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Item Erratum to: Providing Patients with Implantable Cardiac Device Data through a Personal Health Record: A Qualitative Study(Thieme Medical Publishers, 2017-10) Daley, Carly N.; Chen, Elizabeth M.; Roebuck, Amelia E.; Ghahari, Romisa Rohani; Sami, Areej F.; Skaggs, Cayla G.; Carpenter, Maria D.; Mirro, Michael J.; Toscos, Tammy R.; BioHealth Informatics, School of Informatics and ComputingItem Impact of electronic personal health record use on engagement and intermediate health outcomes among cardiac patients: a quasi-experimental study(Oxford University Press, 2016-01) Toscos, Tammy; Daley, Carly; Heral, Lisa; Doshi, Riddhi; Chen, Yu-Chieh; Eckert, George J.; Plant, Robert L.; Mirro, Michael J.; Biostatistics, School of Public HealthObjectives: To determine the impact of tethered personal health record (PHR) use on patient engagement and intermediate health outcomes among patients with coronary artery disease (CAD). Methods: Adult CAD patients (N = 200) were enrolled in this prospective, quasi-experimental observational study. Each patient received a PHR account and training on its use. PHRs were populated with information from patient electronic medical records, hosted by a Health Information Exchange. Intermediate health outcomes including blood pressure, body mass index, and hemoglobin A1c (HbA1c) were evaluated through electronic medical record review or laboratory tests. Trends in patient activation measure® (PAM) were determined through three surveys conducted at baseline, 6 and 12 months. Frequency of PHR use data was collected and used to classify participants into groups for analysis: Low, Active, and Super users. Results: There was no statistically significant improvement in patient engagement as measured by PAM scores during the study period. HbA1c levels improved significantly in the Active and Super user groups at 6 months; however, no other health outcome measures improved significantly. Higher PAM scores were associated with lower body mass index and lower HbA1c, but there was no association between changes in PAM scores and changes in health outcomes. Use of the PHR health diary increased significantly following PHR education offered at the 6-month study visit and an elective group refresher course. Conclusions: The study findings show that PHR use had minimal impact on intermediate health outcomes and no significant impact on patient engagement among CAD patients.Item A Novel Conceptual Architecture for Person-Centered Health Records(American Medical Informatics Association, 2017-02-10) Schleyer, Titus; King, Zachary; Miled, Zina Ben; Department of Medicine, IU School of MedicinePersonal health records available to patients today suffer from multiple limitations, such as information fragmentation, a one-size-fits-all approach and a focus on data gathered over time and by institution rather than health conditions. This makes it difficult for patients to effectively manage their health, for these data to be enriched with relevant information from external sources and for clinicians to support them in that endeavor. We propose a novel conceptual architecture for person-centered health record information systems that transcends many of these limitations and capitalizes on the emerging trend of socially-driven information systems. Our proposed personal health record system is personalized on demand to the conditions of each individual patient; organized to facilitate the tracking and review of the patient's conditions; and able to support patient-community interactions, thereby promoting community engagement in scientific studies, facilitating preventive medicine, and accelerating the translation of research findings.Item Providing Patients with Implantable Cardiac Device Data through a Personal Health Record: A Qualitative Study(Thieme, 2017-10) Daley, Carly N.; Chen, Elizabeth M.; Roebuck, Amelia E.; Ghahari, Romisa Rohani; Sami, Areej F.; Skaggs, Cayla G.; Carpenter, Maria D.; Mirro, Michael J.; Toscos, Tammy R.; BioHealth Informatics, School of Informatics and ComputingErratum to: Providing Patients with Implantable Cardiac Device Data through a Personal Health Record: A Qualitative Study. [Appl Clin Inform. 2017]Item Uses of Personal Health Records for Communication Among Colorectal Cancer Survivors, Caregivers, and Providers: Interview and Observational Study in a Human-Computer Interaction Laboratory(JMIR, 2022-01-25) Haggstrom, David A.; Carr, Thomas; Medicine, School of MedicineBackground: Personal health records (PHRs) may be useful for patient self-management and participation in communication with their caregivers and health care providers. As each potential participant's role is different, their perception of the best uses of a PHR may vary. Objective: The perspectives of patients, caregivers, and providers were all evaluated concurrently in relation to a PHR developed for colorectal cancer (CRC) survivors. Methods: We explored group perceptions of a CRC PHR prototype. Scenario-based testing across eight use cases, with semistructured follow-up interviews, was videotaped in a human-computer interaction laboratory with patients, caregivers, and health care providers. Providers included oncologists, gastroenterologists, and primary care physicians. Discrete observations underwent grounded theory visual affinity analysis to identify emergent themes. Results: Observations fell into three major themes: the network (who should be granted access to the PHR by the patient), functions (helpful activities the PHR enabled), and implementation (how to adopt the PHR into workflow). Patients wanted physician access to their PHR, as well as family member access, especially when they lived at a distance. All groups noted the added value of linking the PHR to an electronic health record, self-tracking, self-management, and secure messaging. Patients and caregivers also saw information in the PHR as a useful memory tool given their visits to multiple doctors. Providers had reservations about patients viewing raw data, which they were not prepared to interpret or might be inaccurate; patients and caregivers did not express any reservations about having access to more information. Patients saw PHR communication functions as a potential tool for relationship building. Patients and caregivers valued the journal as a tool for reflection and delivery of emotional support. Providers felt the PHR would facilitate patient-physician communication but worried that sharing journal access would make the doctor-patient relationship less professional and had reservations about the time burden of reviewing. Strategies suggested for efficient adoption into workflow included team delegation. Establishment of parameters for patient uses and provider responses was perceived as good standard practice. Conclusions: PHR perceptions differed by role, with providers seeing the PHR as informational, while patients and caregivers viewed the tool as more relational. Personal health records should be linked to electronic health records for ease of use. Tailoring access, content, and implementation of the PHR is essential. Technology changes have the potential to change the nature of the patient-physician relationship. Patients and providers should establish shared expectations about the optimal use of the PHR and explore how emerging patient-centered technologies can be successfully implemented in modern medical practice to improve the relational quality of care.