Building on Diana Forsythe’s legacy: the value of human experience and context in biomedical and health informatics

WHERE WE STARTED AND THE PATHS WE HAVE TRAVELLED: WHY A SPECIAL ISSUE HONORING DIANA FORSYTHE’S CONTINUING LEGACY IN INFORMATICS IS NECESSARY AND APPROPRIATE

Diana Forsythe, PhD, was a scholar of biomedical informatics, medical anthropology, artificial intelligence (AI), and feminism. With her upbringing by 2 renowned computer scientists, Drs. Alexandra Illmer Forsythe and George Forsythe, she was aware of the hard problems in computer science during her early years. Although she pursued a graduate degree in cultural anthropology and social demography, she went on to introduce methods, frameworks, and insights from the social sciences and the study of science and technology to the nascent fields of AI and biomedical informatics in the 1980s and1990s. The scope of her work was foundational in establishing people and organizational studies as a subdiscipline within biomedical informatics and as a working group with the American Medical Informatics Association (AMIA). Indeed, the current JAMIA editor-in-chief—a colleague of Diana’s at University of California, San Francisco—asked her to attend and reflect upon a 1997 AMIA workshop that brought together nursing vocabulary developers and other key stakeholders to address the topic of implementing nursing vocabularies in computer-based systems. Her reflections, published in JAMIA,¹ pointed out the importance of culture and embedded practice in concept naming and questioned the need for a single nursing vocabulary. During her relatively brief career, Diana challenged researchers to understand that technology is never neutral and that attitudes and perspectives of researchers and technology developers profoundly influence fundamental aspects of technology design. Her work consistently challenged the field to pay attention to how people intended to use the technology, the social context within which the technology was implemented, and the potential broader and unintended impacts of technology. Through the rigorous application of qualitative methods through the lens of anthropology, her work identified how these factors influenced the intended users of technology in ways that could be detrimental. Throughout her publications and in the landmark posthumously published collection of essays, Studying Those Who Study Us: An Anthropologist in the World of Artificial Intelligence,² Diana questioned inherent assumptions about the design and implementation of technology in medicine. In particular, her work reflected and advocated for the rigorous application of social science theory and methods in biomedical informatics research and practice. She also introduced feminist perspectives into analyses of social and technical contexts, emphasizing how the lived experiences of women intersected with technology development, use, and implementation. Toward this end, recent efforts such as the Women in AMIA Initiative and the AMIA First Look Program have sought to raise the visibility of the contributions of women and individuals from groups typically underrepresented in AMIA.

As a fierce advocate for feminism and ethnography (ie, a subdiscipline of anthropology), Diana’s interactions with biomedical informatics, at the time a field largely dominated by men with computer science and information technology (IT) perspectives, were not always smooth and seamless. Her work, both as a researcher and an anthropologist, was deeply rooted in a sense of social justice and shed light on the needs and rights of disempowered communities.

Additionally, Diana and her colleagues engaged in robust debates regarding rigor, reliability, and validity in qualitative research, including the importance of truly understanding and engaging with social sciences. Since her untimely death in 1997, Diana’s continued influence on the field lives on. As a foundational leader in establishing the important research space that sits at the intersection of social sciences and biomedical informatics, her work sheds light on the relevance of social sciences methods and theories, notably the importance of subjective experience and context, in informatics and computer science fields, which have a dominant perspective of objective reality. Those of us who work in people and organizational spaces in the biomedical informatics field have been profoundly influenced by Diana’s work and have also sought to build on the foundations that she established. The sustained impact of her body of research on the field can be witnessed through discussions at panels at the AMIA Symposium³ and through awards that bear her name including the annual AMIA Diana Forsythe Award honoring an outstanding publication at the intersection of the social sciences and biomedical informatics, the annual American Anthropological Association (AAA) Diana Forsythe Prize, and the Forsythe Dissertation Award for Social Studies of Science, Technology, and Health at the University of California, San Francisco or Stanford University.

The definition of biomedical informatics has rapidly evolved over the last 25 years and is recognized today as a truly interdisciplinary field.^4,5 This broader definition of the field recognizes the social sciences, human factors engineering, cognitive sciences, and multiple other disciplines as core contributors to continued progress in the field. However, too often, a gap still exists in the published biomedical informatics literature in capturing and representing these perspectives critical to the current healthcare context as new advancements and technologies (eg, mobile health, social media, health information exchange) emerge and as we strive to increase diversity of perspectives in the field. Over the last thirty years, researchers have continued to expand the rigorous application of qualitative methods in informatics and to include representation of patient voices and other stakeholder perspectives in technology design efforts. Thus, the time is ideal for a special issue focused on the continuing legacy of Diana Forsythe in biomedical informatics, identifying the current status of qualitative methods and ethnography in biomedical informatics, and charting a path toward the future.

