Alanna Kulchak Rahm, Ilene Ladd, Andrea N Burnett-Hartman, Mara M Epstein, Jan T Lowery, Christine Y Lu, Pamala A Pawloski, Ravi N Sharaf, Su-Ying Liang, Jessica Ezzell Hunter
{"title":"The Healthcare Systems Research Network (HCSRN) as an Environment for Dissemination and Implementation Research: A Case Study of Developing a Multi-Site Research Study in Precision Medicine.","authors":"Alanna Kulchak Rahm, Ilene Ladd, Andrea N Burnett-Hartman, Mara M Epstein, Jan T Lowery, Christine Y Lu, Pamala A Pawloski, Ravi N Sharaf, Su-Ying Liang, Jessica Ezzell Hunter","doi":"10.5334/egems.283","DOIUrl":"10.5334/egems.283","url":null,"abstract":"<p><strong>Context: </strong>In existence for nearly 25 years, the Healthcare Systems Research Network (HCSRN) is an established and sustainable network of health care systems that serves as a \"real world\" laboratory to enable the integration of research findings into practice. The objective of this paper is to demonstrate how the HCSRN serves as an ideal environment for studying dissemination and implementation of evidence-based practices into health care systems through the example of developing a multi-site study on the implementation of evidence-based precision medicine practices.</p><p><strong>Case description: </strong>The \"Implementing Universal Lynch Syndrome Screening (IMPULSS)\" study (NIH R01CA211723) involves seven HCSRN health care systems and two external health care systems. The IMPULSS study will describe and explain organizational variability around Lynch syndrome (LS) screening to identify which factors in different organizational contexts are important for successful implementation of LS screening programs and will create a toolkit to facilitate organizational decision making around implementation and improvement of precision medicine programs in health care systems.</p><p><strong>Major themes: </strong>The strengths of the HCSRN that facilitate D&I research include: 1) a culture of collaboration, 2) standardization of data and processes across systems, and 3) researchers embedded in diverse health care systems. We describe how these strengths contributed to developing the IMPULSS study.</p><p><strong>Conclusion: </strong>Given the importance of conducting research in real world settings to improve patient outcomes, the unique strengths of the HCSRN are of vital importance. The IMPULSS study is one case example of how the strengths of the HCSRN make it an excellent environment for research on implementing evidence-based precision medicine practices in health care systems.</p>","PeriodicalId":72880,"journal":{"name":"EGEMS (Washington, DC)","volume":"7 1","pages":"16"},"PeriodicalIF":0.0,"publicationDate":"2019-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6460496/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37151221","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
JoAnn M Sperl-Hillen, Rebecca C Rossom, Elyse O Kharbanda, Rachel Gold, Erik D Geissal, Thomas E Elliott, Jay R Desai, D Brad Rindal, Daniel M Saman, Stephen C Waring, Karen L Margolis, Patrick J O'Connor
{"title":"Priorities Wizard: Multisite Web-Based Primary Care Clinical Decision Support Improved Chronic Care Outcomes with High Use Rates and High Clinician Satisfaction Rates.","authors":"JoAnn M Sperl-Hillen, Rebecca C Rossom, Elyse O Kharbanda, Rachel Gold, Erik D Geissal, Thomas E Elliott, Jay R Desai, D Brad Rindal, Daniel M Saman, Stephen C Waring, Karen L Margolis, Patrick J O'Connor","doi":"10.5334/egems.284","DOIUrl":"10.5334/egems.284","url":null,"abstract":"<p><strong>Introduction: </strong>Priorities Wizard is an electronic health record-linked, web-based clinical decision support (CDS) system designed and implemented at multiple Health Care Systems Research Network (HCSRN) sites to support high quality outpatient chronic disease and preventive care. The CDS system (a) identifies patients who could substantially benefit from evidence-based actions; (b) presents prioritized evidence-based treatment options to both patient and clinician at the point of care; and (c) facilitates efficient ordering of recommended medications, referrals or procedures.</p><p><strong>Methods: </strong>The CDS system extracts relevant data from electronic health records (EHRs), processes the data using Web-based clinical decision support algorithms, and displays the CDS output seamlessly on the EHR screen for use by the clinician and patient. Through a series of National Institutes of Health-funded projects led by HealthPartners Institute and the HealthPartners Center for Chronic Care Innovation and HCSRN partners, Priorities Wizard has been evaluated in cluster-randomized trials and expanded to include over 20 clinical domains.