Information In Health Care Settings Research Articles

Improving health equity: Evaluation of accessible written medication information for patients with visual impairment

BackgroundCurrently, there are limited options for patients with visual impairment or blindness to obtain accessible written medication information. ObjectivesThe objectives of this study were to determine the availability of accessible medication guides provided by the manufacturer and identify common barriers reported by patients with visual impairment in obtaining accessible written medication information in health care settings. DesignProspective, cross-sectional study. Setting and participantsParticipants of the survey portion included individuals with visual impairment who were administered an online questionnaire. Outcome measuresAvailability of accessible medication guides as verified by 39 manufacturers and accessibility assessed using a checklist based on revised Section 508 guidelines and testing with a screen reader for accessibility. To identify barriers in obtaining written medication information, respondents were recruited by Qualtrics to fill out an anonymous, online 13-question survey from September to October 2022. ResultsAll manufacturers did not provide an accessible medication guide or an alternative format. Common errors found by the screen reader were lack of a description for images (alternative text) and headings were not available to help with navigation. As for the survey, a total of 699 participants responded. The median age was 35 years and 49% of respondents were female. A paper copy was the most common format (38%) provided in the pharmacy and barriers identified included lack of Braille or electronic options and personnel not equipped to serve patients with visual impairment. ConclusionWith the lack of accessible written medication information as a barrier to health equity, pharmacists and manufacturers need to provide alternative formats such as audio, electronic formats, or Braille to patients with visual impairment.

Adolescents with Epilepsy: Special Consideration for Teens with Epilepsy, Prevention of Injuries and Nurses Role

It is well recognized that young individuals with neurological impairments such as epilepsy receive less suitable assistance than young people with other chronic diseases. The period between the ages of 13 and 19 surrounding the transition to adult services is particularly crucial for promoting young peoples continued control and self-care. Epilepsy-specific biological psychosocial and biological variables can both hinder and facilitate the sharing of information and the development of self-care behaviors. The goals of the present review were to explain how young people with epilepsy aged 13 to 19 years and their parents experienced sharing information in healthcare settings to identify characteristics that affect both good and negative healthcare communication and identify what is known to be beneficial in doing so. Seizures which are frequent bursts of electrical activity in the brain are brought on by epilepsy. By the time they are adolescents almost two-thirds of all children with epilepsy outgrow their seizures. Epilepsy however maybe a lifelong condition for certain people. To better comprehend their childs condition and treatment parents should work together with their medical professionals.

Stopping the Spread? Enhancing Legal Frameworks for the Protection of Personal Information in the Context of COVID-19 Contact Tracing

Personal privacy versus public safety is a rights trade-off that has been brought into sharp focus by the COVID-19 pandemic, with flow-on implications for the success of contract tracing regimes implemented across Australia. These contact tracing regimes depend upon the supply of accurate information by individuals, which in turn depends upon the trust that is placed in health authorities and other government officials to handle personal information with care. A range of different laws govern the collection and use of personal information by health authorities at the federal level and in each Australian state or territory. Understanding these rules might help us to work out ways to ensure that everyone in our community feels like they can tell the truth when it matters most. Using a case study from South Australia, this article reviews existing legislative, regulatory and policy frameworks that currently apply to the collection and use of personal information in health care and highlights the tension between creating incentives to share personal information and policing compliance with COVID-19 laws and ensuring robust legal protection for sensitive personal information. Relevant lessons from the South Australian experience are then extrapolated for consideration by other Australian jurisdictions, with a view to identifying what safeguards and protections could be included in current legal frameworks governing the use, sharing and disclosure of personal information in health care settings to help resolve the current tension between protecting individual privacy and promoting public health.

