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1. Digital Health Apps in the Clinical Care of Inflammatory Bowel Disease: Scoping Review

   https://doi.org/10.2196/14630  

   Yin, Andrew Lukas ; Hachuel, David ; Pollak, John P ; Scherl, Ellen J ; Estrin, Deborah ( January 2019 , Journal of Medical Internet Research)

   Background Digital health is poised to transform health care and redefine personalized health. As Internet and mobile phone usage increases, as technology develops new ways to collect data, and as clinical guidelines change, all areas of medicine face new challenges and opportunities. Inflammatory bowel disease (IBD) is one of many chronic diseases that may benefit from these advances in digital health. This review intends to lay a foundation for clinicians and technologists to understand future directions and opportunities together. Objective This review covers mobile health apps that have been used in IBD, how they have fit into a clinical care framework, and the challenges that clinicians and technologists face in approaching future opportunities. Methods We searched PubMed, Scopus, and ClinicalTrials.gov to identify mobile apps that have been studied and were published in the literature from January 1, 2010, to April 19, 2019. The search terms were (“mobile health” OR “eHealth” OR “digital health” OR “smart phone” OR “mobile app” OR “mobile applications” OR “mHealth” OR “smartphones”) AND (“IBD” OR “Inflammatory bowel disease” OR “Crohn's Disease” (CD) OR “Ulcerative Colitis” (UC) OR “UC” OR “CD”), followed by further analysis of citations from the results. We searched the Apple iTunes app store to identify a limited selection of commercial apps to include for discussion. Results A total of 68 articles met the inclusion criteria. A total of 11 digital health apps were identified in the literature and 4 commercial apps were selected to be described in this review. While most apps have some educational component, the majority of apps focus on eliciting patient-reported outcomes related to disease activity, and a few are for treatment management. Significant benefits have been seen in trials relating to education, quality of life, quality of care, treatment adherence, and medication management. No studies have reported a negative impact on any of the above. There are mixed results in terms of effects on office visits and follow-up. Conclusions While studies have shown that digital health can fit into, complement, and improve the standard clinical care of patients with IBD, there is a need for further validation and improvement, from both a clinical and patient perspective. Exploring new research methods, like microrandomized trials, may allow for more implementation of technology and rapid advancement of knowledge. New technologies that can objectively and seamlessly capture remote data, as well as complement the clinical shift from symptom-based to inflammation-based care, will help the clinical and health technology communities to understand the full potential of digital health in the care of IBD and other chronic illnesses. 

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2. Patients Waiting for Cues: Information Asymmetries and Challenges in Sharing Patient-Generated Data in the Clinic

   https://doi.org/10.1145/3512954  

   Oh, Chi Young ; Luo, Yuhan ; St. Jean, Beth ; Choe, Eun Kyoung ( March 2022 , Proceedings of the ACM on Human-Computer Interaction)

   Patient-generated data (PGD) show great promise for informing the delivery of personalized and patient-centered care. However, patients' data tracking does not automatically lead to data sharing and discussion with clinicians, which can make it difficult to utilize and derive optimal benefit from PGD. In this paper, we investigate whether and how patients share their PGD with clinicians and the types of challenges that arise within this context. We describe patients' immediate experiences of PGD sharing with clinicians, based on our short onsite interviews with 57 patients who had just met with a clinician at a university health center. Our analyses identified overarching patterns in patients' PGD sharing practices and the associated challenges that arise from the information asymmetry between patients and clinicians and from patients' reliance on their memory to share their PGD. We discuss the implications of our findings for designing PGD-integrated health IT systems in ways to support patients' tracking of relevant PGD, clinicians' effective engagement with patients around PGD, and the efficient sharing and review of PGD within clinical settings. 

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3. Physiologic signatures within six hours of hospitalization identify acute illness phenotypes

   https://doi.org/10.1371/journal.pdig.0000110  

   Ren, Yuanfang ; Loftus, Tyler J. ; Li, Yanjun ; Guan, Ziyuan ; Ruppert, Matthew M. ; Datta, Shounak ; Upchurch, Gilbert R. ; Tighe, Patrick J. ; Rashidi, Parisa ; Shickel, Benjamin ; et al ( October 2022 , PLOS Digital Health)

   Keim-Malpass, Jessica (Ed.)

