Patient Sociotechnical Assemblages: The Distributed Cognition of Health Information Management

Personal health records (PHR) are shifting the capabilities and responsibilities of both patients and providers. Influenced by health IT, concepts like patient-centered care, meaningful use, and patient empowerment are commonplace in the healthcare system. As the popularity of personal health records increases, medical providers, healthcare organizations, and health information system stakeholders require a thorough understanding of how patients use these patient facing information portals in conjunction with other artifacts, objects, and practices to manage and maintain their health. Exploring health information management as a distributed sociotechnical assemblage is the conceptual approach of this research. A distributed cognition perspective lends insight to drawing boundaries and establishing connections of personal health information management practices in conjunction with PHR use. The Department of Veterans Affairs provides a unique setting to further understand PHR use and personal health information management practice through the observation of U.S. military veterans enrolled in the My HealtheVet PHR. This context and conceptual framework lead to the research questions for the proposed study: RQ1a: What are the personal health information management practices of veterans who use a personal health record? RQ1b: What health information management practices become distributed beyond the veteran patient? RQ2a: What health information management assemblages emerge from the distributed work of Veterans that use a personal health record? RQ2b: What are key functions of the health information management assemblages of veterans? Through the use of semi-structured in depth interviews, observations, and surveys, data were collected on 22 patients along with their primary care providers and caretakers. Results from a two cycle qualitative coding analysis and analytical cognitive mapping technique reveal bundles of practices for creating reminders, organizing information, and creating information for asking questions and working with primary care providers. Distributed practices emerged that detail the managing of medication, information that is socially distributed, and patient-provider communication through secure messaging. Three health information management assemblage components emerged from the analysis: health events and experiential information, information techniques, and technology and material practices. Each of these components is understood by the ways they become stabilized or destabilized. This research contributes to implications for the design of patient-focused personal health records and informs clinical practice of patient-centered care. The research also makes conceptual and empirical contributions to the practice of health information management and a patient-centered care model of healthcare delivery

User Interfaces for Patient-Centered Communication of Health Status and Care Progress

The recent trend toward patients participating in their own healthcare has opened up numerous opportunities for computing research. This dissertation focuses on how technology can foster this participation, through user interfaces to effectively communicate personal health status and care progress to hospital patients. I first characterize the design space for electronic information communication to patients through field studies conducted in multiple hospital settings. These studies utilize a combination of survey instruments, and low- and high-fidelity prototypes, including a document-editing prototype through which users can view and manage clinical data to automatically associate it with progress notes. The prototype, activeNotes, includes the first known techniques supporting clinical information requests directly within a document editor. A usage study with ICU physicians at New York-Presbyterian Hospital (NYP) substantiated our design and revealed how electronic information related to patient status and care progress is derived from a typical Electronic Health Record system. Insights gained from this study informed following studies to understand how to design abstracted, plain-language views suitable for patients. We gauged both patient and physician responses to information display prototypes deployed in patient rooms for a formative study exploring their design. Following my reports on this study, I discuss the design, development and pilot evaluations of a prototype Personal Health Record application providing live, abstracted clinical information for patients at NYP. The portal, evaluated by cardiothoracic surgery patients, is the first of its kind to allow patients to capture and monitor live data related to their care. Patient use of the portal influenced the subsequent design of tools to support users in making sense of online medication information. These tools, designed with nurses and pharmacists and evaluated by cardiothoracic surgery patients at NYP, were developed using topic modeling approaches and text analysis techniques. Embodied in a prototype called Remedy, they enable rapid filtering and comparison of medication-related search results, based on a number of website features and content topics. I conclude by discussing how findings from this series of studies can help shape the ongoing design and development of patient-centered technology

