Research Interests: Toll and Health affairs
The provision of patient-centered care requires a health care environment that fosters engagement between patients and their health care team. One way to encourage patient-centered care is to incorporate patient-reported outcomes into... more
The provision of patient-centered care requires a health care environment that fosters engagement between patients and their health care team. One way to encourage patient-centered care is to incorporate patient-reported outcomes into clinical settings. Collecting these outcomes in routine care ensures that important information only the patient can provide is captured. This provides insights into patients’ experiences of symptoms, quality of life, and functioning; values and preferences; and goals for health care. Previously embraced in the research realm, patient-reported outcomes have started to play a role in successful shared decision making, which can enhance the safe and effective delivery of health care. We examine the opportunities for using patient-reported outcomes to enhance care delivery and outcomes as health care information needs and technology platforms change. We highlight emerging practices in which patient-reported outcomes provide value to patients and clinician...
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This brief examines the rationale for engaging patients and consumers in health care research, and discusses several opportunities and challenges based on the experiences of several efforts to leverage electronic clinical data (ECD) for... more
This brief examines the rationale for engaging patients and consumers in health care research, and discusses several opportunities and challenges based on the experiences of several efforts to leverage electronic clinical data (ECD) for comparative effectiveness research (CER), patient centered outcomes research (PCOR), and quality improvement (QI). It also identifies a number of challenges to meaningful engagement of patients and
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This paper reports changes in job-based health insurance from spring 2002 to spring 2003. The cost of health insurance rose 13.9 percent, the highest rate of increase since 1990. Employers required larger contributions from employees for... more
This paper reports changes in job-based health insurance from spring 2002 to spring 2003. The cost of health insurance rose 13.9 percent, the highest rate of increase since 1990. Employers required larger contributions from employees for the monthly cost of health insurance. Separate copayments and deductibles for hospital services have be- come commonplace, and provider networks have broadened. There was
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The Electronic Data Methods (EDM) Forum brings together perspectives from the Prospective Outcome Systems using Patient-specific Electronic data to Compare Tests and therapies (PROSPECT) studies, the Scalable Distributed Research... more
The Electronic Data Methods (EDM) Forum brings together perspectives from the Prospective Outcome Systems using Patient-specific Electronic data to Compare Tests and therapies (PROSPECT) studies, the Scalable Distributed Research Networks, and the Enhanced Registries projects. This paper discusses challenges faced by the research teams as part of their efforts to develop electronic clinical data (ECD) infrastructure to support comparative effectiveness research (CER). The findings reflect a set of opportunities for transdisciplinary learning, and will ideally enhance the transparency and generalizability of CER using ECD. Findings are based on 6 exploratory site visits conducted under naturalistic inquiry in the spring of 2011. Themes, challenges, and innovations were identified in the visit summaries through coding, keyword searches, and review for complex concepts. : The identified overarching challenges and emerging opportunities include: the substantial level of effort to establ...
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AcademyHealth convened the Electronic Data Methods (EDM) Forum to collect, synthesize, and share lessons from eleven projects that are building infrastructure and using electronic clinical data for comparative effectiveness research (CER)... more
AcademyHealth convened the Electronic Data Methods (EDM) Forum to collect, synthesize, and share lessons from eleven projects that are building infrastructure and using electronic clinical data for comparative effectiveness research (CER) and patient-centered outcomes research (PCOR). This paper provides a brief review of participating projects and provides a framework of common challenges. EDM Forum staff conducted a text review of relevant grant programs' funding opportunity announcements; projects' research plans; and available information on projects' websites. Additional information was obtained from presentations provided by each project; phone calls with project principal investigators, affiliated partners, and staff from the Agency for Healthcare Research and Quality (AHRQ); and six site visits. Projects participating in the EDM Forum are building infrastructure and developing innovative strategies to address a set of methodological, and data and informatics challenges, here identified in a common framework. The eleven networks represent more than 20 states and include a range of partnership models. Projects vary substantially in size, from 11,000 to more than 7.5 million individuals. Nearly all of the AHRQ priority populations and conditions are addressed. In partnership with the projects, the EDM Forum is focused on identifying and sharing lessons learned to advance the national dialogue on the use of electronic clinical data to conduct CER and PCOR. These efforts have the shared goal of addressing challenges in traditional research studies and data sources, and aim to build infrastructure and generate evidence to support a learning health care system that can improve patient outcomes.
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This chapter is about the transformational ways that information and communication technologies enable people to make personal decisions about their health and health care. We will describe some key contributing influences and future... more
This chapter is about the transformational ways that information and communication technologies enable people to make personal decisions about their health and health care. We will describe some key contributing influences and future implications of engaged consumers using digital technologies to improve their health and health care experiences, particularly their impact on healthcare delivery systems and treatment decisions. Throughout the chapter, we use the term digital health to refer to the technology industry that produces and uses electronic information and communications technologies and tools—such as web portals, mobile phones, sensors, and online social networks—that deliver services and help people manage their personal health and wellness. Among all of the terms describing parts of the industry—mobile health, telehealth, and connected health—we use the term consumer informatics because it describes the multidisciplinary fields that study personal needs and preferences about health information, develop evidence-based ways to tailor and personalize information, and look for ways to make information more accessible and usable across platforms and settings. Our intention is to provide a perspective that acknowledges implicit biases embedded within healthcare systems and seeks to democratize health information sharing across provider–consumer relationships.
