mining employees in relation to SHSA. Through qualitative research methods, stakeholders (n = 30) from various industry roles (e.g., front-line operations, administrative staff) participated in semi-structured interviews. A deductive thematic analysis was conducted to analyze the data. Results: The study revealed diverse perspectives of SHSA among participants, highlighting how this issue is understood, addressed, and discussed within the workplace. While some participants recognized positive shifts in workplace culture, it became apparent that additional efforts are needed to tackle the underlying and persistent factors that contribute to sexism, misogyny, and, ultimately, SHSA. Participants shared their perspectives regarding strategies and initiatives that could effectively combat SHSA within the industry. Discussion: This study constitutes a significant contribution to the limited body of research on SHSA in the Western Australian mining sector, offering valuable insights and recommendations for future prevention initiatives.

Leveraging implementation science theories to develop and expand the use of a penicillin allergy de-labeling intervention.

BACKGROUND: Penicillin allergy is the most frequently reported drug allergy, yet most patients can tolerate the drug if challenged. Despite this discrepancy, large scale penicillin allergy de-labeling interventions have not been widely implemented in many health care systems. The application of a multi-method implementation science approach can provide key tools to study this evidence to practice gap and provide insight to successfully operationalize penicillin allergy evaluation in real-world clinical settings. METHODS: We followed a four-step process that leverages qualitative analysis to design evidence-based, actionable strategies to develop an intervention. First, we specified the clinician-perceived barriers to penicillin allergy de-labeling (intervention targets). We then mapped intervention targets onto Theoretical Domains Framework (domains and constructs) and found the root causes of behavior. Next, we linked root causes of behavior with intervention functions (BCW). In the final step, we synthesized participants' suggestions for process improvement with implementation strategies aligning with the intervention functions. RESULTS: Evidence-based strategies such as focused education and training in penicillin allergy evaluation can address knowledge and confidence barriers reported by frontline clinicians. Other key strategies involve developing a system of champions, improving communications systems, and restructuring the healthcare team. Implementation mapping can provide a powerful multi-method framework to study, design, and customize intervention strategies. CONCLUSION: Empowering clinicians beyond allergy specialists to conduct penicillin allergy assessments requires designing new workflows and systems and providing additional knowledge to those clinicians.

A Simple and Systematic Approach to Qualitative Data Extraction From Social Media for Novice Health Care Researchers: Tutorial.

Social media analyses have become increasingly popular among health care researchers. Social media continues to grow its user base and, when analyzed, offers unique insight into health problems. The process of obtaining data for social media analyses varies greatly and involves ethical considerations. Data extraction is often facilitated by software tools, some of which are open source, while others are costly and therefore not accessible to all researchers. The use of software for data extraction is accompanied by additional challenges related to the uniqueness of social media data. Thus, this paper serves as a tutorial for a simple method of extracting social media data that is accessible to novice health care researchers and public health professionals who are interested in pursuing social media research. The discussed methods were used to extract data from Facebook for a study of maternal perspectives on sudden unexpected infant death.

Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository.

Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it clear that qualitative studies are not exempt from this data sharing requirement. Recognizing this trend, the Palliative Care Research Cooperative Group (PCRC) realized the value of creating a de-identified qualitative data repository to complement its existing de-identified quantitative data repository. The PCRC Data Informatics and Statistics Core leadership partnered with the Qualitative Data Repository (QDR) to establish the first serious illness and palliative care qualitative data repository in the U.S. We describe the processes used to develop this repository, called the PCRC-QDR, as well as our outreach and education among the palliative care researcher community, which led to the first ten projects to share the data in the new repository. Specifically, we discuss how we co-designed the PCRC-QDR and created tailored guidelines for depositing and sharing qualitative data depending on the original research context, establishing uniform expectations for key components of relevant documentation, and the use of suitable access controls for sensitive data. We also describe how PCRC was able to leverage its existing community to recruit and guide early depositors and outline lessons learned in evaluating the experience. This work advances the establishment of best practices in qualitative data sharing.

Psychiatrists' perceptions of conditions and consequences associated with the implementation of open notes: qualitative investigation.

