Leveraging a health information exchange for analyses of COVID-19 outcomes including an example application using smoking history and mortality.

Understanding sociodemographic, behavioral, clinical, and laboratory risk factors in patients diagnosed with COVID-19 is critically important, and requires building large and diverse COVID-19 cohorts with both retrospective information and prospective follow-up. A large Health Information Exchange (HIE) in Southeast Texas, which assembles and shares electronic health information among providers to facilitate patient care, was leveraged to identify COVID-19 patients, create a cohort, and identify risk factors for both favorable and unfavorable outcomes. The initial sample consists of 8,874 COVID-19 patients ascertained from the pandemic's onset to June 12th, 2020 and was created for the analyses shown here. We gathered demographic, lifestyle, laboratory, and clinical data from patient's encounters across the healthcare system. Tobacco use history was examined as a potential risk factor for COVID-19 fatality along with age, gender, race/ethnicity, body mass index (BMI), and number of comorbidities. Of the 8,874 patients included in the cohort, 475 died from COVID-19. Of the 5,356 patients who had information on history of tobacco use, over 26% were current or former tobacco users. Multivariable logistic regression showed that the odds of COVID-19 fatality increased among those who were older (odds ratio = 1.07, 95% CI 1.06, 1.08), male (1.91, 95% CI 1.58, 2.31), and had a history of tobacco use (2.45, 95% CI 1.93, 3.11). History of tobacco use remained significantly associated (1.65, 95% CI 1.27, 2.13) with COVID-19 fatality after adjusting for age, gender, and race/ethnicity. This effort demonstrates the impact of having an HIE to rapidly identify a cohort, aggregate sociodemographic, behavioral, clinical and laboratory data across disparate healthcare providers electronic health record (HER) systems, and follow the cohort over time. These HIE capabilities enable clinical specialists and epidemiologists to conduct outcomes analyses during the current COVID-19 pandemic and beyond. Tobacco use appears to be an important risk factor for COVID-19 related death.

Health information seeking behaviors among individuals with young-onset and average-onset colorectal cancer: an international cross-sectional survey.

PURPOSE: Our objective was to evaluate health information seeking behaviors in yCRC (young onset colorectal cancer, diagnosed ≤ 50 years) and aCRC (average-age onset colorectal cancer, diagnosed ≥ 50 years). METHODS: We administered an international, Internet-based survey to ask individuals diagnosed with CRC how they seek health information, including sources sought and utilization behaviors. We also asked participants their preferences for digital technologies. RESULTS: In total 1125 individuals including 455 with yCRC (68.6% female) and 670 with aCRC (53.5% female) participated. There were similar frequencies of seeking among participants with yCRC and aCRC across all sources except for the Internet. Healthcare providers were the most frequently sought source with similar proportions of participants indicating their response as "always" (yCRC, 43.7% vs. aCRC, 43.2%, p = 0.91). We also observed differences in utilization behaviors with more participants with yCRC using the Internet first when seeking information (yCRC 31.6% vs. aCRC 24.3%, p < 0.05) and those with aCRC seeking healthcare providers first (aCRC 61.9% vs. yCRC 45.5%, p < 0.05). With respect to digital technologies, we found a higher proportion of yCRC participants owning smartphones and indicating use of apps related to health/wellness and cancer. CONCLUSION: Individuals with yCRC and aCRC similarly sought the same resources for health information on CRC. However, they differed with respect to utilization behaviors, particularly a greater reliance on digital technologies among individuals with yCRC. These have implications for informing age-specific resources and information to support patients.

Impact of a Prescription Drug Monitoring Program on Health Information Exchange Utilization, Prescribing Behaviors, and Care Coordination in an Emergency Department.

