Digital population health studies, delivered through a web portal (web-based) or smartphone app (app-based), have demonstrated noteworthy advantages across the research study lifecycle. However, given rapid innovation and the rising value of user-generated data, there is urgency to further demystify the equity and ethical gaps that exist in digital population health research. This dissertation investigates how factors unique to research participants and digital studies may relate to perceptions that influence one’s ultimate decision to participate in digital health research.

The first paper identifies sociodemographic and clinical characteristics that predict patients’ decision to participate in the Health eHeart Study, a web-based study, following an email recruitment campaign. Findings show that while email demonstrated some advantages with recruitment, the underrepresentation of racial/ethnic minorities and those of lower SES was found to persist even at the early enrollment stages of a digital research study.

The second paper examines how informed consent is obtained and upheld for the collection and use of participant’s personal health data in unregulated app-based studies, in the context of the COVID-19 pandemic. There is evidence to suggest that the informed consent practices among those with an intention to conduct unregulated health research are insufficient in safeguarding the autonomy and welfare of users and/or participants.

The third paper determines whether the application of blockchain technology in a women’s health-focused app-based study augments participant perceptions and expectations on trust, privacy, control, and ownership when sharing their personal health data for research purposes. The study revealed that blockchain-enhanced capabilities were ultimately secondary in value to participant fundamental expectations (e.g., communication with researchers, return of findings) with research in general.

Together, this dissertation hopes to contribute valuable empirical insights that illuminate evolving equity and ethical challenges in digital population health research and reveal the potential of emerging technologies as mediating solutions.

Prior research indicates that human service care providers experience especially high levels of chronic workplace stress and burnout compared to workers in other professions. Chronic workplace stress is linked to a variety of poor physical and mental health outcomes. There has been significantly more research to assess and support human service care providers in education, social welfare, and health care than providers working in law enforcement such as the population considered in this case study: juvenile justice officers, JJOs. In particular, there has been little prior research on juvenile justice officers (JJOs), who have the difficult job of working closely with incarcerated youth populations.

The intended contributions of this study are: (1) developing a descriptive baseline understanding of stress among an important and understudied population of human service care providers, (2) exploring human service care provider workplace stress through a new lens of empathy and meaning and (3) piloting a training to reduce stress with a focus on facilitating empathy and meaning. This research is carried out over three phases.

The promising insights from the case study and pilot analysis include strategies to support JJOs finding meaning in their workplace. These strategies are achieved through creating opportunities for building relationships and empathy with youth and coworkers, improving the system for communication and positive feedback with management and teaching emotion regulation, mindfulness and empathic communication to improve individual coping skills.