OBJECTIVE: In a growing list of countries, patients are granted access to their clinical notes ("open notes") as part of their online record access. Especially in the field of mental health, open notes remain controversial with some clinicians perceiving open notes as a tool for improving therapeutic outcomes by increasing patient involvement, while others fear that patients might experience psychological distress and perceived stigmatization, particularly when reading clinicians' notes. More research is needed to optimize the benefits and mitigate the risks. METHODS: Using a qualitative research design, we conducted semi-structured interviews with psychiatrists practicing in Germany, to explore what conditions they believe need to be in place to ensure successful implementation of open notes in psychiatric practice as well as expected subsequent changes to their workload and treatment outcomes. Data were analyzed using thematic analysis. RESULTS: We interviewed 18 psychiatrists; interviewees believed four key conditions needed to be in place prior to implementation of open notes including careful consideration of (1) diagnoses and symptom severity, (2) the availability of additional time for writing clinical notes and discussing them with patients, (3) available resources and system compatibility, and (4) legal and data protection aspects. As a result of introducing open notes, interviewees expected changes in documentation, treatment processes, and doctor-physician interaction. While open notes were expected to improve transparency and trust, participants anticipated negative unintended consequences including the risk of deteriorating therapeutic relationships due to note access-related misunderstandings and conflicts. CONCLUSION: Psychiatrists practiced in Germany where open notes have not yet been established as part of the healthcare data infrastructure. Interviewees were supportive of open notes but had some reservations. They found open notes to be generally beneficial but anticipated effects to vary depending on patient characteristics. Clear guidelines for managing access, time constraints, usability, and privacy are crucial. Open notes were perceived to increase transparency and patient involvement but were also believed to raise issues of stigmatization and conflicts.

Harnessing ChatGPT for Thematic Analysis: Are We Ready?

ChatGPT (OpenAI) is an advanced natural language processing tool with growing applications across various disciplines in medical research. Thematic analysis, a qualitative research method to identify and interpret patterns in data, is one application that stands to benefit from this technology. This viewpoint explores the use of ChatGPT in three core phases of thematic analysis within a medical context: (1) direct coding of transcripts, (2) generating themes from a predefined list of codes, and (3) preprocessing quotes for manuscript inclusion. Additionally, we explore the potential of ChatGPT to generate interview transcripts, which may be used for training purposes. We assess the strengths and limitations of using ChatGPT in these roles, highlighting areas where human intervention remains necessary. Overall, we argue that ChatGPT can function as a valuable tool during analysis, enhancing the efficiency of the thematic analysis and offering additional insights into the qualitative data. While ChatGPT may not adequately capture the full context of each participant, it can serve as an additional member of the analysis team, contributing to researcher triangulation through knowledge building and sensemaking.

Development, validation and feasibility of a Patient Satisfaction Questionnaire for evaluating the quality performance of a diagnostic small fibre neuropathy service: A qualitative study.

INTRODUCTION AND AIM: Small fibre neuropathy (SFN) is a peripheral neuropathy, leading to neuropathic pain and autonomic dysfunction. An evidence-based standardized patient diagnostic SFN service has been implemented in the Netherlands for improving patient-centred SFN care. However, the quality of care of this diagnostic SFN service has never been assessed from a patient perspective. The aim of this study was to develop and validate an SFN-Patient Satisfaction Questionnaire (SFN-PSQ) to measure the quality performance of a standardized diagnostic SFN service. METHODS: A descriptive qualitative study to create the SFN-PSQ was performed using the (COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist. For item generation and content development, domains and/or items from validated PSQs were selected. The content development and content validity were performed using a Delphi method with SFN expert caregivers with different backgrounds. By using the three-step-test method in individual cognitive interviews, the content validity by patients was finalized. RESULTS: In one online Delphi panel round, the content of the first concept of the SFN-PSQ was validated, which resulted in the second concept of the SFN-PSQ. From July 2019 till March 2020, nine patients consented to participate in the individual cognitive interviews. The most significant changes of the new questionnaire were adding domains and items concerning the waiting list, the diagnostic services and consultation by the hospital psychiatrist. Also, a differentiation was made for both an inpatient and outpatient diagnostic SFN service. Furthermore, the clarity and intelligibility of the domains/items were improved, resulting in an increased comprehension of the SFN-PSQ. Ultimately, the new developed SFN-PSQ consisted of 10 domains and 51 items, suitable for measuring patient satisfaction of the neurological analysis in patients with SFN. CONCLUSION: Through item generation, expert opinions and interviews with patients, the SFN-PSQ was developed and validated, and feasibility was confirmed. The structure of the questionnaire, based on the logistic and diagnostic SFN pathway, could be used as a model in other hospitals to improve the quality, continuity and access of SFN care and other chronic diseases taking into account potential cross-cultural differences. PATIENT OR PUBLIC CONTRIBUTION: Caregivers were involved in the item generation and content development of the questionnaire. Patients were directly involved in testing the content validity and feasibility of the SFN-PSQ. CLINICAL TRIAL REGISTRATION: Not applicable.