IUPUI Center for Cancer Population Analytics and Patient-Centered Informatics

poster abstractAbstract: More than 30,000 Indiana residents are diagnosed with cancer each year. Cancer is the second leading cause of death in the state, claiming more than 12,000 lives annually. More than $1 billion was spent in Indiana on direct costs of treating the cancer population in 2003. Indirect costs to cancer patients and their families are also of great importance. Cancer care coordination has the potential to reduce costs and improve quality in cancer care delivery. Coordination may occur both among (1) multiple cancer care providers caring for populations of cancer patients, and (2) between providers and individual patients with cancer The IUPUI Center for Cancer Population Analytics and Patient-Centered Informatics was established in 2013. The center’s mission is to develop team science that combines innovative health information technologies with rigorous health services research methods in order to create knowledge that will have an impact upon the health and health care of patients and populations with cancer in the state of Indiana and the U.S. The center’s goals are (1) to build collaborative, multidisciplinary scientific teams to create national leaders in the state of Indiana in the fields of cancer health services research and informatics, and (2) to perform top-tier national cancer health services research and “big data” analytics to improve the quality, efficiency, coordination, and outcomes of cancer care The Center Cores: To build our research portfolio, we have the following 2 main cores of activity: I. Cancer Population Analytics Core: Data sources from multiple health care organizations throughout central Indiana are being joined together to answer important clinical/epidemiologic questions regarding the quality of cancer care, and design population-based, system interventions to improve the lives of Indiana cancer patients. Further support has been leveraged for this work, namely, the IU Cancer Center has provided a pilot grant to link the Indiana state cancer registry with data from the Regenstrief Institute’s Indiana Network for Patient Care in order to study the utilization of high-cost imaging among cancer survivors. Furthermore, support from a Regenstrief/Merck collaboration will facilitate assessment of the quality of the data linkage at the level of both the patient and cancer case. II. Cancer Patient-Centered Informatics Core: Multiple platforms are being leveraged to develop and test patient-centered technologies to enable individuals to track health care received and communicate with providers. Utilizing OpenMRS, a personal health record (PHR) module was created for colorectal cancer patients including treatment summary information, evidence-based decision support regarding surveillance, and online communication tools. Additional development is being focused upon updating the user interface, creating patient social networks, and providing tools to support patient well-being. Support has also been obtained from the Walther Cancer Foundation to collect information about patient symptoms and from the Regenstrief/Merck collaboration to collect patient-reported outcome measures. Finally, an NIH proposal has been developed for the SUrvivorship Care Plan-PERsonal Health Record Intervention Trial (SUPER-IT), a randomized controlled trial designed to test the effect of this new technology upon both the quality of care received and patient-centered outcomes

The Electronic Health Record Scorecard: A Measure of Utilization and Communication Skills

As the adoption rate of electronic health records (EHRs) in the United States continues to grow, both providers and patients will need to adapt to the reality of a third actor being present during the visit encounter. The purpose of this project is to provide insight on “best” practice patterns for effective communication and efficient use of the EHR in the clinical practice setting. Through the development of a comprehensive scorecard, this project assessed current status of EHR use and communication skills among health care providers in various clinical practice settings. Anticipated benefits of this project are increased comfortability in interfacing with the EHR and increased satisfaction on the part of the provider as well as the patient. Serving as a benchmark, this assessment has the potential to help guide future health information technology development, training, and education for both students and health care providers

The organizational dynamics enabling patient portal impacts upon organizational performance and patient health: a qualitative study of Kaiser Permanente.

