"I am pregnant and my husband has diabetes. Is there a risk for my child?" A qualitative study of questions asked by email about the role of genetic susceptibility to diabetes

<p>Abstract</p> <p>Background</p> <p>Diabetes Mellitus is a global health problem. Scientific knowledge on the genetics of diabetes is expanding and is more and more utilised in clinical practice and primary prevention strategies. Health consumers have become increasingly interested in genetic information. In the Netherlands, the <it>National Genetic Research and Information Center </it>provides online information about the genetics of diabetes and thereby offers website visitors the opportunity to ask a question per email. The current study aims at exploring people's need of (additional) information about the role of inheritance in diabetes. Results may help to tailor existing clinical and public (online) genetic information to the needs of an increasing population at risk for diabetes.</p> <p>Methods</p> <p>A data base with emailed questions about diabetes and inheritance (n = 172) is used in a secondary content analysis. Questions are posted in 2005-2009 via a website providing information about more than 600 inheritable disorders, including all diabetes subtypes. Queries submitted were classified by contents as well as persons' demographic profiles.</p> <p>Results</p> <p>Questions were received by diabetes patients (49%), relatives (30%), and partners (21%). Questioners were relatively young (54.8% ≤ 30 years) and predominantly female (83%). Most queries related to type 1 diabetes and concerned topics related to (future) pregnancy and family planning. Questioners mainly asked for risk estimation, but also clarifying information (about genetics of diabetes in general) and advice (mostly related to family planning) was requested. Preventive advice to reduce own diabetes risk was hardly sought.</p> <p>Conclusions</p> <p>Genetic information on diabetes provided by professionals or public health initiatives should address patients, as well as relatives and partners. In particular women are receptive to genetic information; they worry about the diabetes related health of (future) offspring. It seems important that information on the contribution of genetics to type 1 diabetes is more readily available. Considering the high prevalence of type 2 diabetes with strong evidence for a genetic predisposition, more effort seems needed to promote awareness around familial clustering and primary prevention.</p

Differences in health information literacy competencies among older adults, elderly and younger citizens

Abstract To address the research gap on age-based differences in health information literacy (HIL), we investigated how younger (born 1960–) and older adults (1946–1960), and elderly citizens (–1945) differed from each other by their HIL competencies. Data were collected with an online survey of patients using the Swedish national electronic health record system. Altogether, 2,587 users responded. One-way ANOVA with post hoc tests revealed several differences between the groups: younger adults were less likely to value health information than older adults; older adults and elderly were least likely to compare information from multiple sources and had trouble in determining health information needs; older adults were most likely to have trouble understanding health terminology and the elderly to have difficulties in understanding medicinal package labels. The study shows that HIL is not necessarily improving or declining but adapting to challenges of advanced age

The concept of usefulness in library and information science research

Abstract Introduction: There is not much doubt that information, information services and systems need to be useful. In this light, the relatively lack of conceptual elaboration of the concept of usefulness in the library and information science literature can be regarded as somewhat surprising. Method: This paper provides a conceptual overview of the use of the notion of usefulness in library and information science literature, explicates its relation to key parallel concepts, and on the basis of an empirical vignette in the context of health information research, discusses the potential limits and advantages of referring to usefulness instead of and together with other related concepts. Analysis: A review of literature relating to the concept of usefulness was conducted to examine how it has been used in library and information science. Results: A close reading of the literature shows an overlap between related concepts but at the same time, diverging foci of interest in and emphasis on what and how information, information services and, for instance, information systems are considered beneficial or suitable for their users and particular uses. Conclusions: There is a need for better conceptual clarity in the literature regarding usefulness and related concepts. The review shows that usefulness can be literally a useful concept for addressing the user and use (versus e.g. system, content or topic) perspective to engagements with people, services, systems and beyond

Enablers for and barriers to using My Kanta:A focus group study of older adults’ perceptions of the National Electronic Health Record in Finland

Abstract To explicate how experiences with patient-accessible electronic health records correspond to the expectations of the users, we present qualitative results of older adults’ experiences with the Finnish national patient-accessible health record My Kanta and similar services. 24 persons, 17 women and 7 men aged 55–73, took part in the study. We interviewed six focus groups of 3–5 participants with previous experience of My Kanta, in two cities in Finland. We used a convenience sample and video- and audio-recording as well as note taking. The interviews were transcribed verbatim. The inductive analysis was based on content analysis. We identified major uses, enablers, barriers, and outcomes of My Kanta. In addition to earlier reported barriers and enablers, the findings show that launch-time lack of useful content and features in systems still under development can cause frustration and hinder their effective use at the time and in the long run. Concerns and barriers relating to use were socio-techno-informational and tightly associated with the contents of the system. Improved security, usability and additional information and functions might increase use. Furthermore, coherent and timely information from health-care providers should be available in the e-health services

