Barriers to the use of personal health records by patients: a structured review.

INTRODUCTION: An increasing focus on personal electronic health records (PHRs) offers healthcare benefits for patients, particularly those in undeserved and marginalised populations, who are at risk of receiving less effective healthcare, and may have worse health outcomes. However, PHRs are likely to favour text, technical and health literate users, and be less suitable for disadvantaged patients. These concerns have prompted this review of the literature, which seeks evidence about barriers to the adoption and continued use of PHRs, the nature of the evidence for those barriers, and the stage of PHR implementation where particular barriers apply. METHODS: Searches in PubMed, Embase, CINAHL and ProQuest databases were used to retrieve articles published in English after 2003 in a refereed journal, or presented in a refereed conference or scientific meeting. After screening to remove items which were out of scope, the phase of the PHR implementation, the type of investigation, and PHR barriers were categorised using thematic coding. RESULTS: The search retrieved 395 items; screening identified 34 in-scope publications, which provided evidence of 21 identified barriers to patient adoption and continued use of PHRs, categorised here as Individual, Demographic, Capability, Health-related, PHR or Attitudinal factors. Barriers were identified in most phases of PHR implementation, and in most types of study. A secondary outcome identified that eleven of the publications may have introduced a bias by excluding participants who were less affluent, less capable, or marginalised. CONCLUSIONS: PHR barriers can interfere with the decision to start using a PHR, with the adoption process, and with continued use, and the impact of particular barriers may vary at different phases of PHR adoption. The complex interrelationships which exist between many of the barriers is suggested in some publications, and emerges more clearly from this review. Many PHR barriers appear to be related to low socioeconomic status. A better understanding is needed of how the effect of barriers is manifested, how that effect can be countered, and how planning and implementation of PHR initiatives can make allowance for patient level barriers to PHR adoption and use, with appropriate actions to mitigate the effect of those barriers for more disadvantaged patients.

The Invisibility of Disadvantage: Why Do We Not Notice?

Personal health records (PHRs) offer tantalising benefits for patients and healthcare providers, including improvements in patient-provider communication, patient empowerment, and access to data and information. A suspicion that disadvantaged patients are less likely to use or benefit from PHRs stimulated a research agenda that included: (a) a literature review; and (b) empirical analysis of eight years' hospital admission and discharge data linked to measures of patient social disadvantage. The results demonstrated an association between disadvantage, increased use of public hospital services and barriers to PHR use. These findings may appear self-evident, but dramatically highlight how disadvantaged patients continue to be overlooked in many e-health design processes, and are rarely a focus of user centred design. The paper concludes by briefly considering the implications of this invisibility.

Risk and the Internet of Things: Damocles, Pythia, or Pandora?

The Internet of Things holds great promise for healthcare, but also embodies a number of risks. This analysis suggests that the risks are as yet poorly delineated (having features in common with the oracle Pythia, and with Pandora and her box), and that adopting the precautionary principle is appropriate.

Patient Centred Systems: Techno-Anthropological reflections on the challenges of 'meaningfully engaging' patients within health informatics research.

This chapter explores how Techno-Anthropology can contribute to more explicitly professional and ethically responsible reflections on the socio-technical practices involved in meaningfully engaging patients in health informatics research. The chapter draws on insights from health informatics research projects focused on chronic disease and self-management conducted in Tasmania during the last 10 years. Through these projects the paper explores three topics of relevance to 'meaningful engagement' with patients: (i) Patient Self-Management and Chronic Disease (ii) Patients as Users in Health Informatics research, and, (iii) Evaluations of outcomes in Health and Health Informatics Interventions. Techno-Anthropological reflections are then discussed through the concepts of liminality, polyphony and power. This chapter argues that beyond its contribution to methodology, an important role for Techno-Anthropology in patient centred health informatics research may be its capacity to support new ways of conceptualising and critically reflecting on the construction and mediation of patients' needs, values and perspectives.

Personal health records are designed for people like us.

Current approaches to designing, implementing and evaluating personal health record systems reflect the attributes and assumptions of well-educated and well to-do users (People like Us: PLUs) rather than the needs of the most disadvantaged in society (the disempowered, disengaged and disconnected: DDDs). These electronic systems for increasing accessibility to personal health information may accentuate rather than mitigate the emerging eHealth divide. Using a PubMed review of literature on personal health record systems, we identified only seven of 73 papers, and one of 29 abstracts which made specific mention of users who were disadvantaged by low literacy levels or difficulties with access to technology. This work is part of a larger study into personal health records and disadvantage.