Human Genetics Society of Australasia Position Statement: Use of Human Genetic and Genomic Information in Healthcare Settings

Human genetic and genomic information (HGI) is being generated, utilized and accessed across a wide range of healthcare settings. While traditionally clinical genetics services have maintained guardianship and enforced rigid protections of human genetic information, this is no longer practical or feasible as genetic knowledge continues to evolve, expand and inform various aspects of healthcare. Today, many healthcare professionals of varied backgrounds and areas of expertise are looking to genetic and genomic information to screen and/or diagnose genetic conditions and to guide medical management and treatment options. This position statement provides guidance for all healthcare professionals who may be handling human genetic and/or genomic information as part of their practice and outlines considerations relevant to protection, storage, access and sharing of HGI in Australasia. Illustrative cases are used to highlight various sensitivities of genetic and genomic information and challenges these may pose in modern healthcare settings. In essence, this position statement seeks to highlight and advocate for both individual interests as well as the interests of the broader family network.

Evaluation of a social determinants of health screening questionnaire and workflow pilot within an adult ambulatory clinic

BackgroundThere is increased recognition in clinical settings of the importance of documenting, understanding, and addressing patients’ social determinants of health (SDOH) to improve health and address health inequities. This study evaluated a pilot of a standardized SDOH screening questionnaire and workflow in an ambulatory clinic within a large integrated health network in Northern California.MethodsThe pilot screened for SDOH needs using an 11-question Epic-compatible paper questionnaire assessing eight SDOH and health behavior domains: financial resource, transportation, stress, depression, intimate partner violence, social connections, physical activity, and alcohol consumption. Eligible patients for the pilot receiving a Medicare wellness, adult annual, or new patient visits during a five-week period (February-March, 2020), and a comparison group from the same time period in 2019 were identified. Sociodemographic data (age, sex, race/ethnicity, and payment type), visit type, length of visit, and responses to SDOH questions were extracted from electronic health records, and a staff experience survey was administered. The evaluation was guided by the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework.ResultsTwo-hundred eighty-nine patients were eligible for SDOH screening. Responsiveness by domain ranged from 55 to 67%, except for depression. Half of patients had at least one identified social need, the most common being stress (33%), physical activity (22%), alcohol (12%), and social connections (6%). Physical activity needs were identified more in females (81% vs. 19% in males, p < .01) and at new patient/transfer visits (48% vs. 13% at Medicare wellness and 38% at adult wellness visits, p < .05). Average length of visit was 39.8 min, which was 1.7 min longer than that in 2019. Visit lengths were longer among patients 65+ (43.4 min) and patients having public insurance (43.6 min). Most staff agreed that collecting SDOH data was relevant and accepted the SDOH questionnaire and workflow but highlighted opportunities for improvement in training and connecting patients to resources.ConclusionUse of evidence-based SDOH screening questions and associated workflow was effective in gathering patient SDOH information and identifying social needs in an ambulatory setting. Future studies should use qualitative data to understand patient and staff experiences with collecting SDOH information in healthcare settings.

Potential harms associated with routine collection of patient sociodemographic information: A rapid review.

BackgroundHealth systems are recommended to capture routine patient sociodemographic data as a key step in providing equitable person‐centred care. However, collection of this information has the potential to cause harm, especially for vulnerable or potentially disadvantaged patients.ObjectiveTo identify harms perceived or experienced by patients, their families, or health‐care providers from collection of sociodemographic information during routine health‐care visits and to identify best practices for when, by whom and how to collect this information.Search StrategyWe searched OVID MEDLINE, PubMed “related articles” via NLM and healthevidence.org to the end of January 2018 and assessed reference lists and related citations of included studies.Inclusion CriteriaWe included studies reporting on harms of collecting patient sociodemographic information in health‐care settings.Data Extraction and SynthesisData on study characteristics and types of harms were extracted and summarized narratively.Main ResultsEighteen studies were included; 13 provided patient perceptions or experiences with the collection of these data and seven studies reported on provider perceptions. Five reported on patient recommendations for collecting sociodemographic information. Patients and providers reported similar potential harms which were grouped into the following themes: altered behaviour which may affect care‐seeking, data misuse or privacy concerns, discomfort, discrimination, offence or negative reactions, and quality of care. Patients suggested that sociodemographic information be collected face to face by a physician.Discussion and ConclusionsOverall, patients support the collection of sociodemographic information. However, harms are possible, especially for some population subgroups. Harms may be mitigated by providing a rationale for the collection of this information.

