Does an interactive trust-enhanced electronic consent improve patient experiences when asked to share their health records for research? A randomized trial

Objective In the context of patient broad consent for future research uses of their identifiable health record data, we compare the effectiveness of interactive trust-enhanced e-consent, interactive-only e-consent, and standard e-consent (no interactivity, no trust enhancement). Materials and Methods A randomized trial was conducted involving adult participants making a scheduled primary care visit. Participants were randomized into 1 of the 3 e-consent conditions. Primary outcomes were patient-reported satisfaction with and subjective understanding of the e-consent. Secondary outcomes were objective knowledge, perceived voluntariness, trust in medical researchers, consent decision, and time spent using the application. Outcomes were assessed immediately after use of the e-consent and at 1-week follow-up. Results Across all conditions, participants (N = 734) reported moderate-to-high satisfaction with consent (mean 4.3 of 5) and subjective understanding (79.1 of 100). Over 94% agreed to share their health record data. No statistically significant differences in outcomes were observed between conditions. Irrespective of condition, black participants and those with lower education reported lower satisfaction, subjective understanding, knowledge, perceived voluntariness, and trust in medical researchers, as well as spent more time consenting. Conclusions A large majority of patients were willing to share their identifiable health records for research, and they reported positive consent experiences. However, incorporating optional additional information and messages designed to enhance trust in the research process did not improve consent experiences. To improve poorer consent experiences of racial and ethnic minority participants and those with lower education, other novel consent technologies and processes may be valuable

Impact of Personalized Interactive Storytelling on Suspension of Disbelief in Clinical Simulation

The literature review found suspension of disbelief (SOD) in clinical simulation heavily weighted on educators alone within high-fidelity environments. The project examined a co-created narrative background story applied to a simulated patient’s clinical profile to determine achieving an improved connectedness toward the simulated patient leading to enhanced SOD and enhanced levels of learning and reaction. The studied population was third-semester associate degree nursing students over 18 years of age with prior clinical simulation experience who were not repeating the semester. The research methodology used a quantitative experimental design with cluster sampling, randomization, and post-Likert-scored questionnaires. The intervention group co-created personalized storytelling narratives for the simulated patient’s clinical profile. After the clinical simulation activity, both intervention and control groups completed questionnaires examining their ability to achieve SOD during the activity and their levels and reaction and learning. Results using two-tailed t tests indicated the intervention revealed an enhanced level of presence during the participation. The improved presence revealed a positive, engaging experience applicable to future nursing roles and enhanced knowledge, skills, and confidence. Conclusions were drawn that applying co-created storytelling to a simulated patient’s clinical profile improves presence, suggesting an enhanced ability to achieve SOD during the activity. Recommendations for future research projects include studying storytelling in clinical simulation with a larger sample size and having participants create an entire clinical profile, analyzing the influence of emotional position toward simulation on SOD, and maintaining usage of intervention once learned

Protocol for a non-randomised feasibility study testing a primary care intervention to promote engagement in an online health community for adults with troublesome asthma

Introduction: In the UK, approximately 4.3 million adults have asthma, with one-third experiencing poor asthma control, affecting their quality of life, and increasing their healthcare use. Interventions promoting emotional/behavioural self-management can improve asthma control and reduce comorbidities and mortality. Integration of online peer support into primary care services to foster self-management is a novel strategy. We aim to co-design and evaluate an intervention for primary care clinicians to promote engagement with an asthma online health community (OHC). Our protocol describes a ‘survey leading to a trial’ design as part of a mixed-methods, non-randomised feasibility study to test the feasibility and acceptability of the intervention. Methods and analysis: Adults on the asthma registers of six London general practices (~3000 patients) will be invited to an online survey, via text messages. The survey will collect data on attitudes towards seeking online peer support, asthma control, anxiety, depression, quality of life, information on the network of people providing support with asthma and demographics. Regression analyses of the survey data will identify correlates/predictors of attitudes/receptiveness towards online peer support. Patients with troublesome asthma, who (in the survey) expressed interest in online peer support, will be invited to receive the intervention, aiming to reach a recruitment target of 50 patients. Intervention will involve a one-off, face-to-face consultation with a practice clinician to introduce online peer support, sign patients up to an established asthma OHC, and encourage OHC engagement. Outcome measures will be collected at baseline and 3 months post intervention and analysed with primary care and OHC engagement data. Recruitment, intervention uptake, retention, collection of outcomes, and OHC engagement will be assessed. Interviews with clinicians and patients will explore experiences of the intervention. Ethics and dissemination: Ethical approval was obtained from a National Health Service Research Ethics Committee (reference: 22/NE/0182). Written consent will be obtained before intervention receipt and interview participation. Findings will be shared via dissemination to general practices, conference presentations and peer-reviewed publications. Trial registration number: NCT05829265