   During the early stages of hospital admission, clinicians use limited information to make decisions as patient acuity evolves. We hypothesized that clustering analysis of vital signs measured within six hours of hospital admission would reveal distinct patient phenotypes with unique pathophysiological signatures and clinical outcomes. We created a longitudinal electronic health record dataset for 75,762 adult patient admissions to a tertiary care center in 2014–2016 lasting six hours or longer. Physiotypes were derived via unsupervised machine learning in a training cohort of 41,502 patients applying consensus k -means clustering to six vital signs measured within six hours of admission. Reproducibility and correlation with clinical biomarkers and outcomes were assessed in validation cohort of 17,415 patients and testing cohort of 16,845 patients. Training, validation, and testing cohorts had similar age (54–55 years) and sex (55% female), distributions. There were four distinct clusters. Physiotype A had physiologic signals consistent with early vasoplegia, hypothermia, and low-grade inflammation and favorable short-and long-term clinical outcomes despite early, severe illness. Physiotype B exhibited early tachycardia, tachypnea, and hypoxemia followed by the highest incidence of prolonged respiratory insufficiency, sepsis, acute kidney injury, and short- and long-term mortality. Physiotype C had minimal early physiological derangement and favorable clinical outcomes. Physiotype D had the greatest prevalence of chronic cardiovascular and kidney disease, presented with severely elevated blood pressure, and had good short-term outcomes but suffered increased 3-year mortality. Comparing sequential organ failure assessment (SOFA) scores across physiotypes demonstrated that clustering did not simply recapitulate previously established acuity assessments. In a heterogeneous cohort of hospitalized patients, unsupervised machine learning techniques applied to routine, early vital sign data identified physiotypes with unique disease categories and distinct clinical outcomes. This approach has the potential to augment understanding of pathophysiology by distilling thousands of disease states into a few physiological signatures. 

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4. “Going Rogue”: Re-coding Resistance with Type 1 Diabetes

   https://doi.org/10.14361/dcs-2018-0208  

   Gottlieb, Samantha D. ; Cluck, Jonathan ( December 2018 , Digital Culture & Society)

   null (Ed.)

   Abstract This paper explores our collaborative STS and anthropological project with type 1 diabetes (T1D) hardware “hacking” communities, whose work focuses on reverse-engineering and extracting data from medical devices such as insulin pumps and continuous glucose monitoring systems (CGMS) to create do-it-yourself artificial pancreas systems (APS). Rather than using these devices within their prescriptive and prescribed purposes (surveillance and treatment monitoring), these “hackers” repurpose, reinterpret, and redirect of the possibilities of medical surveillance data in order to reshape their own treatment. Through “deliberate non-compliance” (Scibilia 2017) with cliniciandeveloped treatment guidelines, T1D device hackers deliberatively engage with clinicians’ conceptions and formulations of what constitutes “good treatment” and empower themselves in discussions about the effectiveness of treatment guidelines. Their non-compliance is, however, neither negligence, as implied by the medical category of patients who fail to comply with clinical orders, nor ignorance, but a productive and creative response to their embodied expertise, living with a chronic and potentially deadly condition. Our interlocutors’ explicit connections with the free and open source software principles suggests the formation of a “recursive public” (Kelty 2008) in diabetes research and care practices, from a patient-centered “medical model” to a diverse and divergent patient-led model. The philosophical and ethical underpinnings of the open source and collaborative strategies these patients draw upon radically reshape the principles that drive the commercial health industry and government regulatory structures. 

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5. Reimagining Connected Care in the Era of Digital Medicine

   https://doi.org/10.2196/34483  

   Mann, Devin M ; Lawrence, Katharine ( January 2022 , JMIR mHealth and uHealth)

   The COVID-19 pandemic accelerated the adoption of remote patient monitoring technology, which offers exciting opportunities for expanded connected care at a distance. However, while the mode of clinicians’ interactions with patients and their health data has transformed, the larger framework of how we deliver care is still driven by a model of episodic care that does not facilitate this new frontier. Fully realizing a transformation to a system of continuous connected care augmented by remote monitoring technology will require a shift in clinicians’ and health systems’ approach to care delivery technology and its associated data volume and complexity. In this article, we present a solution that organizes and optimizes the interaction of automated technologies with human oversight, allowing for the maximal use of data-rich tools while preserving the pieces of medical care considered uniquely human. We review implications of this “augmented continuous connected care” model of remote patient monitoring for clinical practice and offer human-centered design-informed next steps to encourage innovation around these important issues. 

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