Timely access to patient data is critical in patient care. The utilization of health information exchange and prescription drug monitoring programs can make pertinent data readily accessible for emergency department providers to coordinate care. A quasi-experimental preintervention-postintervention design, with 62 providers and 53 554 emergency department visits linked to a health information exchange and prescription drug monitoring program, was used to evaluate rates for utilization, laboratory/imaging orders, narcotic prescribing and readmission. Health information exchange utilization increased significantly after the drug monitoring program was implemented (mean = 119.33 to mean = 231.33, t2 = -15.79, P < .001). There was no significant effect postprescription drug monitoring program for laboratory/imaging orders or narcotics at discharge, although narcotic orders during emergency visits increased (F1,23 = 7.953, P = .010), which may suggest the data confirmed the immediate need to control acute or chronic conditions. In addition, readmission rates decreased from 14.64% to 12.58%. Through streamlining processes, health information exchange and prescription drug monitoring program usage were increased, which can improve care. As organizations promote interoperability of health information, the nurse informaticist plays a significant role in managing access to systems that can assist all providers in coordinating care.

Discordance in Information Exchange Between Providers During Care Transitions for Surgical Patients.

BACKGROUND: The exchange of health information between primary care providers (PCPs) and surgeons is critical during transitions of care for older patients with multiple comorbidities; however, it is unknown to what extent this process occurs. This study was designed to characterize the extent to which factors associated with older patient's recovery, such as functional status, cognitive status, social status, and emotional factors, are shared among PCPs and surgical providers during care transitions. MATERIALS AND METHODS: We prospectively identified 15 patients aged over 60 y with ≥3 comorbidities referred for general and vascular surgery procedures at a Veterans Administrative and academic medical center. Semistructured Critical Decision Method interviews were conducted with patients along with their surgical providers and referring PCPs. Thematic content analysis was performed independently by five reviewers on the cognitive processes associated with functional status, cognitive status, social status, and emotional factors. Interrater reliability between providers and patients was assessed using Cohen's kappa. RESULTS: Forty-seven Critical Decision Method interviews were conducted, which included 20 paired interviews between a PCP and a surgeon and 16 paired interviews that involved a patient and a provider. The majority of patients reported experiencing poor information exchange between their PCP and surgeon (58%) and feeling they were primarily responsible for communicating their own health information during care transitions (67%). In paired interviews between PCPs and surgeons, there was nearly perfect agreement for the shared knowledge of cognitive (kappa: 0.83) and emotional (kappa 1) factors. In contrast, there was only minimal agreement for shared knowledge of functional status (kappa 0.38) and social status (kappa: 0.34). CONCLUSIONS: Information exchange between PCPs and surgical providers is often discordant during transitions of surgical care for medically complex older patients, particularly when it pertains to communicating their functional or social status.

Health-related Google searches performed by parents of pediatric oncology patients.

BACKGROUND: Little is known about the specific information parents of children with cancer search for online. Understanding the content of parents' searches over time could offer insight into what matters most to parents and identify knowledge gaps that could inform more comprehensive approaches to family education and support. METHODS: We describe parents' health-related Google searches starting six months before cancer diagnosis and extending through the date of study enrollment, which was at least one month after initiating cancer treatment. Searches were obtained retrospectively and grouped into health-related and non-health-related categories. The median time to parent enrollment from date of cancer diagnosis was 264 days. RESULTS: Parents searched for health-related topics more frequently than the general population (13% vs 5%). Health-related searches increased in the months preceding the child's cancer diagnosis and most commonly pertained to symptoms and logistics, "directions to hospital." Health-related search volume peaked about a month after cancer diagnosis when general health-related searches were present in addition to cancer-specific searches. Eighteen percent of health-related searches were cancer specific, and of these cancer-specific searches, 54% pertained to support, for example "cancer quote for son." CONCLUSIONS: Google search content offers insight into what matters to parents of cancer patients. Understanding search content could inform more comprehensive approaches to family education and support initiatives.

Understanding the role of health information in patients' experiences: secondary analysis of qualitative narrative interviews with people diagnosed with cancer in Germany.

