Introduction: Cardiovascular disease (CVD) is a good example of a high complex, multi-morbid, chronic condition. This asks for multidisciplinary and transmural collaboration and communication between caretakers, forming a care continuum. Research is often conducted outside routine practice, namely in randomized controlled trials and dedicated cohorts with strict in- and exclusion criteria. Since our real world patient does not fit these criteria, generated evidence does not always translate to practice. Yet, we can learn from each patient. Within a learning healthcare system (LHS), data collection in routine daily practice is used as input for analysis , interpretation and actionable feedback . CVD management (CVRM) guidelines provide various recommendations for diagnosis, modification and referral from primary to secondary or tertiary care for the evaluation of a CV condition. Starting with uniform structured collection of the CVD risk profile in the our hospital in all patients, we developed a learning health care system focused on CVD risk management. Hypothesis: We hypothesize that a learning health care system improves CVD risk management. Methods: Embedded in routine clinical practice, the Utrecht Cardiovascular Cohort (UCC) supports structured and uniform assessment and registration of guideline based CVD risk profile in the electronic health record across all departments. We studied, with data from 2800 participants, data collection (uniform and linkage); data extraction ((un)structured); data analysis (missings); and actionable feedback (computer decision support system). Results: Establishment of UCC resulted in more complete CVD risk profile: increase in risk factor completeness ranged from 8% (eGFR) to 50% (HbA1c). Linking UCC patient data to general practitioner records, showed considerable gaps in transmural CVD communication: from GP to specialist and from specialist to GP. To address missing information in electronic health records we developed a text mining algorithm to detect smoking status: algorithm showed a 99% yield, a positive and negative predictive value of 65% and 95%. We developed strategies to handle missing data for risk prediction on an individual level in a ‘live’ setting: joint conditional model led to a lower mean squared error (the lower, the more precise estimates). We developed a CVD risk management computerized decision support system embedded in our electronic health record, filled with extracted information and incorporating all lessons learned from reviews, clinician expert opinions, and patient expert opinions. This dashboard, favorably received by physicians, shows in the consulting room the CVD risk profile, potential treatment effects in one glance and helps with shared decision making. Conclusions: Our learning health care approach shows improvement in some areas and provides actionable leads for further improvement.
Read full abstract