The security and privacy of usage policies and provenance logs in an Information Accountability Framework

The potential benefits of shared eHealth records systems are promising for the future of improved healthcare. However, the uptake of such systems is hindered by concerns over the security and privacy of patient information. The use of Information Accountability and so called Accountable-eHealth (AeH) systems has been proposed to balance the privacy concerns of patients with the information needs of healthcare professionals. However, a number of challenges remain before AeH systems can become a reality. Among these is the need to protect the information stored in the usage policies and provenance logs used by AeH systems to define appropriate use of information and hold users accountable for their actions. In this paper, we discuss the privacy and security issues surrounding these accountability mechanisms, define valid access to the information they contain, discuss solutions to protect them, and verify and model an implementation of the access requirements as part of an Information Accountability Framework.

The effectiveness of information-sharing interventions to reduce anxiety in families waiting for surgical patients undergoing an elective surgical procedure: A systematic review

Background Whilst waiting for patients undergoing surgery, a lack of information regarding the patient’s status and the outcome of surgery, can contribute to the anxiety experienced by family members. Effective strategies for providing information to families are therefore required. Objectives To synthesize the best available evidence in relation to the most effective information-sharing interventions to reduce anxiety for families waiting for patients undergoing an elective surgical procedure. Inclusion criteria Types of participants All studies of family members over 18 years of age waiting for patients undergoing an elective surgical procedure were included, including those waiting for both adult and pediatric patients.   Types of intervention All information-sharing interventions for families of patients undergoing an elective surgical procedure were eligible for inclusion in the review. Types of studies All randomized controlled trials (RCTs) quasi-experimental studies, case-controlled and descriptive studies, comparing one information-sharing intervention to another or to usual care were eligible for inclusion in the review. Types of outcomes Primary outcome: The level of anxiety amongst family members or close relatives whilst waiting for patients undergoing surgery, as measured by a validated instrument such as the S-Anxiety portion of the State-Trait Anxiety Inventory (STAI). Secondary outcomes: Family satisfaction and other measurements that may be considered indicators of stress and anxiety, such as mean arterial pressure (MAP) and heart rate. Search strategy A comprehensive search, restricted to English language only, was undertaken of the following databases from 1990 to May 2013: Medline, CINAHL, EMBASE, ProQuest, Web of Science, PsycINFO, Scopus, Dissertation and Theses PQDT (via ProQuest), Current Contents, CENTRAL, Google Scholar, OpenGrey, Clinical Trials, Science.gov, Current Controlled Trials and National Institute for Clinical Studies (NHMRC). Methodological quality Two independent reviewers critically appraised retrieved papers for methodological quality using the standardized critical appraisal instruments for randomized controlled trials and descriptive studies from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instruments (JBI-MAStARI). Data extraction Two independent reviewers extracted data from included papers using a customized data extraction form. Data synthesis Statistical pooling was not possible, mainly due to issues with data reporting in two of the studies, therefore the results are presented in narrative form. Results Three studies with a total of 357 participants were included in the review. In-person reporting to family members was found to be effective in comparison with usual care in which no reports were provided. Telephone reporting was also found to be effective at reducing anxiety, in comparison with usual care, although not as effective as in-person reporting. The use of paging devices to keep family members informed were found to increase, rather than decrease anxiety. Conclusions Due to the lack of high quality research in this area, the strength of the conclusions are limited. It appears that in-person and telephone reporting to family members decreases anxiety, however the use of paging devices increases anxiety.

Systematic review of interventions to improve the provision of information for adults with primary brain tumors and their caregivers

Background: Adults with primary brain tumors and their caregivers have significant information needs. This review assessed the effect of interventions to improve information provision for adult primary brain tumor patients and/or their caregivers. Methods: We included randomized or nonrandomized trials testing educational interventions that had outcomes of information provision, knowledge, understanding, recall, or satisfaction with the intervention, for adults diagnosed with primary brain tumors and/or their family or caregivers. PubMed, MEDLINE, EMBASE and Cochrane Reviews databases were searched for studies published between 1980 and June 2014. Results: Two randomized controlled, one non-randomized controlled, and 10 single group pre-post trials enrolled more than 411 participants. Five group, four practice/process change and four individual interventions assessed satisfaction (12 studies), knowledge (four studies) or information provision (2 studies). Nine studies reported high rates of satisfaction. Three studies showed statistically significant improvements over time in knowledge and two showed greater information was provided to intervention than control group participants, although statistical testing was not performed. Discussion: The trials assessed intermediate outcomes such as satisfaction, and only 4/13 reported on knowledge improvements. Few trials had a randomized controlled design and risk of bias was either evident or could not be assessed in most domains.

