Local data commons: the sleeping beauty in the community of data commons.

BACKGROUND: Public Data Commons (PDC) have been highlighted in the scientific literature for their capacity to collect and harmonize big data. On the other hand, local data commons (LDC), located within an institution or organization, have been underrepresented in the scientific literature, even though they are a critical part of research infrastructure. Being closest to the sources of data, LDCs provide the ability to collect and maintain the most up-to-date, high-quality data within an organization, closest to the sources of the data. As a data provider, LDCs have many challenges in both collecting and standardizing data, moreover, as a consumer of PDC, they face problems of data harmonization stemming from the monolithic harmonization pipeline designs commonly adapted by many PDCs. Unfortunately, existing guidelines and resources for building and maintaining data commons exclusively focus on PDC and provide very little information on LDC. RESULTS: This article focuses on four important observations. First, there are three different types of LDC service models that are defined based on their roles and requirements. These can be used as guidelines for building new LDC or enhancing the services of existing LDC. Second, the seven core services of LDC are discussed, including cohort identification and facilitation of genomic sequencing, the management of molecular reports and associated infrastructure, quality control, data harmonization, data integration, data sharing, and data access control. Third, instead of commonly developed monolithic systems, we propose a new data sharing method for data harmonization that combines both divide-and-conquer and bottom-up approaches. Finally, an end-to-end LDC implementation is introduced with real-world examples. CONCLUSIONS: Although LDCs are an optimal place to identify and address data quality issues, they have traditionally been relegated to the role of passive data provider for much larger PDC. Indeed, many LDCs limit their functions to only conducting routine data storage and transmission tasks due to a lack of information on how to design, develop, and improve their services using limited resources. We hope that this work will be the first small step in raising awareness among the LDCs of their expanded utility and to publicize to a wider audience the importance of LDC.

Mobility Levels With Physical Rehabilitation Delivered During and After Extracorporeal Membrane Oxygenation: A Marker of Illness Severity or an Indication of Recovery?

OBJECTIVE: The aims of this study were to determine whether physical rehabilitation intervention for individuals who required extracorporeal membrane oxygenation (ECMO) is associated with clinical outcomes and to assess whether the patient mobility response over initial rehabilitation sessions early in the intensive care unit (ICU) course predicts or is associated with survival, lengths of stay, discharge disposition, and 30-day readmissions. METHODS: This study was a 10-year retrospective practice analysis of adults who were critically ill and required ECMO for >72 hours in the cardiothoracic ICU at an academic medical center. Physical rehabilitation implemented during or following the initiation of ECMO was quantified on the basis of timing, frequency, and change in mobility level in response to the intervention over the first 4 consecutive sessions. The primary dependent outcome was in-hospital mortality. Secondary outcomes included 30-day readmission and discharge disposition ranked on an ordinal scale. RESULTS: Three hundred fifteen individuals (mean age = 50 years [SD = 15 years]; 63% men; mean Sequential Organ Failure Assessment score = 11.6 [SD = 3.3]) met the inclusion criteria. Two hundred eighteen individuals (69%) received at least 1 physical rehabilitation session while requiring ECMO, 70 (22%) received rehabilitation after ECMO was discontinued, and 27 (9%) never received rehabilitation. Individuals discharged alive achieved higher mobility levels and had a steeper, more positive rate of change in mobility over the first 4 sessions than individuals who died in the hospital (2.8 vs 0.38; degrees of freedom = 199, t = 8.24). Those who received rehabilitation and achieved the milestones of sitting on the edge of the bed and walking for >45 m were more likely to survive (47% vs 13%; χ2 = 156) than those who did not (26% vs 3.5%; χ2 = 80). CONCLUSION: A positive rate of change in mobility and the ability to achieve mobility milestones with rehabilitation were associated with improved clinical outcomes. IMPACT: An individual's mobility response to physical rehabilitation early in the ICU course is an important indicator of illness and should be used with clinical presentation to guide clinical decision-making and predict outcomes.