</p><p><strong>Results: </strong>Cluster-randomized trials show that this CDS system significantly improved glucose and blood pressure control in diabetes patients, reduced 10-year cardiovascular (CV) risk in high-CV risk adults without diabetes, improved management of smoking in dental patients, and improved high blood pressure identification and management in adolescents. CDS output was used at 71-77 percent of targeted visits, 85-98 percent of clinicians were satisfied with the CDS system, and 94 percent reported they would recommend it to colleagues.</p><p><strong>Conclusions: </strong>Recently developed EHR-linked, Web-based CDS systems have significantly improved chronic disease care outcomes and have high use rates and primary care clinician satisfaction.</p>","PeriodicalId":72880,"journal":{"name":"EGEMS (Washington, DC)","volume":"7 1","pages":"9"},"PeriodicalIF":0.0,"publicationDate":"2019-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6450247/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37143345","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The Promise of Pragmatic Clinical Trials Embedded in Learning Health Systems.","authors":"Leah Tuzzio, Eric B Larson","doi":"10.5334/egems.285","DOIUrl":"10.5334/egems.285","url":null,"abstract":"<p><p>This commentary describes the need for a different context to clinical research that could speed the discovery and implementation of evidence-based advancements to health care delivery. Pragmatic clinical trials (PCTs) are a promising type of trial conducted within real-world health care delivery systems like organizations within the Health Care Systems Research Network, that embrace research as part of their culture of continuous learning and improvement. In these learning health systems (LHSs) clinical practice influences research and vice versa. A goal of LHSs is to operationalize evidence generated by research, particularly PCTs, into improvements that are sustained after a trial ends. PCTs that demonstrate value to health systems and foster implementation could reduce delays in translating research into practice.</p>","PeriodicalId":72880,"journal":{"name":"EGEMS (Washington, DC)","volume":"7 1","pages":"10"},"PeriodicalIF":0.0,"publicationDate":"2019-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6450240/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37143346","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Gregory E Simon, Susan M Shortreed, R Yates Coley, Robert B Penfold, Rebecca C Rossom, Beth E Waitzfelder, Katherine Sanchez, Frances L Lynch
{"title":"Assessing and Minimizing Re-identification Risk in Research Data Derived from Health Care Records.","authors":"Gregory E Simon, Susan M Shortreed, R Yates Coley, Robert B Penfold, Rebecca C Rossom, Beth E Waitzfelder, Katherine Sanchez, Frances L Lynch","doi":"10.5334/egems.270","DOIUrl":"https://doi.org/10.5334/egems.270","url":null,"abstract":"<p><strong>Background: </strong>Sharing of research data derived from health system records supports the rigor and reproducibility of primary research and can accelerate research progress through secondary use. But public sharing of such data can create risk of re-identifying individuals, exposing sensitive health information.</p><p><strong>Method: </strong>We describe a framework for assessing re-identification risk that includes: identifying data elements in a research dataset that overlap with external data sources, identifying small classes of records defined by unique combinations of those data elements, and considering the pattern of population overlap between the research dataset and an external source. We also describe alternative strategies for mitigating risk when the external data source can or cannot be directly examined.</p><p><strong>Results: </strong>We illustrate this framework using the example of a large database used to develop and validate models predicting suicidal behavior after an outpatient visit. We identify elements in the research dataset that might create risk and propose a specific risk mitigation strategy: deleting indicators for health system (a proxy for state of residence) and visit year.