Non-randomised feasibility study testing a primary care intervention to promote engagement in an online health community for adults with troublesome asthma: protocol

Introduction: In the UK, approximately 4.3 million adults have asthma, with one-third experiencing poor asthma control, affecting their quality of life, and increasing their healthcare use. Interventions promoting emotional/behavioural self-management can improve asthma control and reduce comorbidities and mortality. Integration of online peer support into primary care services to foster self-management is a novel strategy. We aim to co-design and evaluate an intervention for primary care clinicians to promote engagement with an asthma online health community (OHC). Our protocol describes a ‘survey leading to a trial’ design as part of a mixed-methods, non-randomised feasibility study to test the feasibility and acceptability of the intervention. Methods and analysis: Adults on the asthma registers of six London general practices (~3000 patients) will be invited to an online survey, via text messages. The survey will collect data on attitudes towards seeking online peer support, asthma control, anxiety, depression, quality of life, information on the network of people providing support with asthma and demographics. Regression analyses of the survey data will identify correlates/predictors of attitudes/receptiveness towards online peer support. Patients with troublesome asthma, who (in the survey) expressed interest in online peer support, will be invited to receive the intervention, aiming to reach a recruitment target of 50 patients. Intervention will involve a one-off, face-to-face consultation with a practice clinician to introduce online peer support, sign patients up to an established asthma OHC, and encourage OHC engagement. Outcome measures will be collected at baseline and 3 months post intervention and analysed with primary care and OHC engagement data. Recruitment, intervention uptake, retention, collection of outcomes, and OHC engagement will be assessed. Interviews with clinicians and patients will explore experiences of the intervention. Ethics and dissemination: Ethical approval was obtained from a National Health Service Research Ethics Committee (reference: 22/NE/0182). Written consent will be obtained before intervention receipt and interview participation. Findings will be shared via dissemination to general practices, conference presentations and peer-reviewed publications. Trial registration number: NCT05829265

Use Of Teach-Back During Informed Consent In Cancer Clinical Trials

Five percent of the 1.8 million patients diagnosed with cancer in the United States (US) enroll annually in a clinical trial (American Cancer Society, 2021; Institute of Medicine Committee on Cancer Clinical Trials; National Cancer Institute Cooperative Group Program, 2010). Flawed research consent practices are detrimental to patient safety and costly to the US Healthcare system (Eisenberg et al., 2012; Unger et al., 2019). Well-trained nurses are imperative to conducting rigorous, reproducible, and quality research (Brandt et al., 2011). Programs designed to educate nurses on how to implement comprehensive communication strategies confidently during the Cancer Clinical Trials (CCT) consent process remain scarce (Nusbaum et al, 2019; Purdom et al., 2017). The purpose of this quality improvement project was to develop, implement, and evaluate the effects of an evidence-based education program on nurse confidence with the use of the teach-back method during the CCT consent process. An evidenced-based education program was developed. It was implemented as a synchronous webinar to members of the International Association of Clinical Research Nurses. Pre and post-test program surveys measuring confidence levels were disseminated. There was an overall increase in post-survey responses suggesting an improvement in confidence levels with the use of the teach-back method during the CCT IC process. Further study can explore if patient understanding of CCTs during the IC process is developed proportionally to levels of nurse confidence with the use of the teach-back method

Use of normalization process theory to explore key stakeholders’ perceptions of the facilitators and barriers to implementing electronic systems for medicines management in hospital settings.

