Quality and readability of information materials for people with brain tumours and their families

Written information is commonly used to inform patients about their disease and treatment, but must be evidence-based and understandable to be useful. This study assessed the quality of the content and the readability of information brochures for people affected by brain tumours. We randomly selected 18 publicly available brochures. Brochures were assessed by criteria to assess the quality of content using the DISCERN instrument. Readability was tested using three commonly used formulas, which yield the reading grade level required to comprehend the brochure (sixth grade level recommended). The mean overall DISCERN score was 3.17 out of a maximum of 5 (moderate quality); only one achieved a rating greater than 4 (high quality). Only one brochure met the sixth grade readability criteria. Although brochures may have accurate content, few satisfied all of the recommended criteria to evaluate their content. Existing brochures need to be critically reviewed and simplified, consumer-focused brochures produced.

Health professionals’ perspectives on information provision for patients with brain tumours and their families

A significant number of patients diagnosed with primary brain tumours report unmet information needs. Using concept mapping methodology, this study aimed to identify strategies for improving information provision, and to describe factors that health professionals understood to influence their provision of information to patients with brain tumours and their families. Concept mapping is a mixed methods approach that uses statistical methods to represent participants’ perceived relationships between elements as conceptual maps. These maps, and results of associated data collection and analyses, are used to extract concepts involved in information provision to these patients. Thirty health professionals working across a range of neuro-oncology roles and settings participated in the concept mapping process. Participants rated a care coordinator as the most important strategy for improving brain tumour care, with psychological support as a whole rated as the most important element of care. Five major themes were identified as facilitating information provision: health professionals’ communication skills, style and attitudes; patients’ needs and preferences; perceptions of patients’ need for protection and initiative; rapport and continuity between patients and health professionals; and the nature of the health care system. Overall, health professionals conceptualised information provision as ‘individualised’, dependent on these interconnected personal and environmental factors.

Exploiting SNOMED CT concepts and relationships for clinical information retrieval : Australian e-Health Research Centre and Queensland University of Technology at the TREC 2012 Medical Track

The Australian e-Health Research Centre and Queensland University of Technology recently participated in the TREC 2012 Medical Records Track. This paper reports on our methods, results and experience using an approach that exploits the concept and inter-concept relationships defined in the SNOMED CT medical ontology. Our concept-based approach is intended to overcome specific challenges in searching medical records, namely vocabulary mismatch and granularity mismatch. Queries and documents are transformed from their term-based originals into medical concepts as defined by the SNOMED CT ontology, this is done to tackle vocabulary mismatch. In addition, we make use of the SNOMED CT parent-child `is-a' relationships between concepts to weight documents that contained concept subsumed by the query concepts; this is done to tackle the problem of granularity mismatch. Finally, we experiment with other SNOMED CT relationships besides the is-a relationship to weight concepts related to query concepts. Results show our concept-based approach performed significantly above the median in all four performance metrics. Further improvements are achieved by the incorporation of weighting subsumed concepts, overall leading to improvement above the median of 28% infAP, 10% infNDCG, 12% R-prec and 7% Prec@10. The incorporation of other relations besides is-a demonstrated mixed results, more research is required to determined which SNOMED CT relationships are best employed when weighting related concepts.

Overdue choices : how information and role in decision-making influence women's preferences for induction for prolonged pregnancy

Background: Enabling women to make informed decisions is a crucial component of consumer-focused maternity care. Current evidence suggests that health care practitioners’ communication of care options may not facilitate patient involvement in decision-making. The aim of this study was to investigate the effect of specific variations in health caregiver communication on women’s preferences for induction of labor for prolonged pregnancy. Methods: A convenience sample of 595 female participants read a hypothetical scenario in which an obstetrician discusses induction of labor with a pregnant woman. Information provided on induction and the degree of encouragement for the woman’s involvement in decision-making was manipulated to create four experimental conditions. Participants indicated preference with respect to induction, their perceptions of the quality of information received, and other potential moderating factors. Results: Participants who received information that was directive in favor of medical intervention were significantly more likely to prefer induction than those given nondirective information. No effect of level of involvement in decision-making was found. Participants’ general trust in doctors moderated the relationship between health caregiver communication and preferences for induction, such that the influence of information provided on preferences for induction differed across levels of involvement in decision-making for women with a low trust in doctors, but not for those with high trust. Many women were not aware of the level of information required to make an informed decision. Conclusions: Our findings highlight the potential value of strategies such as patient decision aids and health care professional education to improve the quality of information available to women and their capacity for informed decision-making during pregnancy and birth. (BIRTH 39:3 September 2012)

