A Description of Personal Health Information Management Work With a Spotlight on the Practices of Older Adults: Qualitative e-Delphi Study With Professional Organizers.

BACKGROUND: Personal health information (PHI) is created on behalf of and by health care consumers to support their care and wellness. Available tools designed to support PHI management (PHIM) remain insufficient. A comprehensive understanding of PHIM work is required, particularly for older adults, to offer more effective PHIM tools and support. OBJECTIVE: The primary objective of this study was to use the Patient Work System model to provide a holistic description of PHIM work from the perspective of professional organizers with experience assisting health care consumers, including older adults, in managing their PHI. A secondary objective was to examine how factors associated with 4 Patient Work System components (person, tasks, tools and technologies, and context) interact to support or compromise PHIM work performance. METHODS: A modified e-Delphi methodology was used to complete 3 web-based rounds of open-ended questions and obtain consensus among a panel of 16 experts in professional organizing. Data were collected between April and December 2017. The Patient Work System model was used as a coding schema and guided the interpretation of findings during the analysis. RESULTS: The PHIM work of adults who sought assistance focused on the tasks of acquiring, organizing, and storing 3 classifications of PHI (medical, financial, and reference) and then processing, reconciling, and storing the medical and financial classifications to tend to their health, health care, and health finances. We also found that the complexities of PHI and PHIM-related work often exceeded the abilities and willingness of those who sought assistance. A total of 6 factors contributed to the complexity of PHIM work. The misalignment of these factors was found to increase the PHIM workload, particularly for older adults. The life changes that often accompanied aging, coupled with obscure and fragmented health care provider- and insurer-generated PHI, created the need for much PHIM work. Acquiring and integrating obscure and fragmented PHI, detecting and reconciling PHI discrepancies, and protecting PHI held by health care consumers were among the most burdensome tasks, especially for older adults. Consequently, personal stakeholders (paid and unpaid) were called upon or voluntarily stepped in to assist with PHIM work. CONCLUSIONS: Streamlining and automating 2 of the most common and burdensome PHIM undertakings could drastically reduce health care consumers' PHIM workload: developing and maintaining accurate current and past health summaries and tracking medical bills and insurance claims to reconcile discrepancies. Other improvements that hold promise are the simplification and standardization of commonly used financial and medical PHI; standardization and automation of commonly used PHI acquisition interfaces; and provision of secure, Health Insurance Portability and Accountability Act (HIPAA)-certified PHI tools and technologies that control multiperson access for PHI stored by health care consumers in electronic and paper formats.

Personal Health Information Management Among Older Adults: Scoping Review.

BACKGROUND: Older adults face growing health care needs and could potentially benefit from personal health information management (PHIM) and PHIM technology. To ensure effective PHIM and to provide supportive tools, it is crucial to investigate the needs, challenges, processes, and tools used by this subpopulation. The literature on PHIM by older adults, however, remains scattered and has not provided a clear picture of what we know about the elements that play a role in older adults' PHIM. OBJECTIVE: The goal of our review was to provide a comprehensive overview of extant knowledge on PHIM by older adults, establish the status quo of research on this topic, and identify research gaps. METHODS: We carried out a scoping review of the literature from 1998 to 2020, which followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) framework. First, we executed a broad and structured search. We then carried out a qualitative analysis of papers pertinent to the topic taking into consideration the five elements of the patient work system as follows: (1) personal-level factors, (2) PHIM tasks, (3) tools used, (4) physical settings of PHIM activities, and (5) socio-organizational aspects. RESULTS: The review included 22 studies. Consolidated empirical evidence was related to all elements of the patient work system. Multiple personal factors affected PHIM. Various types of personal health information were managed (clinical, patient-generated, and general) and tools were used (electronic, paper-based, and others). Older adults' PHIM was intertwined with their surroundings, and various individuals participated. The largest body of evidence concerned personal factors, while findings regarding the physical environment of PHIM were scarce. Most research has thus far examined older adults as a single group, and scant attention has been paid to age subgroups. CONCLUSIONS: Opportunities for further PHIM studies remain across all elements of the patient work system in terms of empirical, design science, or review work.

Use of telemedicine to follow special needs children.

Two remote telemedicine clinics were established linked to a tertiary care center to improve access for special health care needs children (SHCNC). The remote clinics were established at Lamar University's School of Nursing (1996) and Stephen F. Austin University's School of Nursing (1997), and they were linked to the pediatric interdisciplinary team at the University of Texas Medical Branch. These clinics were evaluated to determine if the tertiary interdisciplinary team could effectively assess and plan interventions for SHCNC and to assess patient and caregivers satisfaction with this intervention. The interdisciplinary team and the patients and their families were highly satisfied with this arrangement.