OBJECTIVE: To analyse the role and meaning of health information in individuals' experiences with either breast, colorectal or prostate cancer in order to better understand unmet information needs of people with a cancer diagnosis. DESIGN: This is a secondary analysis of data from a qualitative interview study including narrative interviews and maximum variation sampling. A thematic analysis was conducted, followed by an in-depth analysis based on the principles of grounded theory. SETTING: Interviewees were sought across Germany through self-help organisations, primary care clinics, rehabilitation facilities, physicians and other healthcare professionals to develop cancer modules for the website krankheitserfahrungen.de (illness experiences.de). PARTICIPANTS: Women with a diagnosis of breast cancer, individuals with a diagnosis of colorectal cancer and men with a diagnosis of prostate cancer. RESULTS: The meaning and role of information in the illness experiences were clearly associated with gaining control in a seemingly uncontrollable situation in which others -people, the disease- take over. Four categories characterise the ways in which information helped interviewees to regain a sense of control following a diagnosis of cancer: 'becoming confident in one's treatment decision', 'taking responsibility for one's situation', 'understanding the consequences of the disease and treatment for one's life', and 'dealing with fear'. There was, however, always a fine line between information seeking and becoming overwhelmed by information. CONCLUSIONS: Information needs to be understood as a management tool for handling the disease and its (potential) consequences. Patients' unmet needs for information might not be easily solved by a simple increase in the amount of information because emotional support and respect for patient autonomy might also play a role. The evaluation of one's own information behaviour and the information received is closely linked to how the illness unfolds. This makes it challenging to document unmet information needs and satisfaction with information independent of an individual's illness trajectory over time.

Team-Based Health Information Exchange Use Increased Mammography Documentation and Referral in an Academic Primary Care Practice: An Interrupted Time Series.

BACKGROUND: Few studies have examined the impact of health information exchanges (HIE) on quality in ambulatory settings. METHODS: From September 29, 2014, to September 4, 2015, we conducted an interrupted time series analysis of query-based use of the state HIE as part of team-based care to improve mammography screening in an academic primary care practice. Women aged 50-74 years with a practice visit and who were eligible for mammography were included. We conducted non-parametric data analysis using LOESS, followed by ARIMA analysis. RESULTS: During the study period, there were 2020 visits among 904 eligible patients, including 648 visits among 485 patients during 16 baseline weeks, and 1372 visits by 755 patients during 33 intervention weeks. During the intervention period, 16.0% of eligible women who were not up to date in our EHR had a mammogram in the HIE. Of eligible women, the proportion who had a documented up-to-date mammogram at the time of their visit increased by 11.3%, from 73.4% at baseline to 84.7% (p < 0.0001), the proportion who had mammography addressed at the time of their visit increased by 42.7%, from 32.7% at baseline to 75.4% (p < 0.0001), and the proportion who were up to date at 8 weeks post-visit increased by 11.7%, from 76.3% at baseline to 88.0% (p < 0.0001). DISCUSSION: Query-based use of the state HIE as part of team-based care improved documentation of mammography and led to an increase in the proportion of eligible women who received counseling on mammography screening in one primary care practice. These results suggest that HIE use in primary care could lead to improved delivery of other preventive services.

Nurses' Use and Perception of an Information and Communication Technology System for Improving Coordination During Hospital Discharges: A Survey in Swedish Primary Healthcare.

To facilitate communications between care levels and improve coordination during hospital discharges, there is great potential in using information and communication technology systems, because they can significantly help to deter unnecessary readmissions. However, there is still a lack of knowledge about how often nurses use information and communication technology and the indicators related to its use. The aims of this study were to describe the indicators related to nurses' use of an information and communication technology system for collaboration between care levels and to estimate whether the level of use can be related to nurses' perceptions of the information and communication technology system's contribution to improve coordination during hospital discharges. A quantitative survey of 37 nurses from 11 primary healthcare centers was performed in a county in southern Sweden. The data were analyzed using descriptive and comparative analyses. The results showed that perceptions concerning the information and communication technology system's usability and time consumption differed between nurses who used the system and those who did not. Simultaneously, the nurses were rather unaware of the ability of the information and communication technology system to improve coordination during patient discharges.

Secondary consent to biospecimen use in a prostate cancer biorepository.