</p><p><strong>Discussion: </strong>Researchers holding health system data must balance the public health value of data sharing against the duty to protect the privacy of health system members. Specific steps can provide a useful estimate of re-identification risk and point to effective risk mitigation strategies.</p>","PeriodicalId":72880,"journal":{"name":"EGEMS (Washington, DC)","volume":"7 1","pages":"6"},"PeriodicalIF":0.0,"publicationDate":"2019-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6450246/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37317725","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Onchee Yu, Susan D Reed, Renate Schulze-Rath, Jane Grafton, Kelly Hansen, Delia Scholes
{"title":"Identification of Incident Uterine Fibroids Using Electronic Medical Record Data.","authors":"Onchee Yu, Susan D Reed, Renate Schulze-Rath, Jane Grafton, Kelly Hansen, Delia Scholes","doi":"10.5334/egems.264","DOIUrl":"https://doi.org/10.5334/egems.264","url":null,"abstract":"<p><strong>Introduction: </strong>Uterine fibroids are the most common benign tumors of the uterus and are associated with considerable morbidity. Diagnosis codes have been used to identify fibroid cases, but their accuracy, especially for incident cases, is uncertain.</p><p><strong>Methods: </strong>We performed medical record review on a random sample of 617 women who received a fibroid diagnosis during 2012-2014 to assess diagnostic accuracy for incident fibroids. We developed 2 algorithms aimed at improving incident case-finding using classification and regression tree analysis that incorporated additional electronic health care data on demographics, symptoms, treatment, imaging, health care utilization, comorbidities and medication. Algorithm performance was assessed using medical record as gold standard.</p><p><strong>Results: </strong>Medical record review confirmed 482 fibroid cases as incident, resulting a 78 percent positive predictive value (PPV) for incident cases based on diagnosis codes alone. Incorporating additional electronic data, the first algorithm classified 395 women with a pelvic ultrasound on diagnosis date but none before as incident cases. Of these, 344 were correctly classified, yielding an 87 percent PPV, 71 percent sensitivity, and 62 percent specificity. A second algorithm built on the first algorithm and further classified women based on a fibroid diagnosis code of 218.9 in 2 years after incident diagnosis and lower body mass index; yielded 93 percent PPV, 53 percent sensitivity, and 85 percent specificity.</p><p><strong>Conclusions: </strong>Compared to diagnosis codes alone, our algorithms using fibroid diagnosis codes and additional electronic data improved identification of incident cases with higher PPV, and high sensitivity or specificity to meet different aims of future studies seeking to identify incident fibroids from electronic data.</p>","PeriodicalId":72880,"journal":{"name":"EGEMS (Washington, DC)","volume":"7 1","pages":"5"},"PeriodicalIF":0.0,"publicationDate":"2019-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6450248/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37317724","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
V Paul Doria-Rose, Robert T Greenlee, Diana S M Buist, Diana L Miglioretti, Douglas A Corley, Jeffrey S Brown, Heather A Clancy, Leah Tuzzio, Lisa M Moy, Mark C Hornbrook, Martin L Brown, Debra P Ritzwoller, Lawrence H Kushi, Sarah M Greene
{"title":"Collaborating on Data, Science, and Infrastructure: The 20-Year Journey of the Cancer Research Network.","authors":"V Paul Doria-Rose, Robert T Greenlee, Diana S M Buist, Diana L Miglioretti, Douglas A Corley, Jeffrey S Brown, Heather A Clancy, Leah Tuzzio, Lisa M Moy, Mark C Hornbrook, Martin L Brown, Debra P Ritzwoller, Lawrence H Kushi, Sarah M Greene","doi":"10.5334/egems.273","DOIUrl":"10.5334/egems.273","url":null,"abstract":"<p><p>The Cancer Research Network (CRN) is a consortium of 12 research groups, each affiliated with a nonprofit integrated health care delivery system, that was first funded in 1998. The overall goal of the CRN is to support and facilitate collaborative cancer research within its component delivery systems. This paper describes the CRN's 20-year experience and evolution. The network combined its members' scientific capabilities and data resources to create an infrastructure that has ultimately supported over 275 projects. Insights about the strengths and limitations of electronic health data for research, approaches to optimizing multidisciplinary collaboration, and the role of a health services research infrastructure to complement traditional clinical trials and large observational datasets are described, along with recommendations for other research consortia.