Patterns of common illness and injury of readymade garment workers and a review of safety practices in Bangladesh.

BACKGROUND: Readymade garment workers globally experience distinctive vulnerabilities at the workplace. The situation is worse in many developing countries. However, there is a lack of scientific evidence about the health and safety of garment workers in the workplace. OBJECTIVE: The objective of this study was to examine the patterns of illness and injury of garment workers, factory level health safety policies and programs, and views and perception of management staff at factories in Bangladesh. METHODS: This mixed-method study was conducted among garment workers and management level staff between January 2018 and April 2019. We extracted 4000 health records of the workers who attended primary health care centers of the factories and conducted 11 key informant interviews using qualitative method from different management-level staff. RESULTS: Half of the workers (51.0%) were working in the sewing section following 12.8% in quality control and 12.3% in the laundry section. A review of the medical records showed that peptic ulcer diseases (PUDs) (19.2%), fever (11.7%), loose motion (10.3%), and headache (9.4%). Needle injury was uncommon for taking medical care. Occupational safety and health management, safe drinking water, access to maternity leave and other facilities were better in large and medium factories compared with those in small factories. CONCLUSIONS: Although the readymade garments sector is one of the largest sources of foreign currency revenue earnings in Bangladesh, occupational health and safety issues of workers remain a big concern. Thus, support from the government needs more focus on the health and safety of workers.

Natural Language Processing of Referral Letters for Machine Learning-Based Triaging of Patients With Low Back Pain to the Most Appropriate Intervention: Retrospective Study.

BACKGROUND: Decision support systems (DSSs) for suggesting optimal treatments for individual patients with low back pain (LBP) are currently insufficiently accurate for clinical application. Most of the input provided to train these systems is based on patient-reported outcome measures. However, with the appearance of electronic health records (EHRs), additional qualitative data on reasons for referrals and patients' goals become available for DSSs. Currently, no decision support tools cover a wide range of biopsychosocial factors, including referral letter information to help clinicians triage patients to the optimal LBP treatment. OBJECTIVE: The objective of this study was to investigate the added value of including qualitative data from EHRs and referral letters to the accuracy of a quantitative DSS for patients with LBP. METHODS: A retrospective study was conducted in a clinical cohort of Dutch patients with LBP. Patients filled out a baseline questionnaire about demographics, pain, disability, work status, quality of life, medication, psychosocial functioning, comorbidity, history, and duration of pain. Referral reasons and patient requests for help (patient goals) were extracted via natural language processing (NLP) and enriched in the data set. For decision support, these data were considered independent factors for triage to neurosurgery, anesthesiology, rehabilitation, or minimal intervention. Support vector machine, k-nearest neighbor, and multilayer perceptron models were trained for 2 conditions: with and without consideration of the referral letter content. The models' accuracies were evaluated via F1-scores, and confusion matrices were used to predict the treatment path (out of 4 paths) with and without additional referral parameters. RESULTS: Data from 1608 patients were evaluated. The evaluation indicated that 2 referral reasons from the referral letters (for anesthesiology and rehabilitation intervention) increased the F1-score accuracy by up to 19.5% for triaging. The confusion matrices confirmed the results. CONCLUSIONS: This study indicates that data enriching by adding NLP-based extraction of the content of referral letters increases the model accuracy of DSSs in suggesting optimal treatments for individual patients with LBP. Overall model accuracies were considered low and insufficient for clinical application.