The purpose of our Special Issue was two-fold: to highlight the continued presence of people and organizational focused work in biomedical and health informatics; and to explore future directions for this critically important subdiscipline moving forward. In honoring and continuing Diana’s legacy, this special issue focuses on innovative and interdisciplinary scholarship at the intersection of biomedical informatics and the social sciences. In particular, it highlights the advances in knowledge about: (a) the methods and theories used to understand problems at the intersection of social sciences and informatics; (b) the impact of women and feminism in shaping the field of informatics; and (c) the role of human meaning in developing and implementing health IT and computational tools.

WHERE WE ARE NOW: WHAT WE CAN LEARN FROM THIS SPECIAL ISSUE

Fourteen articles were accepted to this Special Issue from a total of 27 submissions. With the exception of a scoping review,⁶ all articles reported on original research studies at the intersection of informatics and the social sciences (Table 1). The majority of research studies were conducted in the United States,^7–16 with the exception of 3 studies conducted in the United Kingdom,¹⁷ Netherlands,¹⁸ and Saudi Arabia.¹⁹ More than half of the studies were multisite investigations,^7,13–18 while 5 studies were single-site^8–12 and 1 study used an online context, LinkedIn.¹⁹ Most studies received some form of intramural or extramural funding,^{7,8,10,11,13–15,17} acknowledging the relevance and value of applying methods from social sciences to not only understand but also address research questions and clinical problems within biomedical informatics. In addition to the studies targeted at examining practices of patients and clinicians,^{8–12,14–17,19} there has been a recent shift toward broadening the scope of the stakeholder population under inquiry—for example, studies included healthcare researchers,¹³ women managers in the biomedical informatics field,¹⁹ and scribes.⁷ All but 1 study¹⁴ used multiple methods for collecting data. Six studies utilized qualitative methods to understand current workflows and gather user needs and design guidelines for health IT,^{7,8,12,14,16,17} while the remaining studies adopted mixed-methods approaches supported by observations, interviews, artifact collection, and surveys to support design and evaluation of health IT. Most studies used a thematic analytical approach guided by their specific research questions and/or a theoretical framework. A broad range of theoretical frameworks were used to guide the conduct of the study, either at the data collection or analysis stage. Given the interdisciplinary nature of biomedical informatics, the theoretical frameworks reported in these studies were borrowed from other fields such as human computer interaction (HCI), computer supported cooperative work (CSCW), and social sciences.

Table 1.