</p>","PeriodicalId":72880,"journal":{"name":"EGEMS (Washington, DC)","volume":"7 1","pages":"7"},"PeriodicalIF":0.0,"publicationDate":"2019-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6450242/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37317726","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sanchita Sengupta, Don Bachman, Reesa Laws, Gwyn Saylor, Jenny Staab, Daniel Vaughn, Qing Zhou, Alan Bauck
{"title":"Data Quality Assessment and Multi-Organizational Reporting: Tools to Enhance Network Knowledge.","authors":"Sanchita Sengupta, Don Bachman, Reesa Laws, Gwyn Saylor, Jenny Staab, Daniel Vaughn, Qing Zhou, Alan Bauck","doi":"10.5334/egems.280","DOIUrl":"https://doi.org/10.5334/egems.280","url":null,"abstract":"<p><strong>Objective: </strong>Multi-organizational research requires a multi-organizational data quality assessment (DQA) process that combines and compares data across participating organizations. We demonstrate how such a DQA approach complements traditional checks of internal reliability and validity by allowing for assessments of data consistency and the evaluation of data patterns in the absence of an external \"gold standard.\"</p><p><strong>Methods: </strong>We describe the DQA process employed by the Data Coordinating Center (DCC) for Kaiser Permanente's (KP) Center for Effectiveness and Safety Research (CESR). We emphasize the CESR DQA reporting system that compares data summaries from the eight KP organizations in a consistent, standardized manner.</p><p><strong>Results: </strong>We provide examples of multi-organization comparisons from DQA to confirm expectations about different aspects of data quality. These include: 1) comparison of direct data extraction from the electronic health records (EHR) and 2) comparison of non-EHR data from disparate sources.</p><p><strong>Discussion: </strong>The CESR DCC has developed codes and procedures for efficiently implementing and reporting DQA. The CESR DCC approach is to 1) distribute DQA tools to empower data managers at each organization to assess their data quality at any time, 2) summarize and disseminate findings to address data shortfalls or document idiosyncrasies, and 3) engage data managers and end-users in an exchange of knowledge about the quality and its fitness for use.</p><p><strong>Conclusion: </strong>The KP CESR DQA model is applicable to networks hoping to improve data quality. The multi-organizational reporting system promotes transparency of DQA, adds to network knowledge about data quality, and informs research.</p>","PeriodicalId":72880,"journal":{"name":"EGEMS (Washington, DC)","volume":"7 1","pages":"8"},"PeriodicalIF":0.0,"publicationDate":"2019-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6450241/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37143344","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Improving Health Care with Advanced Analytics: Practical Considerations.","authors":"Jose Benuzillo, Lucy A Savitz, Scott Evans","doi":"10.5334/egems.276","DOIUrl":"https://doi.org/10.5334/egems.276","url":null,"abstract":"<p><p>Artificial intelligence (AI) is becoming ubiquitous in health care, largely through machine learning and predictive analytics applications. Recent applications of AI to common health care scenarios, such as screening and diagnosing, have fueled optimism about the use of advanced analytics to improve care. Careful and objective considerations need to be made before implementing an advanced analytics solution. Critical evaluation before, during, and after its implementation will ensure safe care, good outcomes, and the elimination of waste. In this commentary we offer basic practical considerations for developing, implementing, and evaluating such solutions based on many years of experience.</p>","PeriodicalId":72880,"journal":{"name":"EGEMS (Washington, DC)","volume":"7 1","pages":"3"},"PeriodicalIF":0.0,"publicationDate":"2019-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6437691/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37112158","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tracy A Lieu, Lisa J Herrinton, Dimitri E Buzkov, Liyan Liu, Deborah Lyons, Romain Neugebauer, Tami Needham, Daniel Ng, Stephanie Prausnitz, Kam Stewart, Stephen K Van Den Eeden, David M Baer