Gathering Information in Healthcare Settings: A Tool to Facilitate On-Site Work

The coordination of site visits to execute human factors methods, such as onsite usability tests, interviews, or observations, in clinical settings requires a high level of management to attain successful data collection outcomes. Members of the Department of Veterans Affairs (VA) Veterans Health Administration (VHA) Human Factors Engineering (HFE) team occasionally visit VHA medical centers or outpatient clinics to complete our work. We have developed a site visit checklist as a practice innovation to facilitate logistical coordination when gathering data onsite. This Practice-Oriented paper includes the full checklist, as well as discussion of its use to enable other groups to benefit from lessons we have learned in conducting onsite work in health care settings.

Perceptions regarding utilization of meteorological information in healthcare in Korea: a qualitative study

BackgroundHealth forecasting has been used in an attempt to provide timely and tailored meteorological information to patients and healthcare providers so that they might take appropriate actions to mitigate health risks and manage healthcare-related needs. This study examined the in-depth perceptions of healthcare providers and the general public regarding the utilization of meteorological information in the healthcare system in Korea.MethodsThe COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist was applied to this study. We conducted three focus group discussions in accordance with semi-structured guidelines developed to deal with various aspects of the utilization of meteorological information in healthcare settings. The verbatim transcriptions and field notes were analyzed according to content analysis.ResultsSix physicians, four nurses, three emergency medical technicians, and seven members of the general public participated in the focus group discussions. There were some individual discrepancies among most participants regarding the health effects of climate change. Although several physician participants felt that meteorological information utilization is not a prime concern during patient care, most of the general public participants believed that it should be used in the patient care process. The provision of meteorological information to patients undergoing care is expected to not only improve the effective management of climate-sensitive diseases, but also boost rapport between healthcare providers and patients.ConclusionsMore attempts should be made to provide meteorological information to groups vulnerable to climate change, and the effects of this information should be evaluated in terms of effectiveness and inequality. The findings of this study will be helpful in countries and institutions trying to introduce health forecasting services.

Protocol of a randomized controlled trial of an erythropoietin stimulating agent decision aid for anemia treatment in kidney disease.

BackgroundErythropoiesis-stimulating agents (ESAs) are commonly used for the treatment of anemia due to chronic kidney disease (CKD) and end stage renal disease (ESRD). Patients often lack an understanding of the potential risks and benefits of ESAs, despite government mandated education on this topic. Decision aids are tools commonly used to discuss important information in health care settings. To address this knowledge gap, we designed this study to evaluate the effectiveness of a novel ESA decision aid at promoting informed shared decision making (ISDM) between patients and providers related to ESA use for CKD- and ESRD-related anemia.MethodsUsing the principles of informed shared decision making theory, we designed and piloted an ESA decision aid intended to increase CKD and ESRD patient understanding of the potential risks and benefits of ESAs. Informed by the findings during development, the ESA decision aid was modified and finalized for testing. We will perform a randomized clinical trial to assess if administration of the ESA decision aid improves patient understanding of the risks and benefits of ESA use compared to control patients receiving standard care. Participants with either CKD or ESRD and who are receiving ESAs will be eligible for participation. The primary outcome is patients’ score on the Patient Anemia Knowledge in Kidney Disease (PAKKD) survey assessed at enrollment and 3 months after. Secondary outcomes include decisional conflict related to ESAs, and patient satisfaction with provider communication.DiscussionThe Anemia Risk Communication for patients with Kidney Disease (ARC-KD) study will assess the effectiveness of a novel ESA decision aid to improve patient understanding of ESA use to manage CKD- and ESRD-related anemia. This decision aid is the first resource targeted to improve patient understanding of anemia management in the kidney health context. With the increasing options available for anemia management, this will serve as an important foundation to evolve in the future to optimize anemia-related shared decision making.Trial registrationClinicalTrials.gov, number NCT01992926. Registered 11/14/2013.