Summary of studies

Author, Year	Objective	Participants	Data Collection and Analysis	Conceptual Framework	Findings	Implications for Informatics
Hussain et al, 2021	To analyze how qualitative methods have been used in health informatics research, focusing on objectives, populations studied, data collection, analysis methods, and fields of analytical origin.	Healthcare providers, healthcare consumers, and other stakeholders	Scoping review of 158 original research articles published in JAMIA from 1994 to 2019	N/A	Findings showed that qualitative papers constituted 4.2% of overall JAMIA papers and were increasing in publication over time. 76 studies were conducted before intervention deployment, while 77 studies were conducted after deployment. Studies overwhelmingly used interviews, observations, grounded theory, and thematic analysis. Providers have typically been the focus of studies, but there has been an upward trend of papers focusing on healthcare consumers.	While there has been a rich tradition of qualitative inquiry in JAMIA, its scope has been limited when compared with the range of qualitative methods used in other technology-oriented fields, such as HCI, CSCW, and science and technology studies. Recommendations included increasing public funding for and adoption of a broader variety of qualitative methods by scholars, practitioners, and policy makers as well as an expansion of participants studied. These in turn would lead to systems that are more responsive to practical needs, improving usability, safety, and outcomes.
Map the current practice and workflows within their context
Ash et al, 2021	To understand the effect of scribes on documentation quality and EHR-related patient safety.	30 providers, 27 scribes, 24 admins interviewed 25 scribes, 27 providers during observations	76 interviews and 80 observation hours; grounded inductive/hermeneutic approach (thematic analysis)	Sociotechnical framework and Rapid Assessment Process	Providers expressed a positive perspective of scribes. Scribes explained that some negatives to scribing included being at the bottom of the healthcare hierarchy and difficulties with finding a helpful or comfortable provider to work with. Managers sought efficiency, expressing satisfaction with the scribe role. Most scribes were well trained to adjust to the workflow of providers to document patient information efficiently.	Researchers urge further development of guidelines, certification, and licensing of scribes to assure their work is in scope; furthermore, organizations should avoid inappropriate role expansion and, for certain settings, have human rather than virtual scribes in the room. Different models of scribing should be investigated, especially those adopting new technological advances. While the role of nonclinical unlicensed scribes needs to continue to be narrow, there could be an expanded role for individuals, whether already clinically trained or not, licensed specifically as scribes, as vital parts of a new kind of healthcare team.
Fouquet et al, 2021	To examine attending physician documentation workflow in a pediatric emergency department	Survey: 19 ED attending physicians and 3 ED fellows Observations: 11 pediatric emergency medicine attending physicians 288 patients treated	22 documentation surveys, 23 eight-hour shifts observed, 11 postobservation surveys and 288 patient EHR log data; Hierarchical task analysis of patient flow Descriptive statistics, correlation analysis	Systems Engineering Initiative for Patient Safety (SEIPS) model	The 3 main tasks of patient flow were identified in the hierarchical task analysis as: 1) patient entering the system, 2) patient care, and 3) disposition. Multitasking (during resident checkout) and dictation (attending physicians alone) were common documentation strategies. Across 23 observed shifts, 923 interruptions were recorded, with most in the workroom (35 interruptions per shift on average).	Using the SEIPS framework, several factors can be identified that influence attending physician documentation: resident completion, patient acuity, EHR usability and functionality, and physical layout. Recommended interventions and future research categorized by the SEIPS components include exploring differences between attending and physician workflows/strategies, providing in situ training for documentation and exploring different methods of documentation, critically evaluating the safety culture and promotion of psychologically safe systems, and exploring work-relevance and solutions to documentation barriers such as interruptions.
Aldekhyyel et al, 2021	This study aims to understand the impact of social change in the Kingdom of Saudi Arabia in the form of new policies supporting women and health technological advancements in the field of biomedical informatics and its women informaticians. By giving voice to the standpoints of women in biomedical informatics, this study recognizes their experiences as women in a male-dominated field as valuable epistemological tools.	7 women managers in the biomedical informatics field	7 surveys and semi-structured telephone interviews; descriptive statistics and thematic analysis	Feminist standpoint theory	Women managers in the field of biomedical informatics shared similar experiences and perspectives. Our analysis generated 10 themes; (1) career beginning, (2) opportunities given, (3) career achievements, (4) gender-based experiences (5) meaning of biomedical informatics, (6) meaning of health IT tools, (7) challenges, (8) overcoming challenges, (9) future and hopes, and (10) meaning of “2030 Saudi vision.” Early in their careers, participants experienced limited opportunities and misperceptions in understanding what the field of informatics represents. Participants did not feel that gender was an issue, despite what feminist theory would have predicted.	The reluctance to identify gender-related challenges might be a coping mechanism where women may choose not to jeopardize their positions by calling attention to themselves. Without the understanding that women may not readily recognize how discrimination affects their lives, it becomes difficult to overcome discriminatory systems. Social changes have an impact on how women experience career growth, identify past challenges, and on personal perceptions regarding advancement of health IT and the biomedical informatics field. Studies aimed at recognizing and validating the lived experiences of women in science and technology contribute to the collective understanding of how these experiences may enhance knowledge of these fields in the context of healthcare technological advancements and work imbalances.