{"title":"Developing a Prognostic Information System for Personalized Care in Real Time.","authors":"Tracy A Lieu, Lisa J Herrinton, Dimitri E Buzkov, Liyan Liu, Deborah Lyons, Romain Neugebauer, Tami Needham, Daniel Ng, Stephanie Prausnitz, Kam Stewart, Stephen K Van Den Eeden, David M Baer","doi":"10.5334/egems.266","DOIUrl":"https://doi.org/10.5334/egems.266","url":null,"abstract":"<p><strong>Context: </strong>Electronic medical records hold promise to transform clinical practice. However, technological and other barriers may preclude using them to guide care in real time. We used the Virtual Data Warehouse (VDW) to develop a tool that enables physicians to generate real-time, personalized prognostic information about survival after cancer.</p><p><strong>Case description: </strong>Patients with cancer often ask their oncologists, \"Have you ever seen a patient like me?\" To help oncologists answer this question, we developed a prototype Prognostic Information System (PRISM), a web-based tool that gathers data about the index patient from Kaiser Permanente's clinical information systems, selects a historical cohort of similar patients, and displays the survival curve of the similar patients relative to key points in their treatment course.</p><p><strong>Findings and major themes: </strong>The prototype was developed by a multidisciplinary team with expertise in oncology, research, and technology. We have completed two rounds of user testing and refinement. Successful development rested on: (1) executive support and a clinical champion; (2) collaboration among experts from multiple disciplines; (3) starting with simple cases rather than ambitious ones; (4) extensive research experience with the Virtual Data Warehouse, related databases, and an existing query tool; and (5) following agile software development principles, especially iterative user testing.</p><p><strong>Conclusion: </strong>Clinical data stored in health care systems' electronic medical records can be used to personalize clinical care in real time. Development of prognostic information systems can be accelerated by collaborations among researchers, technology specialists, and clinicians and by use of existing technology like the Virtual Data Warehouse.</p>","PeriodicalId":72880,"journal":{"name":"EGEMS (Washington, DC)","volume":"7 1","pages":"2"},"PeriodicalIF":0.0,"publicationDate":"2019-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6437692/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37112157","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Learning to Share Health Care Data: A Brief Timeline of Influential Common Data Models and Distributed Health Data Networks in U.S. Health Care Research.","authors":"John Weeks, Roy Pardee","doi":"10.5334/egems.279","DOIUrl":"https://doi.org/10.5334/egems.279","url":null,"abstract":"<p><p>The last twenty years of health care research has seen a steady stream of common health care data models implemented for multi-organization research. Each model offers a uniform interface on data from the diverse organizations that implement them, enabling the sharing of research tools and data. While the groups designing the models have had various needs and aims, and the data available has changed significantly in this time, there are nevertheless striking similarities between them. This paper traces the evolution of common data models, describing their similarities and points of departure. We believe the history of this work should be understood and preserved. The work has empowered collaborative research across competing organizations and brought together researchers from clinical practice, universities and research institutes around the planet. Understanding the eco-system of data models designed for collaborative research allows readers to evaluate where we have been, where we are going as a field, and to evaluate the utility of different models to their own work.</p>","PeriodicalId":72880,"journal":{"name":"EGEMS (Washington, DC)","volume":"7 1","pages":"4"},"PeriodicalIF":0.0,"publicationDate":"2019-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6437693/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37112159","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}