Why health information needs to be accessible to all.
Ontology highlight
ABSTRACT:
SUBMITTER: Waterston T
PROVIDER: S-EPMC6267305 | biostudies-literature | 2018
REPOSITORIES: biostudies-literature
Publications
Why health information needs to be accessible to all.
Waterston Tony T Pakenham Walsh Neil N
BMJ paediatrics open 20181010 1
Similar Datasets
Project description:ObjectiveThis study describes the most common cancer-related health information needs among rural cancer survivors and characteristics associated with reporting more information needs.MethodsRural breast, prostate, and colorectal cancer survivors, two to five years post-diagnosis, identified from an institutional cancer registry, completed a mailed/telephone-administered survey. Respondents were asked about 23 health information needs in eight domains (tests and treatment, side effects and symptoms, health promotion, fertility, interpersonal, occupational, emotional, and insurance). Poisson regression models were used to assess relationships between number of health information needs and demographic and cancer characteristics.ResultsParticipants (n = 170) reported an average of four health information needs, with the most common domains being: side effects and symptoms (58 %), health promotion (54 %), and tests and treatment (41 %). Participants who were younger (compared to 5-year increase, rate ratio [RR] = 1.11, 95 % CI = 1.02-1.21), ethnic minority (RR = 1.89, 95 % CI = 1.17-3.06), less educated (RR = 1.49, 95 % CI = 1.00-2.23), and financially stressed (RR = 1.87, 95 % CI = 1.25-2.81) had a greater number of information needs.ConclusionsYounger, ethnic minority, less educated, and financially strained rural survivors have the greatest need for informational support.Practice implicationsThe provision of health information for rural cancer survivors should consider type of cancer, treatments received, and sociocultural differences to tailor information provided.
| S-EPMC7311274 | biostudies-literature
Project description:BackgroundThe integration of medical and dental records is gaining significance over the past 2 decades. However, few studies have evaluated the opinions of practicing dentists on patient medical histories. Questions remain on dentists' information needs; their perception of the reliability of patient-reported medical history; satisfaction with the available information and the methods to gather this information; and their attitudes to other options, such as a health information exchange (HIE) network, to collect patient medical history.ObjectiveThis study aims to determine Indiana dentists' information needs regarding patients' medical information and their opinions about accessing it via an HIE.MethodsWe administered a web-based survey to Indiana Dental Association members to assess their current medical information-retrieval approaches, the information critical for dental care, and their willingness to access or share information via an HIE. We used descriptive statistics to summarize survey results and multivariable regression to examine the associations between survey respondents' characteristics and responses.ResultsOf the 161 respondents (161/2148, 7.5% response rate), 99.5% (n=160) respondents considered patients' medical histories essential to confirm no contraindications, including allergies or the need for antibiotic prophylaxis during dental care and other adverse drug events. The critical information required were medical conditions or diagnosis, current medications, and allergies, which were gathered from patient reports. Furthermore, 88.2% (n=142) of respondents considered patient-reported histories reliable; however, they experienced challenges obtaining information from patients and physicians. Additionally, 70.2% (n=113) of respondents, especially those who currently access an HIE or electronic health record, were willing to use an HIE to access or share their patient's information, and 91.3% (n=147) shared varying interests in such a service. However, usability, data accuracy, data safety, and cost are the driving factors in adopting an HIE.ConclusionsPatients' medical histories are essential for dentists to optimize dental care, especially for those with chronic conditions. In addition, most dentists are interested in using an HIE to access patient medical histories. The findings from this study can provide an alternative option for improving communications between dental and medical professionals and help the health information technology system or tool developers identify critical requirements for more user-friendly designs.
| S-EPMC10811575 | biostudies-literature
Project description:BackgroundPatients are increasingly being provided with access to their electronic health records. However, in mental health care contexts, concerns have been raised due to a perception that such access would pose risks to patients, third parties, and the therapeutic relationship. These perceived risks may affect the information practices of health care professionals (HCPs) and patients, such as how they document, share, and use information in mental health care services with a patient-accessible electronic health record (PAEHR). Although there is growing research interest in PAEHRs, no study has specifically examined how they impact information practices. Understanding the impacts on information practices may help explain other outcomes of implementing PAEHRs and inform their design.ObjectiveThis scoping review aimed to explore the research on PAEHRs in mental health care contexts and how PAEHRs affect information practices of HCPs and patients in this context.MethodsA scoping review was considered the most appropriate method due to the relatively recent adoption of PAEHRs in mental health care contexts and the heterogeneous nature of the evidence base. A comprehensive search of electronic databases was conducted for original empirical studies that described the use of PAEHRs or associated systems in mental health care contexts. One author reviewed all full texts, with 3 other authors reviewing a subset of studies. The study characteristics and findings were documented, and a thematic synthesis and textual narrative analysis were used to develop descriptive and analytical themes that addressed the research questions.ResultsA total of 66 studies were considered eligible and included in the analysis. The impact of PAEHRs on information practices in mental health care contexts included the following: (1) they may change how HCPs document patient information, including a reduction in detail and a focus on information perceived by HCPs as objective rather than subjective; (2) they may negatively impact workflows due to changes in documentation practices and limited guidance for HCPs on how to use PAEHRs; and (3) they may contribute to improved communication between HCPs and patients, including constructive disagreements regarding what is documented in the health record. The changes to HCP information practices were influenced by a concern for the therapeutic relationship and patient safety. Furthermore, PAEHRs supported new information practices for patients, such as using their PAEHR to prepare for clinical encounters.ConclusionsWe have identified several ways in which PAEHRs shape the information practices of HCPs and patients in the mental health context. These findings can inform the design of PAEHRs to promote information practices that contribute to improving the quality of mental health care. Further research is necessary to understand how changes in information practices due to the implementation of PAEHRs impact clinical outcomes and patient experiences of care.
