Use of online health information to manage children’s health care: A prospective study investigating parental decisions

Background The use of the internet to access information is rapidly increasing; however, the quality of health information provided on various online sites is questionable. We aimed to examine the underlying factors that guide parents' decisions to use online information to manage their child's health care, a behaviour which has not yet been explored systematically. Methods Parents (N=391) completed a questionnaire assessing the standard theory of planned behaviour (TPB) measures of attitude, subjective norm, perceived behavioural control (PBC), and intention as well as the underlying TPB belief-based items (i.e., behavioural, normative, and control beliefs) in addition to a measure of perceived risk and demographic variables. Two months later, consenting parents completed a follow-up telephone questionnaire which assessed the decisions they had made regarding their use of online information to manage their child's health care during the previous 2 months. Results We found support for the TPB constructs of attitude, subjective norm, and PBC as well as the additional construct of perceived risk in predicting parents' intentions to use online information to manage their child's health care, with further support found for intentions, but not PBC, in predicting parents' behaviour. The results of the TPB belief-based analyses also revealed important information about the critical beliefs that guide parents' decisions to engage in this child health management behaviour. Conclusions This theory-based investigation to understand parents' motivations and online information-seeking behaviour is key to developing recommendations and policies to guide more appropriate help-seeking actions among parents.

Online health information - what the newspapers tell their readers: a systematic content analysis

Background: This study investigated the nature of newspaper reporting about online health information in the UK and US. Internet users frequently search for health information online, although the accuracy of the information retrieved varies greatly and can be misleading. Newspapers have the potential to influence public health behaviours, but information has been lacking in relation to how newspapers portray online health information to their readers.

Methods: The newspaper database Nexis (R) UK was searched for articles published from 2003 - 2012 relating to online health information. Systematic content analysis of articles published in the highest circulation newspapers in the UK and US was performed. A second researcher coded a 10% sample to establish inter-rater reliability of coding.

Results: In total, 161 newspaper articles were included in the analysis. Publication was most frequent in 2003, 2008 and 2009, which coincided with global threats to public health. UK broadsheet newspapers were significantly more likely to cover online health information than UK tabloid newspapers (p = 0.04) and only one article was identified in US tabloid newspapers. Articles most frequently appeared in health sections. Among the 79 articles that linked online health information to specific diseases or health topics, diabetes was the most frequently mentioned disease, cancer the commonest group of diseases and sexual health the most frequent health topic. Articles portrayed benefits of obtaining online health information more frequently than risks. Quotations from health professionals portrayed mixed opinions regarding public access to online health information. 108 (67.1%) articles directed readers to specific health-related web sites. 135 (83.9%) articles were rated as having balanced judgement and 76 (47.2%) were judged as having excellent quality reporting. No difference was found in the quality of reporting between UK and US articles.

Conclusions: Newspaper coverage of online health information was low during the 10-year period 2003 to 2012. Journalists tended to emphasise the benefits and understate the risks of online health information and the quality of reporting varied considerably. Newspapers directed readers to sources of online health information during global epidemics although, as most articles appeared in the health sections of broadsheet newspapers, coverage was limited to a relatively small readership.

Online health information seeking: How people with multiple sclerosis find, assess and integrate treatment information to manage their health

Background and objective: The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study. Design: Sixty participants (51 people with MS; nine family members) took part in a focus group or online forum. They were asked to describe how they find and assess reliable treatment information (particularly online) and how this changes over time. Thematic analysis was underpinned by a coding frame. Results: Participants described that there was both too much information online and too little that applied to them. They spoke of wariness and scepticism but also empowerment. The availability of up-to-date and unbiased treatment information, including practical and lifestyle-related information, was important to many. Many participants were keen to engage in a 'research partnership' with health professionals and developed a range of strategies to enhance the trustworthiness of online information. We use the term 'self-regulation' to capture the variations in information seeking behaviour that participants described over time, as they responded to their changing information needs, their emotional state and growing expertise about MS. © 2014 John Wiley & Sons Ltd.