Diagnose this if you can: On the effectiveness of search engines in finding medical self-diagnosis information

An increasing amount of people seek health advice on the web using search engines; this poses challenging problems for current search technologies. In this paper we report an initial study of the effectiveness of current search engines in retrieving relevant information for diagnostic medical circumlocutory queries, i.e., queries that are issued by people seeking information about their health condition using a description of the symptoms they observes (e.g. hives all over body) rather than the medical term (e.g. urticaria). This type of queries frequently happens when people are unfamiliar with a domain or language and they are common among health information seekers attempting to self-diagnose or self-treat themselves. Our analysis reveals that current search engines are not equipped to effectively satisfy such information needs; this can have potential harmful outcomes on people’s health. Our results advocate for more research in developing information retrieval methods to support such complex information needs.

A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services

Objective People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people’s needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Methods Queensland pancreatic or ampullary cancer patients (n=136, 54% of those eligible) completed a survey which assessed 34 needs across 5 domains (SCNS-SF34) and use of health services. Differences by resection were compared with Chi-squared tests. Results Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs whereas, health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included ‘not being able to do things they used to do’ (41%), ‘concerns about the worries of those close’ (37%), and ‘uncertainty about the future’ (30%). Patients with non-resectable disease reported greater individual information needs but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Conclusion Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.

The security and privacy of usage policies and provenance logs in an Information Accountability Framework

The potential benefits of shared eHealth records systems are promising for the future of improved healthcare. However, the uptake of such systems is hindered by concerns over the security and privacy of patient information. The use of Information Accountability and so called Accountable-eHealth (AeH) systems has been proposed to balance the privacy concerns of patients with the information needs of healthcare professionals. However, a number of challenges remain before AeH systems can become a reality. Among these is the need to protect the information stored in the usage policies and provenance logs used by AeH systems to define appropriate use of information and hold users accountable for their actions. In this paper, we discuss the privacy and security issues surrounding these accountability mechanisms, define valid access to the information they contain, discuss solutions to protect them, and verify and model an implementation of the access requirements as part of an Information Accountability Framework.

Medicines information sources and services for consumers : A special focus on the Internet and people with depression

The range of consumer health and medicines information sources has diversified along with the increased use of the Internet. This has led to a drive to develop medicines information services and to better incorporate the Internet and e-mail into routine practice in health care and in community pharmacies. To support the development of such services more information is needed about the use of online information by consumers, particularly of those who may be the most likely to use and to benefit from the new sources and modes of medicines communication. This study explored the role and utilization of the Internet-based medicines information and information services in the context of a wider network of information sources accessible to the public in Finland. The overall aim was to gather information to develop better and more accessible sources of information for consumers and services to better meet the needs of consumers. Special focus was on the needs and information behavior among people with depression and using antidepressant medicines. This study applied both qualitative and quantitative methods. Consumer medicines information needs and sources were identified by analyzing the utilization of the University Pharmacy operated national drug information call center (Study I) and surveying Finnish adults (n=2348) use of the different medicines information sources (Study II). The utilization of the Internet as a source of antidepressant information among people with depression was explored by focus group discussions among people with depression and with current or past use of the antidepressant(s) (n=29, Studies III & IV). Pharmacy response to the needs of consumers in term of providing e-mail counseling was assessed by conducting a virtual pseudo customer study among the Finnish community pharmacies (n=161, Study V). Physicians and pharmacists were the primary sources of medicines information. People with mental disorders were more frequent users of telephone- and Internet-based medicines information sources and patient information leaflets than people without mental disorders. These sources were used to complement rather than replace information provided face-to-face by health professionals. People with depression used the Internet to seek facts about antidepressants, to share experiences with peers, and for the curiosity. They described that the access to online drug information was empowering. Some people reported lacking the skills necessary to assess the quality of online information. E-mail medication counseling services provided by community pharmacies were rare and varied in quality. Study results suggest that rather than discouraging the use of the Internet, health professionals should direct patients to use accurate and reliable sources of online medicines information. Health care providers, including community pharmacies should also seek to develop new ways of communicating information about medicines with consumers. This study determined that people with depression and using antidepressants need services enabling interactive communication not only with health care professionals, but also with peers. Further research should be focused on developing medicines information service facilitating communication among different patient and consumer groups.

Choosing a model of maternity care: decision support needs of Australian women

- BACKGROUND Access to information on the features and outcomes associated with the various models of maternity care available in Australia is vital for women's informed decision-making. This study sought to identify women's preferences for information access and decision-making involvement, as well as their priority information needs, for model of care decision-making. - METHODS A convenience sample of adult women of childbearing age in Queensland, Australia were recruited to complete an online survey assessing their model of care decision support needs. Knowledge on models of care and socio-demographic characteristics were also assessed. - RESULTS Altogether, 641 women provided usable survey data. Of these women, 26.7 percent had heard of all available models of care before starting the survey. Most women wanted access to information on models of care (90.4%) and an active role in decision-making (99.0%). Nine priority information needs were identified: cost, access to choice of mode of birth and care provider, after hours provider contact, continuity of carer in labor/birth, mobility during labor, discussion of the pros/cons of medical procedures, rates of skin-to-skin contact after birth, and availability at a preferred birth location. This information encompassed the priority needs of women across age, birth history, and insurance status subgroups. - CONCLUSIONS This study demonstrates Australian women's unmet needs for information that supports them to effectively compare available options for model of maternity care. Findings provide clear direction on what information should be prioritized and ideal channels for information access to support quality decision-making in practice.