Information needs and design requirements for developing health IT
Pollack et al, 2021	To explore team-based situational awareness from the perspective of patients and their caregivers, study how it impacts their hospital experience, and identify implications for the design of health IT.	28 pediatric and adult patients and 19 caregivers	94 interviews (2 per person); iterative deductive and inductive coding process	Shared situational awareness (SSA) framework	Reasons to support team SSA: patient autonomy, improve outcomes, manage expectations, create common goals. Barriers to team SSA: poor communication, fear, protection of patients, cognitive challenges, different interpretations, blind trust, unrealistic expectations. Facilitators to team SSA: patient expertise, observation, repetition, empathy, and comfort.	Building SSA through consistent bedside handoff practices and allowing patients to hear recorded physician handoffs could improve patient access to information and minimize clinician workflow burden. Leveraging SSA may provide a mechanism to identify and differentiate individuals into various patient and caregiver personas to better support unique information and communication needs. New collaborative tools should focus on the transmission of goals and expectations between patients, caregivers, and clinicians.
Turner et al, 2021	To understand personal health information management (PHIM) needs and practices of older adult to inform the design of health IT that support older adults.	88 patients age 60 years or older	88 in-depth interviews, 38 feedback surveys; Older adult information organization artifact identification and collection; Inductive thematic analysis, and affinity diagramming, Fisher's exact test for categorical and ordinal characteristics, and multinomial regression	Work System Sociotechnical Model	Analysis revealed 5 key PHIM activities that older adults engage in: seeking, tracking, organizing, sharing health information, and emergency planning. Researchers also identified 3 major themes influencing older adults’ practice of PHIM: (1) Older adults are most concerned with maintaining health and preventing illness; (2) Older adults frequently involve others in PHIM activities; and (3) older adults’ approach to PHIM is situational and context-dependent.	Older adults’ approaches to PHIM depend heavily on context including their health, their social and physical environment, the tools they use, and their living situation. It might be anticipated that most older adults will rarely check the patient portal when healthy and therefore the portal is not necessarily a good venue for routine communications or reminders to update emergency information. PHIM tools that meet the needs of older adults should acknowledge the goal of maintaining health, the dynamics of aging, varied PHIM approaches, and the physical, organizational, and social contexts in which PHIM occurs.
Cantin-Garside et al, 2021	To generate design guidelines for self-injurious behavior (SIB) monitoring technology for individuals with autism spectrum disorder (ASD).	Twenty-three educators and 16 parents of individuals with ASD and SIB	Four focus groups; 17 individual interviews; Content analysis	None	Analysis revealed 8 main themes related to SIB triggers: emotional responses, self-injurious behavior characteristics, management approaches, child/student impact, caregiver impact, and sensory/technology preferences. Two cross-cutting themes related to uncertainty about definitions of SIB, and state of experience related to monitoring SIB (past, present, and anticipated experiences).	SIB monitoring should include adaptive (smart) monitoring technology to learn changing behaviors or new types of SIB, and provide such information to caregivers. SIB management depends on existing resources, caregiver engagement, and support systems. Parent and educator had differences in their perspectives on monitoring and collecting data on SIB. Collaboration between parents and educators supports consistent management methods, typically resulting in more positive management outcomes. This finding supports the need for SIB monitoring harmony.
