BACKGROUND
The consumer health movement has placed increased significance on the concept of patient activation, described as an individual’s ability to ‘take independent actions to manage their health and care’.1 Activated healthcare consumers have better health outcomes, increased patient satisfaction and lower healthcare expenditures.1–3 Older adults may benefit from increased activation due to their higher medical complexity. A 2014 survey of older adults from 11 countries found that between 33% and 68% of older adults had two or more chronic conditions, between 29% and 53% took four of more medications, and many older adults reported challenges with care coordination.4
Personal health records (PHRs) are tools that have been designed to support patient activation by allowing consumers to access, manage and share their personal health information.5 To support increased activation, recent governmental efforts such as the Affordable Care Act (United States (US)) and the Digital Agenda for Europe (European Union) have sought to increase adoption of PHRs among healthcare consumers.6 These efforts have led to a rise in PHR adoption rates,7,8 but recent studies have found that older adults are less likely to adopt PHRs than younger or middle-aged adults.9–11 Disparities are even more pronounced in older adult minority populations, and with older adults with lower levels of education attainment.10,11 One reason for these disparities may be that the PHRs have not been designed to truly meet older adult needs.12,13 This hypothesis is consistent with other research that suggests older adults adopt health information technology for different reasons than younger adults.14
Performing end-user evaluations of health information systems is important for obtaining information on how to encourage and sustain adoption of technologies.15 Therefore, in order to better understand older adult perspectives on PHRs and to identify their self-reported needs, our study systematically examined publications that included older adult participants in PHR evaluations. In our review, we explore the characteristics of the older adult study participants, and we describe their views on the systems. Our findings highlight several gaps in literature and call for future studies to engage diverse older adults to better understand their PHR requirements.
Materials and Methods
Study selection
We generated search terms in collaboration with a biomedical librarian. For ‘personal health record’, we used: ‘personal health record’, ‘personal medical record’, ‘personal electronic health record’, ‘patient health record’, ‘patient medical record’, ‘patient web portal’, ‘shared electronic health record’, ‘shared electronic medical record’, ‘patient internet portal’ and ‘personally controlled health record.’ For ‘older adult’, we used: ‘older adult’, ‘elder’, ‘older people’, ‘aged’, ‘aging’, ‘geriatric’ and ‘senior.’ We also used indexing terms unique to the databases where appropriate. Search terms for ‘evaluation’ were not generated after careful analysis of existing literature. This concept is not described uniformly across biomedical literature, and we wanted to ensure that we captured the greatest number of relevant articles.
To identify the publications, we systematically searched Medline (via PubMed), CINAHL (via EBSCO), PsycINFO (via EBSCO), and Embase (via Ovid). After yields from each search were merged and duplicate citations were removed, citations were uploaded into the Internet-based systematic review website Covidence16 to track the screening processes. No date restrictions were placed on the search. The primary author (LK) conducted all searches on July 1, 2015.
LK screened all abstracts, and any publication that was clearly ineligible was excluded. GD randomly screened 10% of the abstracts (n = 80). Initial agreement between the authors was 90% (n = 72), and disagreements were resolved through consensus. After consensus, one abstract was added to the full-text review (n = 1, 1.25% of random abstracts screened).
Full-text reviews were performed on publications that met inclusion criteria or if the abstract did not provide adequate information to make the determination. LK screened all full-text articles. GD randomly screened 10% of rejected articles (n = 16) and all included articles (n = 10). Initial agreement was 88% and disagreements were resolved through consensus. After meeting, no additional articles were added to the final list of publications.
Inclusion and exclusion criteria
Full-text peer reviewed publications were included if the manuscript: (a) described a primary data analysis on a consumer evaluation, (b) analyzed study participants aged 60 and older separately from other adult populations and (c) evaluated a PHR that met our definition: a system that allows consumers to access, manage and share personal health information over the Internet. Some publications did not report the mean or median participant age, but reported age categories of participants. These manuscripts were included if the age categories of 60 and older included at least 50% of the total participants. In order to confirm that the PHR met our definition, LK asked the publication authors to describe the PHR functionality at the time of evaluation through email communications.
Publications were excluded if the manuscript described a study where: (a) participants were not exposed to a PHR (e.g. a focus group of non-PHR users), (b) participants were only exposed to a PHR during laboratory settings, or (c) if the full text was not available in English.
Abstraction
To provide context for the older adult opinions, we abstracted publication details including study design, patient population, study setting, and PHR features. To address the purpose of our review, we abstracted the participant demographics, evaluation outcome measures and results, and facilitators and barriers for PHR use among older adults.
Quality reporting was conducted using the three most important items from the condensed version of the Statement on Reporting of Evaluation Studies in Health Informatics (Stare-HI).17 In addition, we added two additional criteria. These criteria help readers better understand the context of the evaluation study results and were: ‘provides a description of the PHR functionality under investigation’ and ‘describes how participants used the PHR functionality under investigation.’ Articles were ranked on a scale of 0 (worst) to 5 (best). Authors independently scored each included article, scores were merged, and disagreements were resolved through consensus.