The PLU problem: are we designing personal ehealth for people like us?

The near-pervasive introduction of ehealth systems, and the more recent implementation of systems intended for patient use offer patients the opportunity to participate in their own care. Unfortunately the design of these systems means that they may work better for "People Like Us" rather than for those on the wrong side of the 'digital divide'. This paper looks at the professional, practical and ethical implications of this conundrum.

Social media and patient self-management: not all sites are created equal.

This paper compares two social media sites that aim to support patients to enhance self-management. The first site, PatientsLikeMe is a well established global site designed to allow peer-to-peer communication between people with similar conditions. The second, HealthShare, is a recently developed site for Australians described as "Australia's Social Health Network". The comparison conducted examines the purpose, ownership, and design of both sites as well as how the data they collect is used. Analysis highlights that PatientsLikeMe actively facilitates patient self-management, while HealthShare is revealed to be a professionally moderated health information portal presented as a social networking site. While the impetus for the development of PatientsLikeMe is clear, the motives underpinning HealthShare are less obvious. With increasing patient interest in connecting with, and sharing information with one another, awareness of the nature and motivations underpinning sites that provide these services is of increasing relevance.

How should we define eHealth, and does the definition matter?

There is no useful definition for eHealth; we would like to find one. This study will provide a contribution to clarify the discussion on eHealth as a concept to enhance the understanding of the range of meanings which have been ascribed to the term ehealth.

Morpholino injection in Xenopus.

The study of gene function in developmental biology has been significantly furthered by advances in antisense technology made in the early 2000s. This was achieved, in particular, by the introduction of morpholino (MO) oligonucleotides. The introduction of antisense MO oligonucleotides into cells enables researchers to readily reduce the levels of their protein of interest without investing huge financial or temporal resources, in both in vivo and in vitro model systems. Historically, the African clawed frog Xenopus has been used to study vertebrate embryological development, due to its ability to produce vast numbers of offspring that develop rapidly, in synchrony, and can be cultured in buffers with ease. The developmental progress of Xenopus embryos has been extensively characterized and this model organism is very easy to maintain. It is these attributes that enable MO-based knockdown strategies to be so effective in Xenopus. In this chapter, we will detail the methods of microinjecting MO oligonucleotides into early embryos of X. laevis and X. tropicalis. We will discuss how MOs can be used to prevent either pre-mRNA splicing or translation of the specific gene of interest resulting in abrogation of that gene's function and advise on what control experiments should be undertaken to verify their efficacy.

A comparative survey of the frequency and distribution of polymorphism in the genome of Xenopus tropicalis.

Naturally occurring DNA sequence variation within a species underlies evolutionary adaptation and can give rise to phenotypic changes that provide novel insight into biological questions. This variation exists in laboratory populations just as in wild populations and, in addition to being a source of useful alleles for genetic studies, can impact efforts to identify induced mutations in sequence-based genetic screens. The Western clawed frog Xenopus tropicalis (X. tropicalis) has been adopted as a model system for studying the genetic control of embryonic development and a variety of other areas of research. Its diploid genome has been extensively sequenced and efforts are underway to isolate mutants by phenotype- and genotype-based approaches. Here, we describe a study of genetic polymorphism in laboratory strains of X. tropicalis. Polymorphism was detected in the coding and non-coding regions of developmental genes distributed widely across the genome. Laboratory strains exhibit unexpectedly high frequencies of genetic polymorphism, with alleles carrying a variety of synonymous and non-synonymous codon substitutions and nucleotide insertions/deletions. Inter-strain comparisons of polymorphism uncover a high proportion of shared alleles between Nigerian and Ivory Coast strains, in spite of their distinct geographical origins. These observations will likely influence the design of future sequence-based mutation screens, particularly those using DNA mismatch-based detection methods which can be disrupted by the presence of naturally occurring sequence variants. The existence of a significant reservoir of alleles also suggests that existing laboratory stocks may be a useful source of novel alleles for mapping and functional studies.

Xenopus: An emerging model for studying congenital heart disease.