BackgroundPatient portals may lead to enhanced disease management, health plan retention, changes in channel utilization, and lower environmental waste. However, despite growing research on patient portals and their effects, our understanding of the organizational dynamics that explain how effects come about is limited.MethodsThis paper uses qualitative methods to advance our understanding of the organizational dynamics that influence the impact of a patient portal on organizational performance and patient health. The study setting is Kaiser Permanente, the world's largest not-for-profit integrated delivery system, which has been using a portal for over ten years. We interviewed eighteen physician leaders and executives particularly knowledgeable about the portal to learn about how they believe the patient portal works and what organizational factors affect its workings. Our analytical framework centered on two research questions. (1) How does the patient portal impact care delivery to produce the documented effects?; and (2) What are the important organizational factors that influence the patient portal's development?ResultsWe identify five ways in which the patient portal may impact care delivery to produce reported effects. First, the portal's ability to ease access to services improves some patients' satisfaction as well as changes the way patients seek care. Second, the transparency and activation of information enable some patients to better manage their care. Third, care management may also be improved through augmented patient-physician interaction. This augmented interaction may also increase the 'stickiness' of some patients to their providers. Forth, a similar effect may be triggered by a closer connection between Kaiser Permanente and patients, which may reduce the likelihood that patients will switch health plans. Finally, the portal may induce efficiencies in physician workflow and administrative tasks, stimulating certain operational savings and deeper involvement of patients in medical decisions. Moreover, our analysis illuminated seven organizational factors of particular importance to the portal's development--and thereby ability to impact care delivery: alignment with financial incentives, synergy with existing IT infrastructure and operations, physician-led governance, inclusive decision making and knowledge sharing, regional flexibility to implementation, continuous innovation, and emphasis on patient-centered design.ConclusionsThese findings show how organizational dynamics enable the patient portal to affect care delivery by summoning organization-wide support for and use of a portal that meets patient needs

Project HealthDesign: Rethinking the Power and Potential of Personal Health Records: Round One Final Report

Describes an initiative to develop prototypes for next-generation personal health record applications on a common platform focused on self-management for better health. Outlines grantees' prototypes for user-centered daily monitoring and lessons learned

Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study

Background: As a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors. Objective: The purpose of this study is to characterize the usefulness of a CRC PHR and survivorship care plan and to describe the usability of these technologies in a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and survivorship care plan specifically targeting CRC survivors. Methods: Twenty-two patients with CRC were recruited from surgery clinics of an academic medical center and Veterans Affairs hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor’s Personal Health Record (CRCS-PHR). Survey data were collected to characterize the usefulness of the CRCS-PHR and describe its usability in a population of CRC survivors. CRC survivors were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method. Results: CRC survivors perceived features related to their health care (ie, summary of cancer treatment history, follow-up care schedule, description of side effects, and list of community resources) to be more useful than communication features (ie, creating online relationships with family members or caregivers, communicating with doctor, and secure messages). CRC survivors typically described utilizing traditional channels (eg, via telephone or in person) to communicate with their health care provider. Participants had overall positive perceptions with respect to ease of use and overall satisfaction. Major challenges experienced by participants included barriers to system log-in, lack of computer literacy or experience, and difficulty entering their patient information. Conclusions: For CRC, survivors may find the greater value in a PHR’s medical content than the communication functions, which they have available elsewhere. These findings regarding the usefulness and usability of a PHR for the management of CRC survivorship provide valuable insights into how best to tailor these technologies to patients’ needs. These findings can inform future design and development of PHRs for purposes of both cancer and chronic disease management

Motivational Interviewing Impact on Cardiovascular Disease

abstract: Harm reduction in cardiovascular disease is a significant problem worldwide. Providers, families, and healthcare agencies are feeling the burdens imparted by these diseases. Not to mention missed days of work and caregiver strain, the losses are insurmountable. Motivational interviewing (MI) is gaining momentum as a method of stimulating change through intrinsic motivation by resolving ambivalence toward change (Ma, Zhou, Zhou, & Huang, 2014). If practitioners can find methods of educating the public in a culturally-appropriate and sensitive manner, and if they can work with community stakeholders to organize our resources to make them more accessible to the people, we may find that simple lifestyle changes can lead to risk reduction of cardiovascular diseases. By working with our community leaders and identifying barriers unique to each population, we can make positive impacts on a wide range of issues that markedly impact our healthcare systems

Building Medical Homes in State Medicaid and CHIP Programs

Presents strategies, best practices, and lessons learned from ten states' efforts to advance the medical home model of comprehensive and coordinated care in Medicaid and Children's Health Insurance Programs in order to improve quality and contain costs