An overview of our multi-year project funded by NIH National Library of Medicine to build a and suite of tools and personal library for people with . A Collaboration with Katy Borner, Wendy Miller, the Epilepsy Foundation of America, and many others.
arxiv.org/abs/2405.05229

myAURA: Personalized health library for epilepsy management via knowledge graph sparsification and visualization

Objective: We report the development of the patient-centered myAURA application and suite of methods designed to aid epilepsy patients, caregivers, and researchers in making decisions about care and self-management. Materials and Methods: myAURA rests on the federation of an unprecedented collection of heterogeneous data resources relevant to epilepsy, such as biomedical databases, social media, and electronic health records. A generalizable, open-source methodology was developed to compute a multi-layer knowledge graph linking all this heterogeneous data via the terms of a human-centered biomedical dictionary. Results: The power of the approach is first exemplified in the study of the drug-drug interaction phenomenon. Furthermore, we employ a novel network sparsification methodology using the metric backbone of weighted graphs, which reveals the most important edges for inference, recommendation, and visualization, such as pharmacology factors patients discuss on social media. The network sparsification approach also allows us to extract focused digital cohorts from social media whose discourse is more relevant to epilepsy or other biomedical problems. Finally, we present our patient-centered design and pilot-testing of myAURA, including its user interface, based on focus groups and other stakeholder input. Discussion: The ability to search and explore myAURA's heterogeneous data sources via a sparsified multi-layer knowledge graph, as well as the combination of those layers in a single map, are useful features for integrating relevant information for epilepsy. Conclusion: Our stakeholder-driven, scalable approach to integrate traditional and non-traditional data sources, enables biomedical discovery and data-powered patient self-management in epilepsy, and is generalizable to other chronic conditions.

arxiv.org

So happy this NLM-NIH sponsored work with @alfonsovalencia , @jonsv89, Rion Correia et al is out @BMCMedicine!

We study with longitudinal and study of revealing in .

bmcmedicine.biomedcentral.com/

Prevalence and differences in the co-administration of drugs known to interact: an analysis of three distinct and large populations - BMC Medicine

Background The co-administration of drugs known to interact greatly impacts morbidity, mortality, and health economics. This study aims to examine the drug–drug interaction (DDI) phenomenon with a large-scale longitudinal analysis of age and gender differences found in drug administration data from three distinct healthcare systems. Methods This study analyzes drug administrations from population-wide electronic health records in Blumenau (Brazil; 133 K individuals), Catalonia (Spain; 5.5 M individuals), and Indianapolis (USA; 264 K individuals). The stratified prevalences of DDI for multiple severity levels per patient gender and age at the time of administration are computed, and null models are used to estimate the expected impact of polypharmacy on DDI prevalence. Finally, to study actionable strategies to reduce DDI prevalence, alternative polypharmacy regimens using drugs with fewer known interactions are simulated. Results A large prevalence of co-administration of drugs known to interact is found in all populations, affecting 12.51%, 12.12%, and 10.06% of individuals in Blumenau, Indianapolis, and Catalonia, respectively. Despite very different healthcare systems and drug availability, the increasing prevalence of DDI as patients age is very similar across all three populations and is not explained solely by higher co-administration rates in the elderly. In general, the prevalence of DDI is significantly higher in women — with the exception of men over 50 years old in Indianapolis. Finally, we show that using proton pump inhibitor alternatives to omeprazole (the drug involved in more co-administrations in Catalonia and Blumenau), the proportion of patients that are administered known DDI can be reduced by up to 21% in both Blumenau and Catalonia and 2% in Indianapolis. Conclusions DDI administration has a high incidence in society, regardless of geographic, population, and healthcare management differences. Although DDI prevalence increases with age, our analysis points to a complex phenomenon that is much more prevalent than expected, suggesting comorbidities as key drivers of the increase. Furthermore, the gender differences observed in most age groups across populations are concerning in regard to gender equity in healthcare. Finally, our study exemplifies how electronic health records’ analysis can lead to actionable interventions that significantly reduce the administration of known DDI and its associated human and economic costs.

bmcmedicine.biomedcentral.com

New paper from our our NIH-NLM funded project to develop a user-centered app for patients.

Understanding Contexts and Challenges of Information Management for epilepsy Care
dl.acm.org/doi/10.1145/3544548

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