Consumer product-related injuries in Queensland children : A snapshot of current problem areas for potential action

This report presents a snapshot from work which was funded by the Queensland Injury Prevention Council in 2010-11 titled “Feasibility of Using Health Data Sources to Inform Product Safety Surveillance in Queensland children”. The project provided an evaluation of the current available evidence-base for identification and surveillance of product-related injuries in children in Queensland and Australia. A comprehensive 300 page report was produced (available at: http://eprints.qut.edu.au/46518/) and a series of recommendations were made which proposed: improvements in the product safety data system, increased utilisation of health data for proactive and reactive surveillance, enhanced collaboration between the health sector and the product safety sector, and improved ability of health data to meet the needs of product safety surveillance. At the conclusion of the project, a Consumer Product Injury Research Advisory group (CPIRAG) was established as a working party to the Queensland Injury Prevention Council (QIPC), to prioritise and advance these recommendations and to work collaboratively with key stakeholders to promote the role of injury data to support product safety policy decisions at the Queensland and national level. This group continues to meet monthly and is comprised of the organisations represented on the second page of this report. One of the key priorities of the CPIRAG group for 2012 was to produce a snapshot report to highlight problem areas for potential action arising out of the larger report. Subsequent funding to write this snapshot report was provided by the Institute for Health and Biomedical Innovation, Injury Prevention and Rehabilitation Domain at QUT in 2012. This work was undertaken by Dr Kirsten McKenzie and researchers from QUT's Centre for Accident Research and Road Safety - Queensland. This snapshot report provides an evidence base for potential further action on a range of children’s products that are significantly represented in injury data. Further information regarding injury hazards, safety advice and regulatory responses are available on the Office of Fair Trading (OFT) Queensland website and the Product Safety Australia websites. Links to these resources are provided for each product reviewed.

Health informatics domain knowledge analysis : an information technology perspective

Health Informatics is an intersection of information technology, several disciplines of medicine and health care. It sits at the common frontiers of health care services including patient centric, processes driven and procedural centric care. From the information technology perspective it can be viewed as computer application in medical and/or health processes for delivering better health care solutions. In spite of the exaggerated hype, this field is having a major impact in health care solutions, in particular health care deliveries, decision making, medical devices and allied health care industries. It also affords enormous research opportunities for new methodological development. Despite the obvious connections between Medical Informatics, Nursing Informatics and Health Informatics, most of the methodologies and approaches used in Health Informatics have so far originated from health system management, care aspects and medical diagnostic. This paper explores reasoning for domain knowledge analysis that would establish Health Informatics as a domain and recognised as an intellectual discipline in its own right.

Practical issues when designing an information accountability framework for eHealth systems

This thesis is the result of an investigation into information privacy management in eHealth. It explores the applicability of accountability measures as a means of protection of eHealth consumer privacy. The thesis presented a new concept of Accountable eHealth Systems for achieving a balance between the information privacy concerns of eHealth consumers and the information access requirements of healthcare professionals and explored the social, technological and implementation aspects involved in such a system.

Retrieval of health advice on the web: AEHRC at ShARe/CLEF eHealth Evaluation Lab Task 3

This paper details the participation of the Australian e- Health Research Centre (AEHRC) in the ShARe/CLEF 2013 eHealth Evaluation Lab { Task 3. This task aims to evaluate the use of information retrieval (IR) systems to aid consumers (e.g. patients and their relatives) in seeking health advice on the Web. Our submissions to the ShARe/CLEF challenge are based on language models generated from the web corpus provided by the organisers. Our baseline system is a standard Dirichlet smoothed language model. We enhance the baseline by identifying and correcting spelling mistakes in queries, as well as expanding acronyms using AEHRC's Medtex medical text analysis platform. We then consider the readability and the authoritativeness of web pages to further enhance the quality of the document ranking. Measures of readability are integrated in the language models used for retrieval via prior probabilities. Prior probabilities are also used to encode authoritativeness information derived from a list of top-100 consumer health websites. Empirical results show that correcting spelling mistakes and expanding acronyms found in queries signi cantly improves the e ectiveness of the language model baseline. Readability priors seem to increase retrieval e ectiveness for graded relevance at early ranks (nDCG@5, but not precision), but no improvements are found at later ranks and when considering binary relevance. The authoritativeness prior does not appear to provide retrieval gains over the baseline: this is likely to be because of the small overlap between websites in the corpus and those in the top-100 consumer-health websites we acquired.