Background: Limited data exist on the facilitators and barriers to implementing electronic systems for medicines management in hospitals. Whilst numerous studies advocate system use in improved patient safety and efficiency within the health service, their rate of adoption in practice has been slow. Objective: To explore the perceptions of key stakeholders towards the facilitators and barriers to implementing electronic prescribing systems, robotic pharmacy systems, and automated medication storage and retrieval systems in public hospital settings using Normalization Process Theory as a theoretical framework. Methods: Individual face-to-face semi-structured interviews were conducted in three public hospitals in Ireland with 23 consenting participants: nine nurses; four pharmacists; two pharmacy technicians; six doctors; and two Information Technology managers. Results: Enhanced patient safety and efficiency in healthcare delivery emerged as key facilitators to system implementation, as well as the need to have clinical champions and a multi-disciplinary implementation team to promote engagement and cognitive participation. Key barriers included inadequate training and organisational support, and the need for ease and confidence in system use to achieve collective action. Conclusions: Many themes that are potentially transferable to other national settings have been identified and extend the evidence base. This will assist organisations around the world to better plan for implementation of medication-related eHealth systems

An Exploration of Knowledge Translation Amongst Homecare Providers, Family Caregivers, and Clients

The aim of this two-phased investigation was to enhance understanding of urinary incontinence (UI) knowledge translation (KT) to inform how UI management knowledge might be translated within in-home nursing practice and family caregiving. Although UI can be managed conservatively, it is a principal reason for the breakdown of family-care and care recipient admission to long-term care. Research has afforded little insight into family caregivers’ experience of KT and the process of in-home KT for UI management. The first study used a hermeneutic phenomenological approach to explore family caregivers’ experience of UI KT. Data were collected from in-depth interviews with a purposive sample of caregivers (n=4) and analyzed with immersion and crystallization interpretive methods. KT was experienced through the social interaction of working together/not working together that was contextualized by homecare and personal attributes. The phase two grounded theory study explored the enactment of in-home KT. In-depth interview data were collected from a theoretical sample of 23 family caregivers, homecare recipients, and homecare providers. Constant comparison and Glaser’s analysis criteria were used to create the substantive theory of Translating Knowledge Through Relating. Findings illuminated how intersubjectivity and bi-directional relational interactions are interlinked in and essential to translating in-home care knowledge which is largely tacit and experiential in nature. Insights afforded understandings about how relational practice is necessary to foster mutual and equitable social construction of KT. The practical application of ‘Translating Knowledge Through Relating’ may constitute an important component of promoting health as a resource for everyday living with UI

Continuity of Care and Shared Decision-Making in Interprofessional Collaborative Maternity Practices in Canada

Problem: The number of maternity care providers varies across Canada. Women from rural communities or those marginalized due to physical, psychological or social issues including newcomers, often experience challenges accessing health care (Fraser Health, 2014; Rogers, 2003). Interprofessional collaborative maternity care [IPCMC] has been credited as a means of increasing access and promoting sustainability of services (Miller et al., 2012; Society of Obstetricians and Gynecologists of Canada, 2008). Midwifery could play a greater role in delivery of services through IPCMC. However, little is known about collaboration in these practices. The purposes of this study are to explore factors influencing enactment of IPCMC and understand whether and how midwives can provide relational care in these practices in ways that are positively evaluated by women and staff. Method: A qualitative multiple case study design was used to explore variations in 4 IPCMC practices in British Columbia, Canada. Sources of data included: observation and semi-structured interviews with staff (n=40) and women receiving care (n=33). Thematic analysis was applied to interview transcripts, observational field notes and analytic notes. Findings and Conclusions: Collaborative care was well received by patients when expectations were clear and continuity of information and philosophy were exercised. Contextual factors influenced development and implementation requiring adaptation over time. Communication, organization, mutual respect and commitment enabled collaboration and relational care. Policy changes to promote and sustain IPCMC include broader definitions of continuity of care; increased support and adoption of integrated funding models. Interprofessional education is needed to develop skills for effective collaboration