Utilising qualitative data for social network analysis in disaster research: opportunities, challenges, and an illustration.

An abundance of unstructured and loosely structured data on disasters exists and can be analysed using network methods. This paper overviews the use of qualitative data in quantitative social network analysis in disaster research. It discusses two types of networks, each with a relevant major topic in disaster research-that is, (i) whole network approaches to emergency management networks and (ii) personal network approaches to the social support of survivors-and four usable forms of qualitative data. This paper explains five opportunities afforded by these approaches, revolving around their flexibility and ability to account for complex network structures. Next, it presents an empirical illustration that extends the authors' previous work examining the sources and the types of support and barrier experienced by households during long-term recovery from Hurricane (Superstorm) Sandy (2012), wherein quantitative social network analysis was applied to two qualitative datasets. The paper discusses three challenges associated with these approaches, related to the samples, coding, and bias.

The over-citation of Daubert in forensic anthropology.

The 1993 US Supreme Court decision Daubert v. Merrell Dow Pharmaceuticals, Inc. presented new guidance for the judicial assessment of expert witness evidence and testimony in the determination of admissibility. Despite the rarity of admissibility challenges to forensic anthropology evidence, Daubert is frequently cited in published forensic anthropology research. This study undertook a qualitative thematic analysis of forensic anthropology articles published in the Journal of Forensic Sciences to assess why authors continue to cite Daubert and express concerns over potential exclusion. The results show a significant increase in the number of articles that cite legal admissibility standards over time (p < 0.001). Authors frequently cite these standards to contextualize their results within the Daubert framework or to justify the need for their research. Notably, many articles present Daubert as a constraining force, misinterpreting the guidelines as rigid criteria or that they require methods to be strictly quantitative. However, Daubert was intended to be a flexible tool for judges-not a standard or instruction for scientists. While it was reasonable to reflect on the scientific rigor of methods in the wake of the Daubert decision, a new perspective is warranted in which forensic anthropologists shift their focus from trying to "satisfy" admissibility guidelines to adopting quality assurance measures that minimize error and ensure confidence in analytical results, and developing and using methods that are grounded in good science-which is important regardless of whether or not the results are ever the subject of a trial.

Creating a difference - a role for the arts in addressing child wellbeing in conflict-affected areas.

BACKGROUND: Details findings from a project on the potential for arts activities and art therapy to support the mental health and wellbeing of children living in Kashmir. METHODS: The intervention engaged 30 school children over the course of one year who produced various forms of artwork and performances. In this paper, we report on project impacts, drawing on some of our qualitative measures including observations and interviews. RESULTS: Our research details impacts and improvements in areas of emotional expression, belonging, and agency. We also found an important role for schools to create safe, secure, and caring spaces to allow students to express themselves and work through traumatic feelings in a non-judgemental way. CONCLUSIONS: School-based arts interventions can play an important role in the mental health and wellbeing of children. Critical here, however, are dedicated space, time, and resources to provide a supportive environment and to sustain activity in long-term.

Sexual decision making of Ugandan young adults: findings from national online discussions.

Fifty-one 18-22-year-old Ugandans took part in asynchronous online discussions about sexual decision-making. To increase generalizability and variability of experience, youth were recruited across the country using social media advertising. Participants were stratified into 8 groups by sex and sexual experience (e.g., women who had not had sex). Participants were asked questions such as, "What role do you think [men/women] play in deciding when a couple is going to play sex?" Several themes emerged. Both young men and women articulated social pressures to be abstinent, particularly to avoid STIs and pregnancy moreso than saving oneself for marriage. That said, women noted pressures to be seen as "pure". There also were pressures to have sex: Men were expected to have sex to demonstrate their virility. Women were expected to have sex if they accepted gifts or other commodities from their partners. It seemed that the specter of HIV and other STIs, as well as unwanted pregnancy, served to mitigate these expectations however, resulting in self-efficacy to use condoms among both men and women. Nonetheless, both men and women acknowledged that it could be hard for women to negotiate condoms. Implications for HIV prevention are discussed.

Exploration of the effects of incarceration on the health of Latina women and their children using the life course theory.

