JMIR Publications

ABSTRACT

Background:

Personal health information (PHI) is created on behalf of and by health consumers to support their care and wellness. Being able to manage PHI effectively is particularly important for older adults with declining health and increasing healthcare needs. Available tools designed to support PHI management (PHIM) remain insufficient. To offer more effective PHIM tools and support, a comprehensive understanding of PHIM work is needed.

Objective:

The study’s primary objective is to use the Patient Work System model to provide a holistic description of PHIM work from the perspective of key informants with experience assisting health consumers – including older adults – with managing their PHI. A secondary objective is to examine how factors associated with four Patient Work System components (person, tasks, tools/technologies, and context) interact to support or compromise PHIM work performance.

Methods:

A modified e‐Delphi methodology is used to complete three online rounds of open-ended questions and obtain consensus among the panel of 16 experts. Data were collected from April to December 2017. The Patient Work System model is used as a coding schema and guide the interpretation of findings during analysis.

Results:

The PHIM work of adults who sought assistance focused on the tasks of acquiring, organizing and storing three classifications of PHI (clinical, financial, and reference), then processing, reconciling and storing the clinical and financial classifications to tend to their health, healthcare, and health finances. However, the complexities of PHI and PHIM-related work often exceeded the abilities and willingness of those who sought assistance. Six factors were found to contribute to the complexity of PHIM work for older adults. 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 provider-payer 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 consumers were among the most burdensome tasks, particularly for older adults. As a result, personal stakeholders (paid and unpaid) were called upon or voluntarily stepped in to assist with PHIM work.

Conclusions:

Streamlining and automating two of the most common and burdensome PHIM undertakings could drastically reduce health consumers’ PHIM workload: a) developing and maintaining accurate current and past health summaries, and b) tracking medical bills and insurance claims to reconcile discrepancies. Other improvements that hold promise are simplification and standardization of commonly used financial and clinical PHI, standardization and automation of commonly used PHI acquisition interfaces, and provision of secure, HIPAA-certified PHI tools and technologies that control multi-person access for PHI stored by health consumers in electronic and paper formats.