Uses of Personal Health Records for Communication Among Colorectal Cancer Survivors, Caregivers, and Providers: Interview and Observational Study in a Human-Computer Interaction Laboratory

Abstract

Background 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.

People with long-term conditions sharing personal health data via digital health technologies: A scoping review to inform design

“…The sub-themes Engagement with Data for Self-Reflection [ 38 – 40 , 44 ] and Supporting Individual Self-Management [ 39 , 43 , 44 ] noted intentions that benefit individuals who share their data. After data is shared through an app, users are able to engage with their personally generated health data to reflect on symptoms and experiences of LTHCs.…”

“…“One patient said , “It would be nice to be able to keep up with how your treatment’s going , kind of knowing if you’re… getting better… A lot of times when you have Cancer you always have a question mark over your head–where am I?”” [ 43 ]…”

“…Design features to inspire trust . Two publications [ 43 , 46 ] reported that features to support Mutual Disclosure enhanced trust. Users from one publication recommended that digital health technologies provide a space to share qualitative personally generated health data with peers so that they may compare and contrast personal experiences.…”

Impact of a Personal Health Record Intervention Upon Surveillance Among Colorectal Cancer Survivors: Feasibility Study

“…Product development included the application of established usability methods [32]. Stakeholders (consisting of patients, caregivers, and health care providers) were asked to participate in scenario-based evaluations with direct observation and debriefing interviews to gather data on user performance and preferences as described elsewhere [33]. Changes were not made in the web-based design until data from at least 4-6 stakeholders had been collected; consistent with previous work by Nielsen et al [34], a total of 17 stakeholders participated in data collection.…”

Extracting Medical Information From Free-Text and Unstructured Patient-Generated Health Data Using Natural Language Processing Methods: Feasibility Study With Real-world Data

“…However, the patient experience, health events, medications, and symptoms captured in personal notebooks or devices are expected to be communicated verbally or written periodically, such as, during clinical visits. Given the limited time and ability to read and communicate patient notes, this information could be underused and create an additional burden [ 10 ]. Integrating PGHD into electronic health record systems is an acknowledged contribution, as it can create a more comprehensive view of health conditions and eventually inform shared decision-making [ 11 ].…”