OBJECTIVE: Use the Life Course Theory (LCT) to explore the effects of involvement with the justice system on the health of Latina women and their children. DESIGN: A supplementary analysis was conducted using data collected from the original study to answer a new research question. SETTING: South Central Texas. PARTICIPANTS: A primary qualitative data set from 12 Latina women involved with the justice system. METHODS: We applied LCT principles and used thematic content analysis as such we employed categoric distinction: lifespan development, time and place in individuals' lives, the timing of lives, human agency, and linked lives to analyze participants' narratives. RESULTS: Five themes emerged that aligned with LCT principles: (1) It feels like I'm living in my own prison; (2) What do I have to live for now; (3) It is like double punishment; (4) They made my choices; and (5) People didn't really understand. Participants felt helpless with few options to overcome their prior adversities, which affected their ability to make positive future choices. CONCLUSIONS: Findings highlight the potential, long-term, negative health consequences that may result from incarceration. Considering that justice system involvement can lead to more profound maternal and child health disparities, our findings suggest that greater advocacy from the nursing profession would increase accessibility to equitable and respectful maternity and women's health care services. Key points Involvement with the justice system can result in negative health consequences for women and their children. Maternal and child health disparities are often more profound after involvement with the justice system. Greater advocacy is needed from the nursing profession to ensure access to equitable and respectful maternity and women's health care services.

Improvements in Patient-Reported Outcomes in Relapsed or Refractory Large B-Cell Lymphoma Patients Treated With Epcoritamab.

BACKGROUND: Patient-reported outcomes were evaluated in EPCORE NHL-1 in patients with relapsed or refractory (R/R) large B-cell lymphoma (LBCL) treated with epcoritamab monotherapy (NCT03625037). MATERIALS AND METHODS: Adults with R/R CD20+ LBCL and ≥2 prior systemic antilymphoma therapies, including anti-CD20, completed the Functional Assessment of Cancer Therapy-Lymphoma (FACT-Lym) and EQ-5D-3L. A subgroup of patients provided additional feedback in one-on-one qualitative interviews. FACT-Lym and EQ-5D-3L score changes from baseline (CFB) to cycle 9 or end of treatment were interpreted using published minimally important differences (MID). RESULTS: In total, 157 patients (88.5% with diffuse LBCL) were treated (median age, 64 years). In total, 70.7% had ≥3 prior treatments, 61.1% had primary refractory disease, and 82.8% were refractory to last systemic therapy. FACT-Lym scores exceeded MID thresholds: mean (SD) CFB were 4.4 (15.2), MID 3.0 to 7.0 (FACT-General); 5.9 (7.6), MID 2.9 to 5.4 (FACT-Lymphoma subscale); 8.4 (15.2), MID 5.5 to 11.0 (FACT-Trial Outcome Index); 10.3 (20.2), MID 6.5 to 11.2 (FACT-Lym total score). EQ-5D-3L index scores, 0.09 (0.20), MID 0.08, and EQ-VAS scores, 16.6 (22.8), MID 7.0, improved. In 20 qualitative interviews, 88.2% reported symptom improvements; 80.0% were "very satisfied" or "satisfied" with epcoritamab. CONCLUSIONS: R/R LBCL patients reported consistent, clinically meaningful improvements in symptoms and HRQoL and satisfaction with epcoritamab.

User feedback on the NHS test & Trace Service during COVID-19: The use of machine learning to analyse free-text data from 37,914 England adults.

Objectives: The UK government's approach to the pandemic relies on a test, trace and isolate strategy, mainly implemented via the digital NHS Test & Trace Service. Feedback on user experience is central to the successful development of public-facing Services. As the situation dynamically changes and data accumulate, interpretation of feedback by humans becomes time-consuming and unreliable. The specific objectives were to 1) evaluate a human-in-the-loop machine learning technique based on structural topic modelling in terms of its Service ability in the analysis of vast volumes of free-text data, 2) generate actionable themes that can be used to increase user satisfaction of the Service. Methods: We evaluated an unsupervised Topic Modelling approach, testing models with 5-40 topics and differing covariates. Two human coders conducted thematic analysis to interpret the topics. We identified a Structural Topic Model with 25 topics and metadata as covariates as the most appropriate for acquiring insights. Results: Results from analysis of feedback by 37,914 users from May 2020 to March 2021 highlighted issues with the Service falling within three major themes: multiple contacts and incompatible contact method and incompatible contact method, confusion around isolation dates and tracing delays, complex and rigid system. Conclusions: Structural Topic Modelling coupled with thematic analysis was found to be an effective technique to rapidly acquire user insights. Topic modelling can be a quick and cost-effective method to provide high quality, actionable insights from free-text feedback to optimize public health Services.