| S-EPMC11845895 | biostudies-literature
Project description:ObjectiveTo explore whether there is a potential for greater use of research-based information in public health practice in a local setting. Secondly, if research-based information is relevant, to explore the extent to which this generates questioning behaviour.DesignQualitative study using focus group discussions, observation and interviews.SettingPublic health practices in Norway.Participants52 public health practitioners.ResultsIn general, the public health practitioners had a positive attitude towards research-based information, but believed that they had few cases requiring this type of information. They did say, however, that there might be a potential for greater use. During five focus groups and six observation days we identified 28 questions/cases where it would have been appropriate to seek out research evidence according to our definition. Three of the public health practitioners identified three of these 28 cases as questions for which research-based information could have been relevant. This gap is interpreted as representing unrecognised information needs.ConclusionsThere is an unrealised potential in public health practice for more frequent and extensive use of research-based information. The practitioners did not appear to reflect on the need for scientific information when faced with new cases and few questions of this type were generated.
| S-EPMC29105 | biostudies-literature
Project description:Genome-wide DNA methylation profiling of blood of participants from a high CVD risk community-based cohort of African American individuals from Washington D.C. Chronic stress increases the risk of cardiovascular disease (CVD) and amygdalar activity (AmygA), a known marker of chronic stress which has been associated with subclinical CVD. Previous research suggests a plausible connection between AmygA, hematopoietic tissue activity, arterial inflammation, and cardiovascular events. There is a paucity of data on the relationships between AmygA, hematopoietic activity, and epigenomics modifications through deoxyribonucleic acid (DNA) methylation among racial and ethnic minorities. We investigated the association between AmygA and spleen (SpleenA) and bone marrow activity (BMA) as well as DNA methylation at genes previously associated with stress. Participants included in the study were from a high CVD risk community-based cohort of African American individuals from Washington D.C. AmygA was measured by aortic uptake of 18Fluorodeoxyglucose (FDG) on Positron Emission Tomography/Computed Tomography and calculated as standardized uptake values (SUVs). SpleenA and BMA were calculated as SUVs from regions of interest within the spleen and vertebrae, respectively. Standardized beta coefficients (β ) and p-values were calculated from linear regression models adjusted for body mass index and 10-year predicted atherosclerotic CVD risk.
2024-09-06 | GSE241763 | GEO
Project description:PurposeWhen adolescents feel that their opinions are valued and respected, they are more likely to seek and use health services. Our aim was to identify what health information adolescents in Geneva, Switzerland, want and how much they are willing to participate in health promotion, linking it to international recommendations.MethodData were collected from 970 adolescents (aged 12-15 years), between September and November 2022, using a classroom-based survey.ResultsAdolescents expressed their preferences: the study showed that the topics of sleep, self-perception, biology, mental health, and physical activity received the highest interest. Girls were more interested than boys in the issues of sleep, mental health, violence, and social life. Adolescents' increasing interest in sexuality issues as they get older is inversely proportional to their interest in other issues such as pandemics, medical research, and the environment, which they are more interested in during early adolescence. Everyone over two felt it was important to promote health in their social environment. And more than a third of teens are open to participating in such activities.DiscussionAdolescents are open to various health subjects, except for pandemics. Age dependent interest highlights the importance of tailoring intervention programs. Adolescents consider health promotion important and are willing to participate, as recommended by the World Health Organization. By involving them as experts in their adolescence, we have taken an essential step. We strongly recommend continuing involving and trusting adolescents in shaping future interventions.
| S-EPMC10959694 | biostudies-literature
Project description:BackgroundHealth information exchange (HIE), the electronic sharing of clinical information across the boundaries of health care organizations, has been promoted to improve the efficiency, cost-effectiveness, quality, and safety of health care delivery.ObjectiveTo systematically review the available research on HIE outcomes and analyze future research needs.MethodsData sources included citations from selected databases from January 1990 to February 2015. We included English-language studies of HIE in clinical or public health settings in any country. Data were extracted using dual review with adjudication of disagreements.ResultsWe identified 34 studies on outcomes of HIE. No studies reported on clinical outcomes (eg, mortality and morbidity) or identified harms. Low-quality evidence generally finds that HIE reduces duplicative laboratory and radiology testing, emergency department costs, hospital admissions (less so for readmissions), and improves public health reporting, ambulatory quality of care, and disability claims processing. Most clinicians attributed positive changes in care coordination, communication, and knowledge about patients to HIE.ConclusionsAlthough the evidence supports benefits of HIE in reducing the use of specific resources and improving the quality of care, the full impact of HIE on clinical outcomes and potential harms are inadequately studied. Future studies must address comprehensive questions, use more rigorous designs, and employ a standard for describing types of HIE.Trial registrationPROSPERO Registry No CRD42014013285; http://www.crd.york.ac.uk/PROSPERO/ display_record.asp?ID=CRD42014013285 (Archived by WebCite at http://www.webcitation.org/6dZhqDM8t).