Health literacy and the Internet: a study on the readability of Australian online health information

OBJECTIVE: Almost 80% of Australian Internet users seek out health information online so the readability of this information is important. This study aimed to evaluate the readability of Australian online health information and determine if it matches the average reading level of Australians. METHODS: Two hundred and fifty-one web pages with information on 12 common health conditions were identified across sectors. Readability was assessed by the Flesch-Kincaid (F-K), Simple Measure of Gobbledygook (SMOG) and Flesch Reading Ease (FRE) formulas, with grade 8 adopted as the average Australian reading level. RESULTS: The average reading grade measured by F-K and SMOG was 10.54 and 12.12 respectively. The mean FRE was 47.54, a 'difficult-to-read' score. Only 0.4% of web pages were written at or below grade 8 according to SMOG. Information on dementia was the most difficult to read overall, while obesity was the most difficult among government websites. CONCLUSIONS AND IMPLICATIONS: The findings suggest that the readability of Australian health websites is above the average Australian levels of reading. A quantifiable guideline is needed to ensure online health information accommodates the reading needs of the general public to effectively use the Internet as an enabler of health literacy.

Online health information seeking in the context of the medical consultation in Switzerland

A growing number of patients search for medical information on the Internet. Understanding how they use the Internet is important, as this might impact their health, patient-practitioner roles, and general health care provision. In this article, we illustrate the motives of online health information seeking in the context of the doctor-patient relationship in Switzerland. We conducted semistructured interviews with patients who searched for health information online before or after a medical consultation. Findings suggest that patients searched for health information online to achieve the goals of preparing for the consultation, complementing it, validating it, and/or challenging its outcome. The initial motivations for online health information seeking are identified in the needs for acknowledgment, reduction of uncertainty, and perspective. Searching health information online was also encouraged by personal and contextual factors, that is, a person's sense of self-responsibility and the opportunity to use the Internet. Based on these results, we argue that online health information seeking is less concerned with what happens during the consultation than with what happens before or after it, in the sociocultural context.

Predictive modelling : parents’ decision making to use online child health information to increase their understanding and/or diagnose or treat their child’s health

Abstract Background The quantum increases in home Internet access and available online health information with limited control over information quality highlight the necessity of exploring decision making processes in accessing and using online information, specifically in relation to children who do not make their health decisions. Objectives To understand the processes explaining parents’ decisions to use online health information for child health care. Methods Parents (N = 391) completed an initial questionnaire assessing the theory of planned behaviour constructs of attitude, subjective norm, and perceived behavioural control, as well as perceived risk, group norm, and additional demographic factors. Two months later, 187 parents completed a follow-up questionnaire assessing their decisions to use online information for their child’s health care, specifically to 1) diagnose and/or treat their child’s suspected medical condition/illness and 2) increase understanding about a diagnosis or treatment recommended by a health professional. Results Hierarchical multiple regression showed that, for both behaviours, attitude, subjective norm, perceived behavioural control, (less) perceived risk, group norm, and (non) medical background were the significant predictors of intention. For parents’ use of online child health information, for both behaviours, intention was the sole significant predictor of behaviour. The findings explain 77% of the variance in parents’ intention to treat/diagnose a child health problem and 74% of the variance in their intentions to increase their understanding about child health concerns. Conclusions Understanding parents’ socio-cognitive processes that guide their use of online information for child health care is important given the increase in Internet usage and the sometimes-questionable quality of health information provided online. Findings highlight parents’ thirst for information; there is an urgent need for health professionals to provide parents with evidence-based child health websites in addition to general population education on how to evaluate the quality of online health information.

An argument for using participatory approaches for the design of online health interventions targeted at young women

The Internet is becoming an increasingly important portal to health information and means for promoting health in user populations. As the most frequent users of online health information, young women are an important target population for e-health promotion interventions. Health-related websites have traditionally been generic in design, resulting in poor user engagement and affecting limited impacts on health behaviour change. Mounting evidence suggests that the most effective health promotion communication strategies are collaborative in nature, fully engaging target users throughout the development process. Participatory design approaches to interface development enable researchers to better identify the needs and expectations of users, thus increasing user engagement in, and promoting behaviour change via, online health interventions. This article introduces participatory design methods applicable to online health intervention design and presents an argument for the use of such methods in the development of e-Health applications targeted at young women.