Systematic review of interventions to improve the provision of information for adults with primary brain tumours and their caregivers

Background: Adults with primary brain tumors and their caregivers have significant information needs. This review assessed the effect of interventions to improve information provision for adult primary brain tumor patients and/or their caregivers. Methods: We included randomized or nonrandomized trials testing educational interventions that had outcomes of information provision, knowledge, understanding, recall, or satisfaction with the intervention, for adults diagnosed with primary brain tumors and/or their family or caregivers. PubMed, MEDLINE, EMBASE and Cochrane Reviews databases were searched for studies published between 1980 and June 2014. Results: Two randomized controlled, one non-randomized controlled, and 10 single group pre-post trials enrolled more than 411 participants. Five group, four practice/process change and four individual interventions assessed satisfaction (12 studies), knowledge (four studies) or information provision (2 studies). Nine studies reported high rates of satisfaction. Three studies showed statistically significant improvements over time in knowledge and two showed greater information was provided to intervention than control group participants, although statistical testing was not performed. Discussion: The trials assessed intermediate outcomes such as satisfaction, and only 4/13 reported on knowledge improvements. Few trials had a randomized controlled design and risk of bias was either evident or could not be assessed in most domains.

Exploring use of climate information for optimal design of water resources infrastructure

We conducted surveys of fire and fuels managers at local, regional, and national levels to gain insights into decision processes and information flows in wildfire management. Survey results in the form of fire managers’ decision calendars show how climate information needs vary seasonally, over space, and through the organizational network, and help determine optimal points for introducing climate information and forecasts into decision processes. We identified opportunities to use climate information in fire management, including seasonal to interannual climate forecasts at all organizational levels, to improve the targeting of fuels treatments and prescribed burns, the positioning and movement of initial attack resources, and staffing and budgeting decisions. Longer-term (5–10 years) outlooks also could be useful at the national level in setting budget and research priorities. We discuss these opportunities and examine the kinds of organizational changes that could facilitate effective use of existing climate information and climate forecast capabilities.

Information Access Surveys (IAS)

What is an Information Access Survey? An Information Access Survey is a tool that: • Identifies key issues about people and what information needs they have • Identifies what media sources are available, what strategies people use to get information and finds out how cost-effective these are • Recommends methods of communication that are useful for poor rural communities who use aquatic resources to improve their livelihoods (Pdf contains 4 pages).

Information and knowledge sharing

The Guidelines provide a special focus on information and knowledge sharing and its current and potential role in supporting implementation of the Code of Conduct for Responsible Fisheries. They expand on relevant principles and standards set forth in the Code and make practical suggestions about ways to ensure that this role can be enhanced. The issues involved in the flow of information between different stakeholder groups include topics as diverse as information policy frameworks and information and communication technology infrastructure, hence coverage is introductory. Some of the constraints involved in the cycle from the creation, production, dissemination and availability of information and knowledge to its effective use and sharing by the present generation as well as its preservation for the future are presented. The special circumstances and requirements of stakeholders in developing countries are recognized in accordance with Article 5 of the Code. A separate chapter on small-scale fisheries and aquaculture looks in more detail at the special situation and information needs of the sub-sector. The Guidelines aim to foster a better understanding of the issues involved to ensure that stakeholders obtain the essential information that they need and that they make available their own information and knowledge for the public good. (PDF contains 115 pages)

Mesophotic coral ecosystems research strategy: international workshop to prioritize research and management needs for mesophotic coral ecosystems, Jupiter, Florida, 12-15 July 2008

On July 12-15, 2008, researchers and resource managers met in Jupiter, Florida to discuss and review the state of knowledge regarding mesophotic coral ecosystems, develop a working definition for these ecosystems, identify critical resource management information needs, and develop a Mesophotic Coral Ecosystems Research Strategy to assist the U.S. National Oceanic and Atmospheric Administration (NOAA) and other agencies and institutions in their research prioritization and strategic planning for mesophotic coral ecosystems. Workshop participants included representatives from international, Federal, and state governments; academia; and nongovernmental organizations. The Mesophotic Coral Ecosystems Workshop was hosted by the Perry Institute for Marine Science (PIMS) and organized by NOAA and the U.S. Geological Survey (USGS). The workshop goals, objectives, schedule, and products were governed by a Steering Committee consisting of members from NOAA (National Centers for Coastal Ocean Science’s Center for Sponsored Coastal Ocean Research, the Office of Ocean Exploration and Research’s NOAA Undersea Research Program, and the National Marine Fisheries Service), USGS, PIMS, the Caribbean Coral Reef Institute, and the Bishop Museum.

Introduction to logical information systems

Ridoux, O. and Ferr?, S. (2004) Introduction to logical information systems. Information Processing & Management, 40 (3), 383-419. Elsevier