Petersen, Carolyn

Personas and patient journey maps are poised to improve human-centered care delivery, and technology design. However, they remain largely underutilized in healthcare settings globally. A persona composite and a journey map inspired by narratives of medical students managing illness in addition to the rigors of academia is presented. This scoping review illustrates how journey mapping and personas are used in healthcare contexts to frame the experiences of patients; formal and informal caregivers; nurses; and physicians. The heterogeneous findings reveal that despite their promise the utility of these tools is largely unexplored in health informatics.

Abstract The Mayo Clinic Center for Clinical and Translational Science Rural Health Research Core emphasizes community engagement to address healthcare access and delivery. In 2023, the Midwest Rural Health Research Community Advisory Board (CAB) was established to guide research. Eleven of 13 researchers presenting to the CAB in 2023 completed a survey assessing influence of CAB feedback across seven domains. All reported >1 domain influenced by CAB feedback, most commonly on study design, pre-research activities and implementation. CAB feedback shaped many aspects of the rural health research process. CAB members valued seeing how their input contributed to the research process.

Introduction Registrational trials are clinical trials which are used to justify regulatory approval of a new medication by the FDA. However, clinical trials may not be designed around patient-centred outcomes, like overall survival (OS) or quality of life. This disconnect raises concerns about whether current trial designs are truly aligned with the long-term needs and priorities of patients. A comprehensive analysis of trial designs and endpoints is necessary to ensure that future oncological therapies deliver meaningful clinical improvements. Our objective was to describe types of clinical trial design and primary endpoints used for registrational trials, and their trends over time. Research design and methods In this cohort study, the HemOnc database was used to identify registrational trials supporting cancer drug approval from 2004 through 2023. Clinical trial design (escalation, de-escalation, in-class switch, out-of-class switch) and primary endpoint (OS; time-to-event including progression-free survival; response-based endpoint) were characterized. Results Escalation trial designs were more common than in-class switches or out-of-class switches. De-escalation and mixed designs were exceedingly rare. The most common primary endpoint was a composite time-to-event endpoint. Conclusion Most clinical trials leading to FDA approval for cancer-directed therapies employ escalation designs with composite time-to-event endpoints. Designs reflecting paradigm shifts in therapy (in-class switches and out-of-class switches) are sparsely used. This approach raises the concern that trials may increase therapeutic toxicity without delivering meaningful improvements in OS or quality of life.

AbstractThe goal of national interoperability is to improve care quality and decrease administrative burden and costs. Patients, providers, and other stakeholders are increasingly concerned that indiscriminate sharing of data may have deleterious, permanent consequences, as well as fail to provide granular control over the sharing of individual health data. Data segmentation and consent standards to date have been limited in scope and implementation, which has hindered efforts to scale data sharing preferences. Shift, an independent expert stakeholder task force, has been convened to mature standards, terminologies, and consensus-driven implementation guidance, which are prerequisites for more robust policy drivers needed to support nationwide sensitive data segmentation and consent capabilities. This paper describes Shift's framework and processes as means to advance equitable interoperability.

Just as healthcare organizations must carefully consider how to incorporate Artificial Intelligence (AI) into patient-facing apps and messaging, so must they also think about how to ethically introduce AI into the workplace. Unreasonable expectations, lack of training, insufficient AI tool maintenance, and other barriers to effective use of AI create significant challenges for leaders that can lead to lower productivity, less effectiveness at work, reduced satisfaction, and burnout. A thoughtful, measured approach to AI design and implementation that incorporates practices supporting user comfort and satisfaction is key to achieving success with AI in the workplace.

Summary Background: Precision prevention involves using biological, behavioral, socioeconomic, and epidemiological data to improve health for a particular individual or group. With almost 63% of the global population using social media, these platforms show promise to deliver tailored messaging and personalized interventions to individuals. Objectives: To describe the personalization elements and behavior components used in a sample of precision prevention interventions delivered through social media. Methods: To identify examples of cases, a search was done on clinicaltrials.gov, searching for ‘other terms: prevention’ + ‘Intervention/Treatment: social media intervention’ + ‘study results: With results. The selected cases were described, personalization elements reported, and their adopted intervention components were coded according to the Behavior Change Wheel (BCW) framework. Results: A total of four cases employing personalization in their interventions were identified. Three of these cases targeted women's health. The intervention period varied from two to eight months, with participant commitment ranging from active involvement on five out of seven days to monthly participation. The BCW interventions of persuasion and incentivization, were most frequently utilized, while education and coercion were used sparingly in the selected cases. Notably, none of the four cases reported the use of training, restrictions, or modeling. Conclusions: Social media has the potential to serve as a tool for digital phenotyping and contribute to the advancement of precision prevention. Challenges include the social media platform set-up and ensuring all ethical considerations are met.

Abstract Objective The American Medical Informatics Association (AMIA) Task Force on Diversity, Equity, and Inclusion (DEI) was established to address systemic racism and health disparities in biomedical and health informatics, aligning with AMIA’s mission to transform healthcare. AMIA’s DEI initiatives were spurred by member voices responding to police brutality and COVID-19’s impact on Black/African American communities. Materials and Methods The Task Force, consisting of 20 members across 3 groups aligned with AMIA’s 2020-2025 Strategic Plan, met biweekly to develop DEI recommendations with the help of 16 additional volunteers. These recommendations were reviewed, prioritized, and presented to the AMIA Board of Directors for approval. Results In 9 months, the Task Force (1) created a logic model to support workforce diversity and raise AMIA’s DEI awareness, (2) conducted an environmental scan of other associations’ DEI activities, (3) developed a DEI framework for AMIA meetings, (4) gathered member feedback, (5) cultivated DEI educational resources, (6) created a Board nominations and diversity session, (7) reviewed the Board’s Strategic Planning for DEI alignment, (8) led a program to increase diversity at the 2020 AMIA Virtual Annual Symposium, and (9) standardized socially-assigned race and ethnicity data collection. Discussion The Task Force proposed actionable recommendations that focused on AMIA’s role in addressing systemic racism and health equity, helping the organization understand its member diversity. Conclusion This work supported marginalized groups, broadened the research agenda, and positioned AMIA as a DEI leader while reinforcing the need for ongoing transformation within informatics.

The World Health Organization’s Operational Framework for Climate Resilient and Low Carbon Health Systems outlines 10 broad components for the development and maintenance of health systems that respond effectively to climate-related challenges. This work analyses the WHO framework from a participatory health informatics perspective and identifies specific initiatives involving non-professionals that align with the framework. Citizen and patient participation in the development of climate-resilient health systems is not only possible but also necessary to maximize climate resiliency at the community and global levels.

The application of digital interventions in healthcare beyond research has been translated in the development of software as a medical device. Along with corresponding regulations for medical devices, there is a need for assessing adverse events to conduct post-market surveillance and to appropriately label digital health interventions to ensure proper use and patient safety. To date unexpected consequences of digital health interventions are neglected or ignored, or at least remain undescribed in literature. This paper is intended to raise awareness across the research community about these upcoming challenges. We recommend that - together with developing a new research field of digitalovigilance - a systematic assessment and monitoring of adverse events and unexpected interactions be included in clinical trials, along with the reporting of such events and the conduct of meta-analyses on critical aspects.