Phuong et al, 2021	To assess key aspects for developing a robust data sharing solution to share complex disaster-related dataset and to examine information needs of population health researchers to prepare for weather-related disasters.	10 academic population health researchers and 5 government agency health researchers that use health information, policy, and determinants of health data to study health for populations that reside within a specific geographic area	15 semi-structured interviews and card sorting with think-aloud; Interview template analysis. Exploratory sequential mixed-methods analysis: thematic analysis from think-aloud transcripts + data matrices/cluster analysis to quantify relationships	Partnership-Driven Clinically Federated Data Sharing Model	Three groupings for readiness for future hurricane/flood disaster research: planned and prepared/experienced but not prepared/no experience. Collaborative engagement was crucial to fostering working relationships proactively built on trust, respect, autonomy, flexibility, and collaboration between disaster management teams, local health officials, and civilian points-of-contact were critical mechanisms within emergency management plans. Barriers to technology adoption included data gaps, difficulty in learning, limitations in information quality, and transparency issues, while facilitators included situational awareness, considerations for good quality data, adopting community standards, and customizable/attractive tools to learn.	Findings inform the design of IT that can meet the needs of population health researchers in disaster preparedness, such as use of social media, geographic information systems (GIS), and offline data analysis tools. Supportive tools should be accompanied by practice recommendations and adoption of community standards that can support situational awareness, learning capacity, and human resource support necessary for collaborative disaster preparedness. Such tools should follow best practices in data collection, quality assurance, incorporate low learning barriers, and enable offline/analog capacities for use during electrical and telecommunication disruption.
Support human-centered design and evaluation of health IT
Papoutsi et al, 2021	To examine codesign in 3 contrasting case studies of technology-supported change in healthcare and explain its role in influencing project success.	158 patients, caregivers, front-line clinical and administrative staff, IT professionals from public and commercial organizations, and policy makers	158 interviews, over 32 observation sessions, collection of various forms of documentation (published papers, project documentation, etc); Deductive thematic analysis process	Sociotechnical framework	Three key challenges to codesign efforts: identifying and engaging different user groups as prospective users of the technology, either directly or indirectly; balancing the tension between codesign as a separate, preliminary phase versus codesign as an ongoing, perhaps never-ending, process; and ensuring appropriate resources, and human and technological infrastructures are in place to support meaningful codesign practices.	Emphasis on the ongoing, social coproduction of technology-supported services may allow better engagement with the tensions that surface in complex technology projects. A preliminary codesign “phase” helps the technology get to a reasonably mature stage, but iterative, adaptive codesign of the technology in “perpetual beta” mode enables it to become sustainably embedded in the wider service. Reorienting the focus toward technology-supported services also implies a shift from codesigning with technology users to codesigning with patients as service users and with healthcare staff as professionals.
Backonja et al, 2021	To elicit design ideas for informatics solutions to support individuals experiencing menopause.	8 patients who have experienced menopause and 18 healthcare practitioners (nurses, physicians, and complementary and integrative health practitioners)	2 participatory design sessions: introductions, brainstorming, and selection of ideas, prototyping, and prototype presentation and discussion; Directed content analysis	Participatory design	Purpose of the menopausal technology would be to track and monitor patient experiences, moods, physiology, and behavior as well as understand symptoms. There were multiple benefits of using participatory design in menopause informatics research. For example, participatory design allowed researchers to gain rich insights and design ideas that may not have come from interviews or focus groups alone, and the participatory design process provided a space where individuals who experienced menopause could discuss a stigmatized experience.	Tool suggestions included wearable devices, sensors, chips, patches, apps or websites, dictations, and modes to support vision-impaired individuals Features and functionalities included connectivity between devices, access to medical records, communication between women/healthcare practitioners, and women/women. Combining predictive elements with recommendations could be akin to a decision support tool, meaning individuals have more control over their menopause experiences in the real world. Developers can support equitable technology development through culturally informed design.
Hong et al, 2021	To describe challenges nurses face when informatics tools are not designed to accommodate the full complexity of their work.	27 nurses (RNs, BSNs, MSNs, LPNs, MSs)	27 interviews and 20 hours of observation; Inductive-deductive thematic analysis	Orienting frames	Nurses preferred their own judgment over the barcode medication administration (BCMA) system and how this choice adheres to previously established orienting frames, especially “being prepared,” “being organized,” and “being responsible and accountable.” Autonomy was essential for patient and nursing schedule accommodation, time management, and medication verification. BCMA’s primary function of verification was not always achieved, and nurse autonomy in caring for patients were both a key element of nurse satisfaction and patient safety.	Using orienting frames as a lens for understanding nurse work, analysis indicates that nurse autonomy can be compromised by inflexible informatics tools leading to system brittleness, potentially increasing the likelihood of workarounds and subsequent risks to patient safety. Potentially useful strategies for the field to supplant required actions and improve design for nurses include the creation of clinical immersion experiences for technology developers to gain access to the everyday lives of technology end-users and users of simulated clinical environments to test new technologies with users. Nurses continually assess and modify care based on the needs of patients and often engage in patient education during medication administration.