Consumer created reviews and ratings : the importance of word of mouth in information search

This study explored the creation, dissemination and exchange of electronic word of mouth, in the form of product reviews and ratings of digital technology products. Based on 43 in-depth interviews and 500 responses to an online survey, it reveals a new communication model describing consumers' info-active and info-passive information search styles. The study delivers an in-depth understanding of consumers' attitudes towards current advertising tools and user-generated content, and points to new marketing techniques emerging in the online environment.

Consumer acceptance of Accountable-eHealth systems

In this paper, we present the results of a survey conducted to measure the attitudes of the consumers of eHealth towards Accountable-eHealth systems which are designed for information privacy management. A research model is developed that can identify the factors contributing to system acceptance and is validated using quantitative data from 187 completed survey responses from university students studying non-health related courses at a university in Queensland, Australia. The research model is validated using structural equation modelling and can be used to identify how specific characteristics of Accountable-eHealth systems would affect their overall acceptance by future eHealth consumers.

What women want : qualitative analysis of consumer evaluations of maternity care in Queensland, Australia

Background Maternity care reform plans have been proposed at state and national levels in Australia, but the extent to which these respond to maternity care consumers’ expressed needs is unclear. This study examines open-text survey comments to identify women’s unmet needs and priorities for maternity care. It is then considered whether these needs and priorities are addressed in current reform plans. Methods Women who had a live single or multiple birth in Queensland, Australia, in 2010 (n 3,635) were invited to complete a retrospective self-report survey. In addition to questions about clinical and interpersonal maternity care experiences from pregnancy to postpartum, women were asked an open-ended question “Is there anything else you’d like to tell us about having your baby?” This paper describes a detailed thematic analysis of open-ended responses from a random selection of 150 women (10% of 1,510 who responded to the question). Results Four broad themes emerged relevant to improving women’s experiences of maternity care: quality of care (interpersonal and technical); access to choices and involvement in decision-making; unmet information needs; and dissatisfaction with the care environment. Some of these topics are reflected in current reform goals, while others provide evidence of the need for further reforms. Conclusions The findings reinforce the importance of some existing maternity reform objectives, and describe how these might best be met. Findings affirm the importance of information provision to enable informed choices; a goal of Queensland and national reform agendas. Improvement opportunities not currently specified in reform agendas were also identified, including the quality of interpersonal relationships between women and staff, particular unmet information needs (e.g., breastfeeding), and concerns regarding the care environment (e.g., crowding and long waiting times).

Just what the doctor ordered? Investigating the impact of health service quality on consumer misbehaviour

The growth in demand and expenditure currently being experienced in the Australian health sector is also accompanied by a rise in dysfunctional customer behaviour, such as verbal abuse and physical violence, perpetrated against health service providers. While service failure and poor recovery are known to trigger consumer misbehaviour, this study investigates whether lower than expected perceived service quality generates cognitive and emotional appraisals that trigger two common forms of misbehaviour: refusal to participate and verbal abuse. Data were collected using a 2 × 2 between-subjects experiment administered via online written survey and analysed using path modelling. The findings indicate that perceptions of service encounter quality have an indirect effect on whether consumers refuse to participate in the service and/or verbally abuse the service provider through the mediating effect of anger.

The effectiveness of communication interventions in providing older people with information on access to in-home health and social care services: A systematic review protocol

The objective of this review is to locate, critically appraise and synthesize evidence on the effectiveness of communication strategies for providing older people access to information regarding in-home health and social care services. The review question is: What is the effectiveness of communication interventions in providing older people with information about in-home health and social care services?