| S-EPMC4704923 | biostudies-literature
Project description:OBJECTIVE:Male breast cancer (MBC) is rare. Information about breast cancer is usually designed for female patients. However, in males this disease and some side effects differ from its female counterpart. Therefore, there is a need for male-specific information. The aim was to assess unmet information needs of (a) MBC patients and (b) health professionals. METHODS:Dutch MBC patients (diagnosed between 2011 and 2016 in 21 hospitals), patient advocates and partners were invited to participate in focus groups and/or complete a paper-based questionnaire on information needs. In addition, an online questionnaire on information needs was sent to health professionals involved in MBC patient care. RESULTS:In three focus groups with MBC patients (N = 12) and partners (N = 2) the following unmet information themes were identified: patients' experiences/photographs, symptoms, (delay of) diagnosis, treatments, side effects, follow-up, psychological impact/coping, genetics and family, research and raising awareness. 77 of 107 MBC patients (72%) completed the questionnaire: most patients lacked information about acute (65%) or late (56%) side effects, particularly sexual side effects. Among health professionals, 110 of 139 (79%) had searched for MBC-related information, specifically: patient information, anti-hormonal therapy, genetic testing, research, and psychosocial issues. CONCLUSIONS:Unmet information needs in MBC patients and health professionals were identified. Specific information on MBC should be developed to improve timely diagnosis, quality of life, treatment, and survival. A targeted website is an ideal tool to meet these needs. Therefore, we integrated these results into a user-centered design to develop an informative website, www.mannenmetborstkanker.nl.
| S-EPMC7317856 | biostudies-literature
Project description:BackgroundOptimal management of osteoarthritis requires active patient participation. Understanding patients' perceived health information needs is important in order to optimize health service delivery and health outcomes in osteoarthritis. We aimed to review the existing literature regarding patients' perceived health information needs for OA.MethodsA systematic scoping review was performed of publications in MEDLINE, EMBASE, CINAHL and PsycINFO (1990-2016). Descriptive data regarding study design and methodology were extracted and risk of bias assessed. Aggregates of patients' perceived needs of osteoarthritis health information were categorized.Results30 studies from 2876 were included: 16 qualitative, 11 quantitative and 3 mixed-methods studies. Three areas of perceived need emerged: (1) Need for clear communication: terms used were misunderstood or had unintended connotations. Patients wanted clear explanations. (2) Need for information from various sources: patients wanted accessible health professionals with specialist knowledge of arthritis. The Internet, whilst a source of information, was acknowledged to have dubious reliability. Print media, television, support groups, family and friends were utilised to fulfil diverse information needs. (3) Needs of information content: patients desired more information about diagnosis, prognosis, management and prevention.ConclusionsPatients desire more information regarding the diagnosis of osteoarthritis, its impact on daily life and its long-term prognosis. They want more information not only about pharmacological management options, but also non-pharmacological options to help them manage their symptoms. Also, patients wanted this information to be delivered in a clear manner from multiple sources of health information. To address these gaps, more effective communication strategies are required. The use of a variety of sources and modes of delivery may enable the provision of complementary material to provide information more successfully, resulting in better patient adherence to guidelines and improved health outcomes.
| S-EPMC5901923 | biostudies-literature
Project description:ObjectiveThis study assessed public health workers' evidence-based information needs, based on a review of the literature using a systematic search strategy. This study is based on a thesis project conducted as part of the author's master's in public health coursework and is considered a systematized review.MethodsFour databases were searched for English-language articles published between 2005 and 2015: PubMed, Web of Science, Library Literature & Information Science Index, and Library, Information Science & Technology Abstracts (LISTA). Studies were excluded if there was no primary data collection, the population in the study was not identified as public health workers, "information" was not defined according to specific criteria, or evidence-based information and public health workers were not the major focus. Studies included in the final analysis underwent data extraction, critical appraisal using CASP and STROBE checklists, and thematic analysis.ResultsThirty-three research studies were identified in the search, including twenty-one using quantitative methods and twelve using qualitative methods. Critical appraisal revealed many potential biases, particularly in the validity of research. Thematic analysis revealed five common themes: (1) definition of information needs, (2) current information-seeking behavior and use, (3) definition of evidence-based information, (4) barriers to information needs, and (5) public health-specific issues.ConclusionsRecommendations are given for how librarians can increase the use of evidence-based information in public health research, practice, and policy making. Further research using rigorous methodologies and transparent reporting practices in a wider variety of settings is needed to further evaluate public health workers' information needs.
| S-EPMC5234453 | biostudies-literature