Goedhart et al, 2021	To unravel the assumptions and practices of designers and others responsible for implementation of patient portals and electronic patient health records in the Netherlands to understand how these assumptions impact the dynamics of inclusion and exclusion of citizens in vulnerable circumstances.	3 nurses, 1 medical doctor, 1 CMIO, 1 IT consultant/RN, 4 IT consultants, 1 eHealth program manager, 4 policy advisors, 3 software developers, 1 product manager, 1 research and development manager, 3 CEOs, 1 managing director 14 CMIOs (?)	24 semi-structured interviews and 14 questionnaires Thematic analysis through inductive approach	Diffusion of Innovation theory	Software companies defined healthcare providers, and to a lesser extent, health insurance companies, as their users, and the focus is primarily on the wishes and needs of health professionals to ensure the application works in the current health system. Lack of participant diversity contributed to a lack of awareness of the group of patients with greater difficulties in using new technologies—literacy, socioeconomic position, and educational levels were frequently ignored.	In order to support the equitable design of patient portals in design and implementation practice, CSCW and HCI scholars need to continue to cooperate with main stakeholders to not only better understand bureaucratic or commercial barriers to equitable design but also to find ways to enlist such actors into equitable design. To change a design culture in which the involvement of citizens living in vulnerable circumstances is seen as costly and difficult, a rapprochement between the fields of CSCW and HCI, on the one hand, and health informatics research and design practices, on the other, is significantly important.
Curran et al, 2021	To evaluate a novel EHR-integrated SMART on FHIR application for chronic disease management which uses an integrated display to decrease cognitive load, improve efficiency, and support clinical decision-making of ambulatory providers.	13 primary care providers	26 scenario-based system interactions with eye tracking and mouse/keyboard clicks 13 retrospective interviews with think aloud, 13 workload surveys Open coding and univariate generalized linear models, logistic and linear regression	Cognitive load theory	Overall, performance was significantly better when Disease Manager was used. Participants performed more overall recommended care tasks using Disease Manager vs the usual EHR (81% vs 48%, P < .001) as well as more recommended tasks per minute (0.8 tasks/min vs 0.6 tasks/min, P = .03). Workload surveys revealed that participants favored Disease Manager, but only frustration scores were significant. Participants’ narratives regarding usability were in four 4 general thematic areas: 1) trust in the system is foundational to acceptance, 2) lack of action-feedback disrupts attention, 3) mental model matching is key to cognitive processing, and 4) navigational affordances (cues to action) decrease cognitive load.	The integrated display reduced the number of items users were required to hold in memory during these processes, thus decreasing cognitive load. Users reported that reliable information, appropriate action-feedback, shared mental models, and affordances to guide navigation were key to their ultimate adoption of Disease Manager. The promising results generated from this approach have enabled researchers to produce a SMART on FHIR application for chronic disease management suitable for beta user testing in the clinical setting. As of February 2020, COPD and hypertension modules have been deployed in the production environment in order to evaluate impact on provider efficiency and adherence to clinical guidelines.
Higa et al, 2021	To design and pilot a community-centric diabetes 2 program and to assess how community members’ social capital resources may activate and integrate scarce health service resources to better support community members’ diabetes self-management (DSM) practices.	7 Type 2 diabetes individuals and 7 friends/family members	14 surveys, 7 biometric data collections (A1c level, blood glucose, etc), 14 participant reflections and interviews, observations, teleconference evaluations, text-message qualitative data Mixed deductive-inductive thematic analysis	Action research guided by the social capital theory	Six of the 7 participants with diabetes experienced reduced hemoglobin HbgA1c percentages, with 3 reducing by more than 1%. DSM knowledge and self-care behaviors improved overall. The community-centric model used health IT to increase access to and patient engagement with DSM support by integrating health IT and social support interventions—these resources encouraged more frequent monitoring of blood glucose and improved accountability among patients.	Integrating social support with health IT interventions reinforced DSM education for patients, friends, and family and ongoing, subtle customizations of health IT interventions, tailored to individual dyads, were needed to maintain their engagement. This study demonstrated how drawing on a community’s social capital to integrate formal and informal resources, with social support from friends and family and health IT interventions that facilitate remote access to DSM resources, can contribute to improved health outcomes. The community-centric model provides an approach for the design and implementation of community-led DSM support efforts to complement and supplement clinical efforts.