Congenital heart defects affect nearly 1% of all newborns and are a significant cause of infant death. Clinical studies have identified a number of congenital heart syndromes associated with mutations in genes that are involved in the complex process of cardiogenesis. The African clawed frog, Xenopus, has been instrumental in studies of vertebrate heart development and provides a valuable tool to investigate the molecular mechanisms underlying human congenital heart diseases. In this review, we discuss the methodologies that make Xenopus an ideal model system to investigate heart development and disease. We also outline congenital heart conditions linked to cardiac genes that have been well studied in Xenopus and describe some emerging technologies that will further aid in the study of these complex syndromes.

Language games and patient-centred eHealth.

The sharing of clinical information between ehealth systems requires a common terminology, and SNOMED CT is seen as an acceptable solution for this task. Widespread adoption of SNOMED CT may mean that other terminologies, particularly those of citizens and patients, are sidelined or ignored. This paper considers the role of a citizen's "voice" in a connected ehealth world.

Patient safety and sociotechnical considerations for electronic handover tools in an Australian ehealth landscape.

The Australian Commission for Safety and Quality in Health Care (ACSQHC) coordinates national improvements in a range of complex health system problems including clinical handover, and has funded a range of handover improvement projects in Australia. One of these, the SafeTECH project in South Australia has developed guidelines for safe use of electronic handover tools. These guidelines were developed using evidence from three hospital case studies into the use of an electronic tool to support different types of shift-to-shift handover. This paper provides an overview of the project, and highlights challenges for patient safety in the design and use of electronic tools to support clinical handover in a busy clinical environment. The paper then considers these challenges within the broader context of the Australian ehealth landscape. Australia's National eHealth Transition Authority (NEHTA) is actively developing ehealth standards and infrastructure requirements for the electronic collection and secure exchange of health information. The paper argues for flexible standardisation in the design and implementation of electronic handover tools to ensure that all key dimensions of the challenges faced in ensuring patient safety are addressed.

Decoding development in Xenopus tropicalis.

Xenopus tropicalis is rapidly being adopted as a model organism for developmental biology research and has enormous potential for increasing our understanding of how embryonic development is controlled. In recent years there has been a well-organized initiative within the Xenopus community, funded largely through the support of the National Institutes of Health in the US, to develop X. tropicalis as a new genetic model system with the potential to impact diverse fields of research. Concerted efforts have been made both to adapt established methodologies for use in X. tropicalis and to develop new techniques. A key resource to come out of these efforts is the genome sequence, produced by the US Department of Energy's Joint Genome Institute and made freely available to the community in draft form for the past three years. In this review, we focus on how advances in X. tropicalis genetics coupled with the sequencing of its genome are likely to form a foundation from which we can build a better understanding of the genetic control of vertebrate development and why, when we already have other vertebrate genetic models, we should want to develop genetic analysis in the frog.

Developmental expression patterns of Tbx1, Tbx2, Tbx5, and Tbx20 in Xenopus tropicalis.

T-box genes have diverse functions during embryogenesis and are implicated in several human congenital disorders. Here, we report the identification, sequence analysis, and developmental expression patterns of four members of the T-box gene family in the diploid frog Xenopus tropicalis. These four genes-Tbx1, Tbx2, Tbx5, and Tbx20-have been shown to influence cardiac development in a variety of organisms, in addition to their individual roles in regulating other aspects of embryonic development. Our results highlight the high degree of evolutionary conservation between orthologs of these genes in X. tropicalis and other vertebrates, both at the molecular level and in their developmental expression patterns, and also identify novel features of their expression. Thus, X. tropicalis represents a potentially valuable vertebrate model in which to further investigate the functions of these genes through genetic approaches.

T-box genes in early embryogenesis.

The T-box gene family, encoding related DNA-binding transcriptional regulators, plays an essential role in controlling many aspects of embryogenesis in a wide variety of organisms. The T-box genes exhibit diverse patterns of spatial and temporal expression in the developing embryo, and both genetic and molecular embryological studies have demonstrated their importance in regulating cell fate decisions that establish the early body plan, and in later processes underlying organogenesis. Despite these studies, little is known of either the regulation of the T-box genes or the identities of their transcriptional targets. The aim of this review is to examine the diverse yet conserved roles of several T-box genes in regulating early patterning in chordates and to discuss possible mechanisms through which this functional diversity might arise. Developmental Dynamics 229:201-218, 2004.