Designing mobile health to align with the social determinants of health.

The maternal health crisis in the United States is becoming increasingly worse, with disparities continuing to escalate among marginalized populations. mHealth can contribute to addressing the Social Determinants of Health (SDOH) that produce inequities in maternal morbidity and mortality. Reducing inequities through mHealth can be achieved by designing these technologies to align with SDOH. As mHealth developed to support maternal health has primarily supported the extension of clinical care, there is an opportunity to integrate frameworks and methods from human factors/ergonomics and public health to produce thorough comprehension of SDOH through intentional partnerships with marginalized populations. Potential for this opportunity is presented through a case study derived from a community-based participatory research process focused on transportation access to maternal health services. Through multi-faceted, interdisciplinary, and community-based approaches to designing mHealth that attends to the systemic factors that generate and escalate inequities, improvements in the maternal health crisis could be realized.

Consumer Health Informatics for Racial and Ethnic Minoritized Communities: Minor Progress, Major Opportunities.

OBJECTIVE: By reducing barriers to accessing health services and by supporting health management, consumer health informatics has the potential to reduce health disparities. Yet, technologies are still being designed without considerations for racial and ethnic minoritized populations. This paper reviews consumer health informatics research within this population to assess for whom and how such technologies are being designed. METHODS: We searched four databases from January 2020- December 2021 for literature focused on consumer health informatics and racial and ethnic minoritized populations. We extracted information about the study population, geographic location, stage of the design lifecycle, culturally tailored approaches, community engagement strategies, and considerations for the social determinants of health. RESULTS: Twenty articles were included in the review. Most of the included literature were original research articles that tested health management interventions focused on one racial or ethnic minoritized population primarily within a confined geographic area within the United States. Seven studies described the extent to which an intervention was culturally tailored, including modifying the content, interface, functionality, and platform. Community engagement strategies varied, but few articles employed robust approaches. Lastly, seven studies detailed considerations for the social determinants of health, including providing hardware to access interventions and incorporating information about community-based resources within an intervention. CONCLUSIONS: There has been moderate progress in consumer health informatics focused on racial and ethnic minoritized populations and many opportunities remain for these technologies to be used as an approach to address health disparities. Future research should utilize community engagement strategies to design interventions that are attune to multiple racial and ethnic minoritized populations across geographic regions in addition to numerous intersectional identities and multiple co-morbidities.

The lived experience during the peri-diagnostic period of breast cancer: A scoping review.

OBJECTIVES: The aim of this scoping review is to provide an overview of the existing research that investigates the lived experience during the peri-diagnostic period of breast cancer. METHODS: Nine databases were searched for relevant literature between January 2007 and April 2019. Data were extracted and categorized using deductive and inductive approaches. RESULTS: A majority of the 66 studies included used qualitative methods to retrospectively explore the treatment decision making process of female breast cancer patients. Patients experienced uncertainty, emotional distress, and a need for more information from providers and relied on social support and family guidance during this period. CONCLUSIONS: The results of this review show that the burdens experienced during the peri-diagnostic period parallel those in later periods of cancer care. However, these burdens are prompted by different circumstances. More research is needed to explore the lived experience during this period through the use of mixed-methods and by recruiting a diverse sample with regards to role in the breast cancer experience, age, gender, race, and ethnicity. PRACTICE IMPLICATIONS: Interventions positioned at earlier points in the breast cancer experience should provide informational support, which could be delivered through shared decision making models. Additional support could be facilitated by patient navigation programs and health information technology.

Engaging the disability community in informatics research: rationales and practical steps.

As the informatics community grows in its ability to address health disparities, there is an opportunity to expand our impact by focusing on the disability community as a health disparity population. Although informaticians have primarily catered design efforts to one disability at a time, digital health technologies can be enhanced by approaching disability from a more holistic framework, simultaneously accounting for multiple forms of disability and the ways disability intersects with other forms of identity. The urgency of moving toward this more holistic approach is grounded in ethical, legal, and design-related rationales. Shaped by our research and advocacy with the disability community, we offer a set of guidelines for effective engagement. We argue that such engagement is critical to creating digital health technologies which more fully meet the needs of all disabled individuals.

Designing Consumer Health Information Technology to Support Biform and Articulation Work: A Qualitative Study of Diet and Nutrition Management as Patient Work.

BACKGROUND: Diet and nutrition management is an integral component of Crohn disease (CD) management. This type of management is highly variable and individualized and, thus, requires personalized approaches. Consumer health information technology (CHIT) designed to support CD management has typically supported this task as everyday life work and, not necessarily, as illness work. Moreover, CHIT has rarely supported the ways in which diet and nutrition management requires coordination between multiple forms of patient work. OBJECTIVE: The purpose of this study was to investigate diet and nutrition management as biform work, identify components of articulation work, and provide guidance on how to design CHIT to support this work. METHODS: We performed a qualitative study in which we recruited participants from CD-related Facebook pages and groups. RESULTS: Semistructured interviews with 21 individuals showed that diet and nutrition management strategies were highly individualized and variable. Four themes emerged from the data, emphasizing the interactions of diet and nutrition with physical, emotional, information, and technology-enabled management. CONCLUSIONS: This study shows that the extent to which diet and nutrition management is biform work fluctuates over time and that articulation work can be continuous and unplanned. The design guidance specifies the need for patient-facing technologies to support interactions among diet and nutrition and other management activities such as medication intake, stress reduction, and information seeking, as well as to respond to the ways in which diet and nutrition management needs change over time.

Meeting the challenge: Health information technology's essential role in achieving precision medicine.

Precision medicine can revolutionize health care by tailoring treatments to individual patient needs. Advancing precision medicine requires evidence development through research that combines needed data, including clinical data, at an unprecedented scale. Widespread adoption of health information technology (IT) has made digital clinical data broadly available. These data and information systems must evolve to support precision medicine research and delivery. Specifically, relevant health IT data, infrastructure, clinical integration, and policy needs must be addressed. This article outlines those needs and describes work the Office of the National Coordinator for Health Information Technology is leading to improve health IT through pilot projects and standards and policy development. The Office of the National Coordinator for Health Information Technology will build on these efforts and continue to coordinate with other key stakeholders to achieve the vision of precision medicine. Advancement of precision medicine will require ongoing, collaborative health IT policy and technical initiatives that advance discovery and transform healthcare delivery.

Ensuring full participation of people with disabilities in an era of telehealth.

The widespread use of telehealth resulting from the COVID-19 pandemic has the potential to further exacerbate inequities faced by people with disabilities. Although, for some members of the disability community, the option to engage with telehealth may result in reduced barriers to care, for others, inadequate attention to the design, implementation, and policy dimensions may be detrimental. Addressing such considerations is imperative to mitigate health inequities faced by the disability community.

Informatics-enabled citizen science to advance health equity.

The COVID-19 pandemic has once again highlighted the ubiquity and persistence of health inequities along with our inability to respond to them in a timely and effective manner. There is an opportunity to address the limitations of our current approaches through new models of informatics-enabled research and clinical practice that shift the norm from small- to large-scale patient engagement. We propose augmenting our approach to address health inequities through informatics-enabled citizen science, challenging the types of questions being asked, prioritized, and acted upon. We envision this democratization of informatics that builds upon the inclusive tradition of community-based participatory research (CBPR) as a logical and transformative step toward improving individual, community, and population health in a way that deeply reflects the needs of historically marginalized populations.