Abbreviations: ASD, autism spectrum disorder; BCMA, barcode medication administration CMIO, chief medical informatics officer; COPD, chronic obstructive pulmonary disease; CSCW, computer supported cooperative work; DSM, diabetes self-management; ED, emergency department; EHR, electronic health record; FHIR, Fast Healthcare Interoperability Resources; GIS, geographic information system; HCI, human computer interaction; PHIM, personal health information management; SEIPS, systems engineering initiative for patient safety; SIB, self-injurious behavior; SSA, shared situational awareness.

The studies in this issue are in line with the sentiments highlighted in the scoping review by Hussain et al⁶ that synthesized the use of qualitative research methods in informatics research studies published in JAMIA. The authors call for broadening the scope of qualitative methods used in mainstream informatics studies by including methods from technology-oriented fields, conceptualizing informatics as a sociotechnical enterprise, and, lastly, calling for additional financial funding and editorial modifications for reporting studies at the intersection of social sciences and informatics.

We broadly classified the accepted studies based on the purpose of inquiry: (a) to map the current practice and workflows within their context; (b) to ascertain information needs and design requirements for developing health IT; and (c) to support human-centered design and evaluation of health IT to highlight its usability and feasibility within different workflows including assessment of barriers and facilitators.

Three studies examined current workflow and practices: Ash et al,⁷ Fouquet et al,¹⁰ and Aldekhyyel et al.¹⁹ Ash et al⁷ investigated the effect of scribes on documentation quality and electronic health record (EHR)-related patient safety. Informed by the 8-dimensionl sociotechnical framework, the authors highlight the benefits and challenges of using scribes to support provider EHR documentation within the technical, environmental, personal, and organizational dimensions. They also recommend best practices related to the sociotechnical dimensions including the standardization of scribe roles and responsibilities. Also, in this category, Fouquet et al¹⁰ examined attending physician documentation workflow in a pediatric emergency department using mixed methods, while Aldekhyyel et al¹⁹ examined the impact of social change in the Kingdom of Saudi Arabia in the form of new policies supporting women and health technological advancements on the field of biomedical informatics and its women informaticians.

Four studies investigated user experiences and contextual needs to develop guidelines for designing various health IT and its features: Pollack et al,¹⁴ Turner et al,¹⁵ Phoung et al,¹³ and Cantin-Garside et al.⁸ Pollack et al¹⁴ investigated the impact of team-based situational awareness on hospital experience from the perspective of patients and their caregivers. Using data from patient and caregiver interviews, the authors established the need to foster team situational awareness for improving care quality and related outcomes. The paper offers various design ideas to refine existing health IT and healthcare processes to build shared awareness among clinicians and patients/caregivers. Also in this category, Turner et al¹⁵ explored personal health information management (PHIM) needs and practices of older adults to inform the design of health IT, Phuong et al¹³ examined information needs of population health researchers to prepare for weather-related disasters, and Cantin-Garside et al⁸ identified caregiver perspectives and needs related to tracking self-injurious behavior (SIB) of individuals with autism spectrum disorder (ASD) for design and use of SIB monitoring technology.

Six studies reported on various aspects of health IT development including design and usability testing process, implementation and evaluation of newly implemented health IT: Papoutsi et al,¹⁷ Backonja et al,¹⁶ Hong et al,¹² Goedhart et al,¹⁸ Curran et al,⁹ Higa et al.¹¹ Design studies introduced various approaches for eliciting design ideas from end users of health IT including codesign, equitable design and participatory design. We highlight three examples of work in this category, beginning with Papoutsi et al,¹⁷ who examined codesign efforts within the context of 3 case studies of technology-supported change in healthcare and explained its role in influencing project success. Using a mixed-methods approach supported by interviews, observations, and artifact review, the authors identified 3 key challenges to codesign efforts including: (a) identifying and engaging different user groups as prospective users of the technology, either directly or indirectly; (b) balancing the tension between codesign as a separate, preliminary phase versus codesign as an ongoing, perhaps never-ending process; and (c) ensuring appropriate resources and human and IT infrastructures are in place to support meaningful codesign practices. Similarly, Backonja et al¹⁶ adopted a participatory design approach to generate ideas for informatics solutions to support individuals experiencing menopause. This included design ideas for tracking and monitoring experiences of patients undergoing menopause alongside busy work schedules and responsibilities, while fostering independence and empowerment, which is in contrast to tools designed for menopausal symptom management. Hong et al¹² reported on an evaluation study to understand nursing workflow challenges with the use of a Barcode Medication Administration (BCMA) system to organize patient information and verify medication administration. Findings highlight that nurses preferred their own judgment over the BCMA system and the negative impact of the BCMA system on nurse autonomy. Nurse autonomy was compromised by inflexible informatics tools leading to system brittleness, potentially increasing the likelihood of workarounds and subsequent risks to patient safety. Also in this category, Goedhart et al¹⁸ reported on a mixed-methods study to unravel the assumptions and practices of designers and others responsible for implementation of patient portals, Curran et al⁹ evaluated the usability of an EHR-embedded SMART on FHIR application for chronic disease management, and Higa et al¹¹ reported the design and empirical evaluation of a community-centric program that integrates friend-and-family support, community health services, telehealth diabetes self-management education, and mobile technologies.