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This Users' Guide will facilitate integration of patient-reported outcomes (PROs) in the electronic health record (EHR), enabling use of PRO data for multiple clinical, research, and administrative applications, and thereby promoting... more
This Users' Guide will facilitate integration of patient-reported outcomes (PROs) in the electronic health record (EHR), enabling use of PRO data for multiple clinical, research, and administrative applications, and thereby promoting patient-centered care.
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Health care payers (self-insured employers, insurance companies, state Medicaid agencies, etc.) are increasingly playing a role as thoughtful purchasers of health care. In these new value-based purchasing (VBP) initiatives, the focus is... more
Health care payers (self-insured employers, insurance companies, state Medicaid agencies, etc.) are increasingly playing a role as thoughtful purchasers of health care. In these new value-based purchasing (VBP) initiatives, the focus is on paying for value rather than volume of services, an endeavor necessitating robust health information technology (IT). Successful efforts to implement VBP methodologies, from pay for performance to global budgets, entail a coevolution of technology; practice change designed to achieve benchmarks; and ongoing improvement against strategic quality measures. Ideally, this integrated approach to health system redesign will align technology, workflow, and quality with the goal of improving health outcomes. A key goal of VBP is for payers and purchasers to balance provider incentives and accountability in a way that supports patient-centered care and consumer engagement. Involving consumers (e.g., beneficiaries, patients, and caregivers) in the design and implementation of health IT is one important tactic to ensure the tools and programs that are developed are responsive to consumer’s needs. Promising future directions include efforts to incorporate social determinants of health into care and VBP, and developing a broader perspective on whole-person care. Both are only possible with robust consumer-facing health IT. The ultimate goal for policy and practice is to engage consumers and patients the design and implementation of health IT systems and VBP programs that promote health and well-being.
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Research Interests: Graduate Education, Health Informatics, Medical Education, Accreditation, Public Health, and 14 moreHealth Services Research, Health Administration, Medicine, Nursing Research, Library and Information Studies, Text Analysis, Learning Object, Core Competencies, Public health systems and services research, Professional Competence, Core Competency, Graduate Education of Geography, Learning Methods, and Training Program
This Learning Health System Model/Framework is brought to you for free and open access by the the EDM Forum Products and Events at EDM Forum Community. It has been peer-reviewed and accepted for publication in eGEMs (Generating Evidence &... more
This Learning Health System Model/Framework is brought to you for free and open access by the the EDM Forum Products and Events at EDM Forum Community. It has been peer-reviewed and accepted for publication in eGEMs (Generating Evidence & Methods to improve patient outcomes). The Electronic Data Methods (EDM) Forum is supported by the Agency for Healthcare Research and Quality (AHRQ), Grant 1U18HS022789-01. eGEMs publications do not reflect the official views of AHRQ or the United States Department of Health and Human Services.
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There is an emergent and intensive dialogue in the United States with regard to the accessibility, reproducibility, and rigor of health research. This discussion is also closely aligned with the need to identify sustainable ways to expand... more
There is an emergent and intensive dialogue in the United States with regard to the accessibility, reproducibility, and rigor of health research. This discussion is also closely aligned with the need to identify sustainable ways to expand the national research enterprise and to generate actionable results that can be applied to improve the nation's health. The principles and practices of Open Science offer a promising path to address both goals by facilitating (1) increased transparency of data and methods, which promotes research reproducibility and rigor; and (2) cumulative efficiencies wherein research tools and the output of research are combined to accelerate the delivery of new knowledge in proximal domains, thereby resulting in greater productivity and a reduction in redundant research investments. AcademyHealth's Electronic Data Methods (EDM) Forum implemented a proof-of-concept open science platform for health research called the Collaborative Informatics Environmen...
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AcademyHealth's Delivery System Science Fellowship (DSSF) provides a paid postdoctoral pragmatic learning experience to build capacity within learning healthcare systems to conduct research in applied settings. The fellowship provides... more
AcademyHealth's Delivery System Science Fellowship (DSSF) provides a paid postdoctoral pragmatic learning experience to build capacity within learning healthcare systems to conduct research in applied settings. The fellowship provides hands-on training and professional leadership opportunities for researchers. Since its inception in 2012, the program has grown rapidly, with 16 health systems participating in the DSSF to date. In addition to specific projects conducted within health systems (and numerous publications associated with those initiatives), the DSSF has made several broader contributions to the field, including defining delivery system science, identifying a set of training objectives for researchers working in delivery systems, and developing a national collaborative network of care delivery organizations, operational leaders, and trainees. The DSSF is one promising approach to support higher-value care by promoting continuous learning and improvement in health systems.