Everyday health information literacy and attitudes towards digital health services among Finnish older adults

Abstract Everyday health information literacy (EHIL) denotes people’s confidence and perceptions of their capability to obtain, evaluate, and use health information in everyday life. This paper presents results from a survey of older Finns on how EHIL relates to perceptions of digital health services. A postal survey was conducted with a random sample of 1,500 Finns aged 55–70 years. In total, 373 completed surveys (25%) were returned. We used an adapted screening tool to measure EHIL and subject position scales to indicate attitudes towards digital health services. The data were analysed using PLS-SEM in SmartPLS 3.0. The analysis suggested that EHIL is positively related to more positive attitudes to digital health services and negatively to more negative attitudes to such services. The results emphasise the importance of EHIL as an enabler of the acceptance of digital health services. The study also introduces new methods for analysing EHIL

Anticipating ageing:older adults reading their medical records

Abstract In spite of the general interest in health information behaviour, there is little earlier research on how older adults, who are still active in working life but approaching retirement, differ from other age groups. A survey with Swedish patients who had ordered and read their medical record was conducted to map the preferences and motivations of older adults (born 1946–1960) ordering a copy of their medical record, and using medical records based e-health and information services in the future. The results do not indicate an obvious linear relationship between age and motivation to use online health information but show several differences between the age groups. Older adults were less interested in communication with their medical doctor by e-mail. Yet, they had searched health information in the Internet during the last week more likely than young. They were more inclined to read medical record to get an overview of their health than young, but less confident that they understood most of the content or turn to their family and friends to seek help than the elderly. When compared to younger adults and elderly people, older adults are the least confident and least motivated to use online health information. It is suggested that older adulthood can be seen as a transitory stage of life when the need of health information increases and engagement with health changes. The results agree with prior research on the potential usefulness of (online) medical records as a way to inform citizens. However, specific provision strategies may be necessary to match the needs and motivations of different age groups

Technological and informational frames:explaining age-related variation in the use of patient accessible electronic health records as technology and information

Abstract Purpose: Data from a national patient survey (N = 1,155) of the Swedish PAEHR ”Journalen” users were analysed, and an extended version of the theory of technological frames was developed to explain the variation in the technological and informational framing of information technologies found in the data. Design/methodology/approach: Patient Accessible Electronic Health Records (PAEHRs) are implemented globally to address challenges with an ageing population. However, firstly, little is known about age-related variation in PAEHR use, and secondly, user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other. The purpose of this study is to investigate these two under-studied aspects of PAEHRs and propose a framework based on the theory of technological frames to support studying the second aspect, i.e. the interplay of information and technology–related perceptions. Findings: The results suggest that younger respondents were more likely to be interested in PAEHR contents for general interest. However, they did not value online access to the information as high as older ones. Older respondents were instead inclined to use medical records information to understand their health condition, prepare for visits, become involved in their own healthcare and think that technology has a much potential. Moreover, the oldest respondents were more likely to consider the information in PAEHRs useful and aimed for them but to experience the technology as inherently difficult to use. Research limitations/implications: The sample excludes non-users and is not a representative sample of the population of Sweden. However, although the data contain an unknown bias, there are no specific reasons to believe that it would differently affect the survey’s age groups. Practical implications: Age should be taken into account as a key factor that influences perceptions of the usefulness of PAEHRs. It is also crucial to consider separately patients’ views of PAEHRs as a technology and of the information contained in the EHR when developing and evaluating existing and future systems and information provision for patients. Social implications: This study contributes to bridging the gap between information behaviour and systems design research by showing how the theory of technological frames complemented with parallel informational frames to provide a potentially powerful framework for elucidating distinct conceptualisations of (information) technologies and the information they mediate. The empirical findings show how information and information technology needs relating to PAEHRs vary according to age. In contrast to the assumptions in much of the earlier work, they need to be addressed separately. Originality/value: Few earlier studies focus on (1) age-related variation in PAEHR use and (2) user perceptions of the PAEHR technology and the health record information and how the technology and information–related perceptions are linked to each other

Information behavior and practices research informing information systems design

Abstract Information behavior and practices (IBP) research has been repeatedly criticized for having little impact on information systems development (ISD). Claiming that there is a complete disconnect would be an exaggeration but itis apparent that it is not always easy to translate findings of IBP research to workable design recommendations. Based on a reading of earlier literature and a closer investigation of three illustrative example contexts, this article underlines that the value of IBP research for ISD lies in its capability to inform ISD of the variety of ways people deal with information beyond individual systems, their own wants and designers’ assumptions. Moreover, it highlights that the implications of information systems go beyond their primary users. Instead of overemphasizing the contextuality of findings, a part of IBP research would benefit from an increased focus on explicating its epistemological extents and limits and identifying, which findings are transferable, what distinguishes specific contexts, what are their defining constraints and priorities, and what aspects of their uniqueness are assumptions and simple clichés