Estimation of a recurrent event gap time distribution: an application to morbidity outcomes following lower extremity fracture in Veterans with spinal cord injury

Recurrent event data is frequently encountered in biomedical research. Estimators describing the time to the next event occurrence could be useful information in healthcare settings to deliver targeted, preemptive, patient-specific care. Distribution estimation of recurrence times is varied based on both the underlying assumptions of the estimator (e.g., dependence vs. independence of recurrence times within individual) and estimator construct. In an example among Veterans with spinal cord injury, distributional changes in recurrence times of health complications subsequent lower extremity (LE) fracture are explored. Veterans with LE fracture (cases) were matched to Veterans without LE fracture (controls) on demographic (age, race), level of injury (paraplegia vs. tetraplegia), extent of injury, Veterans Affairs connected service status, and comorbidities using Mahalanobis metric matching. Stratified distributional estimates of recurrence times between successive morbidity outcomes are compared between Veterans with/without LE fracture using three estimators: independent identically distributed product limit estimator, Wang–Chang product limit estimator, and a gamma frailty maximum likelihood estimator. It can be seen that the estimator selection can provide a very different showcasing of a recurrence time distribution. There is a change in the time-to-recurrence of recurrent urinary tract infections and pressure ulcers for fracture cases directly following LE fracture, however testing if this difference is statistically significant remains unclear. Causal inference of gap time analyses in observational data with recurrent events is considered and a call for methods in this area is much warranted.

Using a customized search engine to address low health literacy: a program description

In the provision of health information, it is the structure as much as the content of an information source that can influence a patient's ability to understand and act upon medical guidance. Canada has a commitment to providing equal, quality health care to all citizens, but a barrier to this equality has emerged as health information has gone online. This paper discusses the online information retrieval system in a patient library in a Canadian hospital, the barrier that this system created in connecting patients with health information, and how resources were reorganized to more equitably meet the needs of patients. The example of one information retrieval system provides a new frame through which to evaluate the organization of electronic information in health care settings.

Sociodemographic data collection for health equity measurement: a mixed methods study examining public opinions

Monitoring inequalities in healthcare is increasingly being recognized as a key first step in providing equitable access to quality care. However, the detailed sociodemographic data that are necessary for monitoring are currently not routinely collected from patients in many jurisdictions. We undertook a mixed methods study to generate a more in-depth understanding of public opinion on the collection of patient sociodemographic information in healthcare settings for equity monitoring purposes in Ontario, Canada. The study included a provincial survey of 1,306 Ontarians, and in-depth interviews with a sample of 34 individuals. Forty percent of survey participants disagreed that it was important for information to be collected in healthcare settings for equity monitoring. While there was a high level of support for the collection of language, a relatively large proportion of survey participants felt uncomfortable disclosing household income (67%), sexual orientation (40%) and educational background (38%). Variation in perceived importance and comfort with the collection of various types of information was observed among different survey participant subgroups. Many in-depth interview participants were also unsure of the importance of the collection of sociodemographic information in healthcare settings and expressed concerns related to potential discrimination and misuse of this information. Study findings highlight that there is considerable concern regarding disclosure of such information in healthcare settings among Ontarians and a lack of awareness of its purpose that may impede future collection of such information. These issues point to the need for increased education for the public on the purpose of sociodemographic data collection as a strategy to address this problem, and the use of data collection strategies that reduce discomfort with disclosure in healthcare settings.

Designing written patient information in primary dental care: the right tools for the job

There is a good evidence base in the literature for the use of written patient information in healthcare settings to enable patients to retain information concerning procedures and treatments following initial consultations. A number of tools exist to help in the design of written patient information. These include checklists such as the Department of Health Toolkit for Producing Patient Information, EQIP and DISCERN tools, readability scores such as the Flesch-Kincaid Formula and Flesch Reading Ease score, as well as cultural sensitivity scores. These tools are presented and their possible role in dental primary care discussed. The tools provided here will enable clinicians to develop a better standard of patient information literature concerning procedures and treatments on offer.