Incorporating Community Partner Perspectives on eHealth Technology Data Sharing Practices for the California Early Psychosis Intervention Network: Qualitative Focus Group Study With a User-Centered Design Approach.

BACKGROUND: Increased use of eHealth technology and user data to drive early identification and intervention algorithms in early psychosis (EP) necessitates the implementation of ethical data use practices to increase user acceptability and trust. OBJECTIVE: First, the study explored EP community partner perspectives on data sharing best practices, including beliefs, attitudes, and preferences for ethical data sharing and how best to present end-user license agreements (EULAs). Second, we present a test case of adopting a user-centered design approach to develop a EULA protocol consistent with community partner perspectives and priorities. METHODS: We conducted an exploratory, qualitative, and focus group-based study exploring mental health data sharing and privacy preferences among individuals involved in delivering or receiving EP care within the California Early Psychosis Intervention Network. Key themes were identified through a content analysis of focus group transcripts. Additionally, we conducted workshops using a user-centered design approach to develop a EULA that addresses participant priorities. RESULTS: In total, 24 participants took part in the study (14 EP providers, 6 clients, and 4 family members). Participants reported being receptive to data sharing despite being acutely aware of widespread third-party sharing across digital domains, the risk of breaches, and motives hidden in the legal language of EULAs. Consequently, they reported feeling a loss of control and a lack of protection over their data. Participants indicated these concerns could be mitigated through user-level control for data sharing with third parties and an understandable, transparent EULA, including multiple presentation modalities, text at no more than an eighth-grade reading level, and a clear definition of key terms. These findings were successfully integrated into the development of a EULA and data opt-in process that resulted in 88.1% (421/478) of clients who reviewed the video agreeing to share data. CONCLUSIONS: Many of the factors considered pertinent to informing data sharing practices in a mental health setting are consistent among clients, family members, and providers delivering or receiving EP care. These community partners' priorities can be successfully incorporated into developing EULA practices that can lead to high voluntary data sharing rates.

A grounded theory-based qualitative approach for examining local implementation of public health policies during crises.

Background: COVID-19's emergence questions the agility of health policy deployment in a context of urgency. This exceptional pandemic offers a unique Implementation Science study opportunity. It reveals how actors adapt, coordinate, and mitigate an unknown global threat to safeguard populations from an initially mysterious virus. Limited research has explored how involved players act and adapt their practices to fulfil health protection missions during a global health crisis. Bridging the gap between public policy expectations and achievements requires a methodology for stakeholder identification and implementation practice description. Objective: Focusing on COVID-19 management in France's second-largest region, we investigate ministerial recommendation implementation and the emergence of new links, coordination modes, and practices. Methods: Due to the novel subject, we adopted grounded theory. Initial documentary data collection identifies stakeholders for subsequent interviews. Open-ended coding of collected discourse enables content analysis. Results: Findings reveal a crisis-driven re-evaluation of stakeholder relationships. This research identifies three levels of implementation of health policies at the local level (administrative, organizational and operational) and reveals different types of coordination specific to each of these levels. Our results provide insights on how to better coordinate and implement healthcare policies in a period of crisis. Recommendations include real-life simulations of large-scale crises. Conclusion: Our work establishes a methodological foundation for analysing coordination dynamics. Future research could compare these findings with other unpredictable health emergencies, such as episiotomic veterinary health crises.•The first step of the method is to analyse the guidelines of health policy implementation during the Covid-19 crisis and to identify the main stakeholders in charge of the local health policy implementation.•The second step consists of interviewing these stakeholders using a co-constructed sample and structural coding of their speech to reveal the forms of coordination between stakeholders.