WHERE SHOULD WE GO NEXT: EMERGING RESEARCH AND IMPLEMENTATION TOPICS

As we move forward, the field of biomedical and health informatics would strongly benefit from integrating qualitative methods and ethnographic lenses with quantitative method philosophies, as highlighted by the collection of articles in this Special Issue. Such mixed-method approaches^20,21 can lead to innovative solutions that can tackle new and profound challenges facing our field. Incorporating both quantitative and qualitative methodologies in a complementary fashion will help in addressing emerging issues at the intersection of social sciences and biomedical informatics. The purpose of social sciences research in informatics, as highlighted by the included articles, is not to produce generalizable research findings. Instead, the contribution of social sciences methods and theory is to emphasize and understand nuances within specific contexts. However, all research studies included in this special issue invariably touched upon the inherent limited generalizability of their findings due to a variety of factors (eg, biases related to sample selection, sampling method, limited sample sizes). Nevertheless, the depth of understanding and knowledge these studies brought to their specific research topics demonstrates the value that qualitative and mixed-methods approaches can contribute to future work in informatics. Quantification and abstraction have important roles in biomedical informatics research and application, but qualitative methods can help uncover a deeper story and a descriptive narrative about the needs, motivations, and lived experiences of intended technology users and other stakeholders including administrators, operational leaders, and technology vendors. Based on the work in this special issue and trends in biomedical and health informatics research, we also highlight several areas that would benefit from increased and rigorous application of social sciences theories and methods: AI and natural language processing (NLP), equitable design and understanding biases, and translational research.

Much of Diana’s work took place when AI approaches and techniques were first emerging in biomedical informatics. Although the specific AI and NLP concepts have evolved substantially since that time, the people and organizational challenges of designing and implementing new IT in real-world settings have grown even more complex. The overall complexity of AI systems, and the lack of transparency in how decisions are made within these systems, pose profound challenges for the intended users of the technology. Incorporating contextual information and understanding and mediating the biases introduced unintentionally by nondiverse data sets and by technology designers continues to be a major area that would benefit from social science methods and frameworks. The need for an integrated “human in the loop” AI perspective within an ethical framework has repeatedly been demonstrated as the biases introduced unintentionally by their developers and as unintended consequences of AI innovations have become clearer.

Along with an increased understanding of the role of biases in technology design, biomedical informatics professionals continue to become more aware of the need for equitable design approaches. For example, women make the majority of healthcare decisions in the United States, both for themselves and for their families, yet the representation of women’s knowledge and respect for women’s expertise in healthcare and in biomedical and health informatics is still an area that would benefit strongly from qualitative methods and the lens of anthropology. A key element of equitable design is engaging multiple stakeholders when designing technology, including working with stakeholders to reconceptualize their work and to understand how health IT can augment their workflows. The need for equitable design includes recognizing inherent biases, both of researchers and of society—clearly highlighted in one of our Special Issue studies on the persistent inequitable design and implementation of portals.¹⁸ Qualitative methodologies are especially well-suited to address these concerns, as these approaches require researchers to document both researcher and participant biases by applying well-established methods to ensure rigor in qualitative research. Additionally, the kind of in-depth data and analyses that qualitative methods produce can assist with uncovering details about bias as we consider AI design, implementation of health IT and personalized health interventions, incorporating social determinants of health into healthcare decision-making, and understanding and addressing intersectionality of gender, race, ethnicity, and other variables in health equity. Reexamining any assumptions about power and agency must be incorporated into future directions, building awareness and integrating knowledge about the complex hierarchies inherent in health and healthcare and between biomedical informaticians and technology users.

One of the most substantial areas where mixed-methods approaches can contribute is gaining insights on both the depth and breadth of translational research to build a learning health system. As needs to incorporate patient-generated health data and shared decision-making with patients and families increase, qualitative methods can yield crucially important knowledge to inform design and evaluate system implementation. Implementing findings and recommendations from laboratory and data analytics approaches in real-world contexts requires a rich understanding of contextual factors and barriers/facilitators to implementation of sociotechnical interventions. This is a lesson that biomedical and health informatics researchers have learned repeatedly over the history of the field, and paying attention to this requirement as we enter an era of personalized medicine has potential to greatly increase the chance of success for novel sociotechnical interventions.

To propel research and impact of biomedical informatics on healthcare, we must move beyond data, information, and technology and toward sociotechnical systems that recognize both people and technologies and their interdependencies within the organizational context. The need for social sciences research in biomedical informatics has never been greater, as the articles included in this special issue demonstrate. Building on the contributions and legacy of Diana Forsythe’s foundational work, we believe that informatics researchers and practitioners are well-positioned to adopt and apply integrated methodological and theoretical frameworks from both the social sciences and technology disciplines as new technologies, new work contexts, and new societal factors shape future directions of biomedical and health informatics research and practice.