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"Open science" includes a variety of approaches to facilitate greater access to data and the information produced by processes of scientific inquiry. Recently, the health sciences community has been... more
"Open science" includes a variety of approaches to facilitate greater access to data and the information produced by processes of scientific inquiry. Recently, the health sciences community has been grappling with the issue of potential pathways and models to achieve the goals of open science-namely, to create and rapidly share reproducible health research. eGEMs' continued dedication to and milestones regarding the publication of innovative, useful, and timely research to help contribute to the push towards open science is discussed, as well as the EDM Forum's new data sharing platform, CIELO. Although strides have been made, there is still more work to be done to help health sciences community truly embrace open science.
Matching the supply and demand of evidence requires an understanding of when more evidence is needed, as well as the type of evidence that will meet this need. This article describes efforts to develop and refine a decision-making... more
Matching the supply and demand of evidence requires an understanding of when more evidence is needed, as well as the type of evidence that will meet this need. This article describes efforts to develop and refine a decision-making framework that considers payers' perspectives on the utility of evidence generated by different types of research methods, including real-world evidence. Conceptual framework development with subsequent testing during a roundtable dialogue. The framework development process included a literature scan to identify existing frameworks and relevant articles on payer decision making. The framework was refined during a stand-alone roundtable in December 2013 hosted by the research team, which included representatives from public and private payers, pharmacy benefit management, the life sciences industry, and researchers. The roundtable discussion also included an application of the framework to 3 case studies. Application of the framework to the clinical sce...
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The American Recovery and Reinvestment Act (ARRA) of 2009 made a substantial new investment to build capacity for the use of electronic clinical data (e.g., distributed data networks or patient registries) for QI and research. ARRA-funded... more
The American Recovery and Reinvestment Act (ARRA) of 2009 made a substantial new investment to build capacity for the use of electronic clinical data (e.g., distributed data networks or patient registries) for QI and research. ARRA-funded infrastructure awards focus on developing data, methods, training, and governance that is sustainable, flexible, and extensible over time. This brief examines the current requirements and approaches to building electronic data infrastructure, which is important when considering the mechanisms to ensure the sustainability of evidence generation in a learning health system.
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The panel addresses the urgent need to ensure that comparative effectiveness research (CER) findings derived from diverse and distributed data sources are based on credible, high-quality data; and that the methods used to assess and... more
The panel addresses the urgent need to ensure that comparative effectiveness research (CER) findings derived from diverse and distributed data sources are based on credible, high-quality data; and that the methods used to assess and report data quality are consistent, comprehensive, and available to data consumers. The panel consists of representatives from four teams leveraging electronic clinical data for CER, patient centered outcomes research (PCOR), and quality improvement (QI) and seeks to change the current paradigm where data quality assessment (DQA) is performed “behind the scenes” using one-off project specific methods. The panelists will present their process of harmonizing existing models for describing and measuring clinical data quality and will describe a comprehensive integrated framework for assessing and reporting DQA findings. The collaborative project is supported by the Electronic Data Methods (EDM) Forum, a three-year grant from the Agency for Healthcare Resear...
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Multi-institutional research and quality improvement (QI) projects using electronic clinical data (ECD) hold great promise for improving quality of care and patient outcomes but typically require significant infrastructure investments... more
Multi-institutional research and quality improvement (QI) projects using electronic clinical data (ECD) hold great promise for improving quality of care and patient outcomes but typically require significant infrastructure investments both to initiate and maintain the project over its duration. Consequently, it is important for these projects to think holistically about sustainability to ensure their long-term success. Four "pillars" of sustainability are discussed based on the experiences of EDM Forum grantees and other research and QI networks. These include trust and value, governance, management, and financial and administrative support. Two "foundational considerations," adaptive capacity and policy levers, are also discussed.
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The Electronic Data Methods (EDM) Forum announces the launch of eGEMs (Generating Evidence and Methods to improve patient outcomes), a new, free, open access, peer-reviewed e-publication. eGEMs aims to disseminate innovative ideas about... more
The Electronic Data Methods (EDM) Forum announces the launch of eGEMs (Generating Evidence and Methods to improve patient outcomes), a new, free, open access, peer-reviewed e-publication. eGEMs aims to disseminate innovative ideas about how electronic clinical data (ECD) can be leveraged in comparative effectiveness research (CER), patient-centered outcomes research (PCOR) and quality improvement (QI). eGEMs seeks submissions in four main topic areas: analytic methods, clinical informatics, governance, and the learning health system. The goal of eGEMs is ultimately to promote dialogue and the sharing of ideas between researchers and other stakeholders in a credible and timely way, extending the efforts of the EDM Forum.