Novel approach to utilizing electronic health records for dermatologic research: Developing a multi-institutional federated data network for clinical and translational research in psoriasis and psoriatic arthritis

Armstrong, April W.; Reddy, Shalini B.; Garg, Amit

doi:10.5070/d385f777mm

Cited by 5 publications

(1 citation statement)

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“…When examining data sources, researchers and clinicians must consider 6 major factors: (1) Are the data valid? Do they accurately represent the information sought by the investigators?…”

Section: How To Evaluate Large Databases For Research In Psoriasis An...mentioning

confidence: 99%

Outcomes Research in Psoriasis and Psoriatic Arthritis Using Large Databases and Research Networks: A Report from the GRAPPA 2013 Annual Meeting

2014

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Advances in healthcare informatics have increased the ability to address real-world, clinically relevant questions using large databases. When examining data sources, researchers and clinicians need to consider data validity, potential sources of misclassification, whether the source is sufficiently powered to detect clinically relevant differences, ability to obtain longitudinal data, containment of patients within a database, and ability to obtain structured point-of-care data. Population-based databases create opportunities for characterizing natural history of psoriatic diseases, conducting comparative effectiveness research, determining comorbidities, and providing epidemiology-based rational approaches to mechanistic investigations. Herein, we discuss the major data sources for clinical research in psoriasis, including electronic medical records, research networks, disease registries, and others.

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“…When examining data sources, researchers and clinicians must consider 6 major factors: (1) Are the data valid? Do they accurately represent the information sought by the investigators?…”

Section: How To Evaluate Large Databases For Research In Psoriasis An...mentioning

confidence: 99%

Outcomes Research in Psoriasis and Psoriatic Arthritis Using Large Databases and Research Networks: A Report from the GRAPPA 2013 Annual Meeting

2014

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BigMouth: a multi-institutional dental data repository

Walji

Kalenderian

Stark

et al. 2014

J Am Med Inform Assoc

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Few oral health databases are available for research and the advancement of evidence-based dentistry. In this work we developed a centralized data repository derived from electronic health records (EHRs) at four dental schools participating in the Consortium of Oral Health Research and Informatics. A multi-stakeholder committee developed a data governance framework that encouraged data sharing while allowing control of contributed data. We adopted the i2b2 data warehousing platform and mapped data from each institution to a common reference terminology. We realized that dental EHRs urgently need to adopt common terminologies. While all used the same treatment code set, only three of the four sites used a common diagnostic terminology, and there were wide discrepancies in how medical and dental histories were documented. BigMouth was successfully launched in August 2012 with data on 1.1 million patients, and made available to users at the contributing institutions.

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Real-world health outcomes in adults with moderate-to-severe psoriasis in the United States: a population study using electronic health records to examine patient-perceived treatment effectiveness, medication use, and healthcare resource utilization

et al. 2018

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BackgroundLittle is known regarding real-world health outcomes data among US psoriasis patients, but electronic health records (EHR) that collect structured data at point-of-care may provide opportunities to investigate real-world health outcomes among psoriasis patients. Our objective was to investigate patient-perceived treatment effectiveness, patterns of medication use (duration, switching, and/or discontinuation), healthcare resource utilization, and medication costs using real-world data from psoriasis patients.MethodsData for adults (≥18-years) with a dermatology provider-given diagnosis of psoriasis from 9/2014–9/2015 were obtained from dermatology practices using a widely used US dermatology-specific EHR containing over 500,000 psoriasis patients. Disease severity was captured by static physician’s global assessment and body surface area. Patient-perceived treatment effectiveness was assessed by a pre-defined question. Treatment switching and duration were documented. Reasons for discontinuations were assessed using pre-defined selections. Healthcare resource utilization was defined by visit frequency and complexity.ResultsFrom 82,621 patients with psoriasis during the study period, patient-perceived treatment effectiveness was investigated in 2200 patients. The proportion of patients reporting “strongly agree” when asked if their treatment was effective was highest for biologics (73%) and those reporting treatment adherence (55%). In 16,000 patients who received oral systemics and 21,087 patients who received biologics, median treatment duration was longer for those who received biologics (160 vs. 113 days, respectively). Treatment switching was less frequent among patients on systemic monotherapies compared to those on combination therapies. The most common reason for discontinuing biologics was loss of efficacy; the most common reason for discontinuing orals was side effects. In 28,754 patients, higher disease severity was associated with increased healthcare resource utilization (increased visit frequency and complexity). When compared between treatment groups (n = 10,454), healthcare resource utilization was highest for phototherapy. Annual medication costs were higher for biologics ($21,977) than oral systemics ($3413).ConclusionsReal-world research using a widely implemented dermatology EHR provided valuable insights on patient perceived treatment effectiveness, patterns of medication usage, healthcare resource utilization, and medication costs for psoriasis patients in the US. This study and others utilizing EHRs for real-world research may assist clinical and payer decisions regarding the management of psoriasis.Electronic supplementary materialThe online version of this article (10.1186/s12895-018-0072-2) contains supplementary material, which is available to authorized users.

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Novel approach to utilizing electronic health records for dermatologic research: Developing a multi-institutional federated data network for clinical and translational research in psoriasis and psoriatic arthritis

Cited by 5 publications

References 0 publications

Outcomes Research in Psoriasis and Psoriatic Arthritis Using Large Databases and Research Networks: A Report from the GRAPPA 2013 Annual Meeting

Outcomes Research in Psoriasis and Psoriatic Arthritis Using Large Databases and Research Networks: A Report from the GRAPPA 2013 Annual Meeting

BigMouth: a multi-institutional dental data repository

Real-world health outcomes in adults with moderate-to-severe psoriasis in the United States: a population study using electronic health records to examine patient-perceived treatment effectiveness, medication use, and healthcare resource utilization

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