Understanding the Diversity of User Requirements for Interactive Online Health Services

Peer reviewed

Online geographic information systems for improving health planning practice : lessons learned from the case study of Logan-Beaudesert, Australia

This study examines the impact of utilising a Decision Support System (DSS) in a practical health planning study. Specifically, it presents a real-world case of a community-based initiative aiming to improve overall public health outcomes. Previous studies have emphasised that because of a lack of effective information, systems and an absence of frameworks for making informed decisions in health planning, it has become imperative to develop innovative approaches and methods in health planning practice. Online Geographical Information Systems (GIS) has been suggested as one of the innovative methods that will inform decision-makers and improve the overall health planning process. However, a number of gaps in knowledge have been identified within health planning practice: lack of methods to develop these tools in a collaborative manner; lack of capacity to use the GIS application among health decision-makers perspectives, and lack of understanding about the potential impact of such systems on users. This study addresses the abovementioned gaps and introduces an online GIS-based Health Decision Support System (HDSS), which has been developed to improve collaborative health planning in the Logan-Beaudesert region of Queensland, Australia. The study demonstrates a participatory and iterative approach undertaken to design and develop the HDSS. It then explores the perceived user satisfaction and impact of the tool on a selected group of health decision makers. Finally, it illustrates how decision-making processes have changed since its implementation. The overall findings suggest that the online GIS-based HDSS is an effective tool, which has the potential to play an important role in the future in terms of improving local community health planning practice. However, the findings also indicate that decision-making processes are not merely informed by using the HDSS tool. Instead, they seem to enhance the overall sense of collaboration in health planning practice. Thus, to support the Healthy Cities approach, communities will need to encourage decision-making based on the use of evidence, participation and consensus, which subsequently transfers into informed actions.

Impact of the social networking applications for health information management for patients and physicians

Most social network users hold more than one social network account and utilize them in different ways depending on the digital context. For example, friendly chat on Facebook, professional discussion on LinkedIn, and health information exchange on PatientsLikeMe. Thus many web users need to manage many disparate profiles across many distributed online sources. Maintaining these profiles is cumbersome, time consuming, inefficient, and leads to lost opportunity. In this paper we propose a framework for multiple profile management of online social networks and showcase a demonstrator utilising an open source platform. The result of the research enables a user to create and manage an integrated profile and share/synchronise their profiles with their social networks. A number of use cases were created to capture the functional requirements and describe the interactions between users and the online services. An innovative application of this project is in public health informatics. We utilize the prototype to examine how the framework can benefit patients and physicians. The framework can greatly enhance health information management for patients and more importantly offer a more comprehensive personal health overview of patients to physicians.

Barriers to the adoption of health information technology

Information Technology (IT) is successfully applied in a diverse range of fields. Though, the field of Medical Informatics is more than three decades old, it shows a very slow progress compared to many other fields in which the application of IT is growing rapidly. The spending on IT in health care is shooting up but the road to successful use of IT in health care has not been easy. This paper discusses about the barriers to the successful adoption of information technology in clinical environments and outlines the different approaches used by various countries and organisations to tackle the issues successfully. Investing financial and other resources to overcome the barriers for successful adoption of HIT is highly important to realise the dream of a future healthcare system with each customer having secure, private Electronic Health Record (EHR) that is available whenever and wherever needed, enabling the highest degree of coordinated medical care based on the latest medical knowledge and evidence. Arguably, the paper reviews barriers to HIT from organisations’ alignment in respect to the leadership; with their stated values when accepting or willingness to consider the HIT as a determinant factor on their decision-making processes. However, the review concludes that there are many aspects of the organisational accountability and readiness to agree to the technology implementation.