Guest Editors' Introduction on eHealth and Services Computing in Healthcare

is often perceived to lag behind other industry sectors in its uptake and adoption of new technology. eHealth is one such technology which includes the areas of Health Informatics, Electronic Medical/Patient Records, Clinical Decision Support, Telehealth. The main purpose of eHealth is to provide better use of information in health care settings, to improve the quality of patient care and the efficiency of clinical processes. Many situations exist where the use of eCommerce principles would be appropriate to establish new eHealth solutions, and these warrant extensive research investigation. Computing has been described as a cross-discipline that covers the science and technology of bridging the gap between Business and IT Services (Site 1). This role is supported by Web services and service-oriented architecture (SOA), business consulting methodology and utilities, business process modelling, transformation and integration. The goal of Computing is to enable IT services and computing technology to perform business services more efficiently and effectively. Opportunities abound for the unique aspects of healthcare to drive fundamental computing and IT research together with leading applied research within the healthcare domain that could potentially be reapplied to areas outside of healthcare. This special issue contains articles addressing eHealth and Computing in from several different perspectives. The first three articles set the scene for research within this domain by focusing on business process modelling within healthcare and e-health, otherwise known as patient flow or patient journey modelling. While many healthcare organisations are utilising Lean Thinking (Site 2) based approaches, these research articles show that improvements can be made to these initiatives through approaches that better support the nuances of healthcare when compared to the retail and manufacturing sectors for example. The first paper entitled An Evaluation Framework for Business Process Modelling Languages in Healthcare coauthored by Amir Afrasiabi Rad, Morad Benyoucef and Craig E. Kuziemsky sets the scene by introducing the healthcare domain, the business processes within it; healthcare's modeling requirements, and challenges of healthcare business process modeling. With this in mind they present the difficulties of modeling complex healthcare processes in a service based environment. They present a set of healthcare modeling requirements and propose an evaluation framework for process modeling languages based on these requirements. This is demonstrated through the evaluation of the suitability of two major process based service composition languages supporting services computing, namely BPEL and WS-CDL. The second paper entitled Using Visual Analytics to Improve Hospital Scheduling and Patient Flow co-authored by Janna Anneke Fitzgerald and Ann Dadich presents an innovative approach to extend the lean thinking approach premised on visual analytics. They demonstrate that this approach can identify areas for improvement without having to make changes to the physical environment through a visual communication mechanism with staff. …

HL7 and DICOM based integration of radiology departments with healthcare enterprise information systems

Purpose Integration based on open standards, in order to achieve communication and information interoperability, is one of the key aspects of modern health care information systems. However, this requirement represents one of the major challenges for the Information and Communication Technology (ICT) solutions, as systems today use diverse technologies, proprietary protocols and communication standards which are often not interoperable. One of the main producers of clinical information in healthcare settings represent Radiology Information Systems (RIS) that communicate using widely adopted DICOM ( Digital Imaging and COmmunications in Medicine) standard, but in very few cases can efficiently integrate information of interest with other systems. In this context we identified HL7 standard as the world's leading medical ICT standard that is envisioned to provide the umbrella for medical data semantic interoperability, which amongst other things represents the cornerstone for the Croatia's National Integrated Healthcare Information System (IHCIS). The aim was to explore the ability to integrate and exchange RIS originated data with Hospital Information Systems based on HL7's CDA ( Clinical Document Architecture) standard. Methods We explored the ability of HL7 CDA specifications and methodology to address the need of RIS integration HL7 based healthcare information systems. Results We introduced the use of WADO service interconnection to IHCIS and finally CDA rendering in widely used Internet explorers. The outcome of our pilot work proves our original assumption of HL7 standard being able to adopt radiology data into the integrated healthcare systems. Conclusion Uniform DICOM to CDA translation scripts and business processes within IHCIS is desired and cost effective regarding to use of supporting IHCIS services aligned to SOA.