Evaluation of resources to support production of high quality health information for patients and the public. Final report for NHS Research Outputs Programme

Durbin, J., Urquhart, C. & Yeoman, A. (2003). Evaluation of resources to support production of high quality health information for patients and the public. Final report for NHS Research Outputs Programme. Aberystwyth: Department of Information Studies, University of Wales Aberystwyth. Sponsorship: Department of Health

Addressing online information needs in palliative care : an action research-inspired approach

Whereas user participation has been embraced worldwide as a means to provide better patient outcomes, the implementation of formative, action research approaches in online health information has remained under-explored. The purpose of this study is to present an action research-based methodology that allows the scoping of health information and design needs in complex, multi-user online environments. The project's four main stages were informed by an iterative, formative approach involving continuous expert and user evaluation. The study suggests that an action research-inspired formative approach can be successfully employed to generate user-participation. Moreover, sustained user-participation effectively addresses most quality issues regarding content, language, and accessibility raised in the recent literature. The paper concludes that an action research approach geared to develop online health resources deserves more attention.

Presenting evidence-based health information for people with multiple sclerosis : the IN-DEEP project protocol

Background - Increasingly, evidence-based health information, in particular evidence from systematic reviews, is being made available to lay audiences, in addition to health professionals. Research efforts have focused on different formats for the lay presentation of health information. However, there is a paucity of data on how patients integrate evidence-based health information with other factors such as their preferences for information and experiences with information-seeking. The aim of this project is to explore how people with multiple sclerosis (MS) integrate health information with their needs, experiences, preferences and values and how these factors can be incorporated into an online resource of evidence-based health information provision for people with MS and their families.

Methods - This project is an Australian-Italian collaboration between researchers, MS societies and people with MS. Using a four-stage mixed methods design, a model will be developed for presenting evidence-based health information on the Internet for people with MS and their families. This evidence-based health information will draw upon systematic reviews of MS interventions from The Cochrane Library. Each stage of the project will build on the last. After conducting focus groups with people with MS and their family members (Stage 1), we will develop a model for summarising and presenting Cochrane MS reviews that is integrated with supporting information to aid understanding and decision making. This will be reviewed and finalised with people with MS, family members, health professionals and MS Society staff (Stage 2), before being uploaded to the Internet and evaluated (Stages 3 and 4).

Discussion - This project aims to produce accessible and meaningful evidence-based health information about MS for use in the varied decision making and management situations people encounter in everyday life. It is expected that the findings will be relevant to broader efforts to provide evidence-based health information for patients and the general public. The international collaboration also permits exploration of cultural differences that could inform international practice.

Trends in health information seeking among cancer and non-cancer adults between 2003 and 2005: A descriptive analysis of Health Information National Trends Survey (HINTS) data

Cancer is the second leading cause of death in the United States. With the advent of new technologies, changes in health care delivery, and multiplicity of provider types that patients must see, cancer care management has become increasingly complex. The availability of cancer health information has been shown to help cancer patients cope with the management and effects of their cancers. As a result, more cancer patients are using the internet to find resources that can aid in decision-making and recovery. ^ The Health Information National Trends Survey (HINTS) is a nationally representative survey designed to collect information about the experiences of cancer and non-cancer adults with health information sources. The HINTS survey focused on both conventional sources as well as newer technologies, particularly the internet. This study is a descriptive analysis of the HINTS 2003 and HINTS 2005 survey data. The purpose of the research is to explore the general trends in health information seeking and use by US adults, and especially by cancer patients. ^ From 2003 to 2005, internet use for various health-related activities appears to have increased among adults with and without cancer. Differences were found between the groups in the general trust in information media, particularly the internet. Non-cancer respondents tended to have greater trust in information media than cancer respondents. ^ The latter portion of this work examined characteristics of HINTS respondents that were thought to be relevant to how much trust individuals placed in the internet as a source of health information. Trust in health information from the internet was significantly greater among younger adults, higher-earning households, internet users, online seekers of health or cancer information, and those who found online cancer information useful. ^