BACKGROUND: Biorepository research has substantial societal benefits. This is one of the few studies to focus on male willingness to allow future research use of biospecimens. METHODS: This study analyzed the future research consent questions from a prostate cancer biorepository study (N = 1931). The consent form asked two questions regarding use of samples in future studies (1) without and (2) with protected health information (PHI). Yes to both questions of use of samples was categorized as Yes-Always; Yes to without and No to with PHI was categorized as Yes-Conditional; No to without PHI was categorized as Never. We analyzed this outcome to determine significant predictors for consent to Yes-Always vs. Yes-Conditional. RESULTS: 99.33 % consented to future use of samples; 88.19 % consented to future use without PHI, and among those men 10.2 % consented to future use with PHI. Comparing Yes Always and Yes Conditional responses, bivariate analyses showed that race, family history, stage of cancer, and grade of cancer (Gleason), were significant at the α = 0.05 level. Using stepwise multivariable logistic regression, we found that African-American men were significantly more likely to respond Yes Always when compared to White men (p < 0.001). Those with a family history of prostate cancer were significantly more likely to respond Yes Always (p = 0.002). CONCLUSIONS: There is general willingness to consent to future use of specimens without PHI among men.

A Dichotomy of Information-Seeking and Information-Trusting: Stem Cell Interventions and Children with Neurodevelopmental Disorders.

Parents and primary caregivers of children with Cerebral Palsy (CP) and Autism Spectrum Disorder (ASD) are faced with difficult treatment choices and management options for their children. The potential of stem cell technologies as an interventional strategy for CP and ASD has gained attention in the last decade. Information about these interventions varies in quality, resulting in a complex landscape for parent decision making for a child's care. Further complicating this landscape are clinics that advertise these interventions as a legitimate treatment for a fee. In this study, we surveyed individuals who considered taking their child with ASD or CP abroad for stem cell interventions on their use of different sources of stem cell related health information and their level of trust in these sources. Participants reported that while the Internet was their most frequent source of information, it was not well-trusted. Rather, information sources trusted most were researchers and the science journals in which they publish, other parents of children with CP and ASD, and healthcare providers. These findings highlight a dichotomy between information-seeking preferences and information-trusted sources. We discuss the challenges of health science communication and present innovative opportunities to increase communication with trusted and reliable sources as part of an integrated multi-pronged approach.

Health Information Exchange Capabilities in Skilled Nursing Facilities.

The purpose of this study is to determine the levels at which health information exchange is used by skilled nursing facilities for clinical functions, the benefits and barriers associated with health information exchange and telehealth/telemonitoring capabilities, and the facility characteristics associated with health information exchange capabilities. A cross-sectional design was implemented. Data were collected from nursing home administrators, using a mail and online survey approach. A total of 156 usable questionnaires were returned of 397 distributed­a 39.30% response rate. The highest level of electronic exchange for clinical functions was within the facility than within corporation/affiliated organization or with nonaffiliated providers. It was also more prevalent in for-profit skilled nursing facilities than nonprofit skilled nursing facilities. More than half of the facilities reported no electronic exchange for functions, such as public health reporting, diagnostic test orders/results, medical orders/e-prescribing, advance directives, lab orders/results, and radiology orders/ results. Similarly, telehealth/telemonitoring was not in wide use by facilities in the state. The greatest barriers to electronic exchange of clinical functions were financial barriers, technological barriers, and connectivity barriers. Faster and accurate billing, improved care planning, and improved quality of documentation were reported as benefits of electronic information exchange of clinical data with affiliated and nonaffiliated providers.

How I do it: a practical database management system to assist clinical research teams with data collection, organization, and reporting.

RATIONALE AND OBJECTIVES: The objective of this study was to demonstrate that an intra-arterial liver therapy clinical research database system is a more workflow efficient and robust tool for clinical research than a spreadsheet storage system. The database system could be used to generate clinical research study populations easily with custom search and retrieval criteria. MATERIALS AND METHODS: A questionnaire was designed and distributed to 21 board-certified radiologists to assess current data storage problems and clinician reception to a database management system. Based on the questionnaire findings, a customized database and user interface system were created to perform automatic calculations of clinical scores including staging systems such as the Child-Pugh and Barcelona Clinic Liver Cancer, and facilitates data input and output. RESULTS: Questionnaire participants were favorable to a database system. The interface retrieved study-relevant data accurately and effectively. The database effectively produced easy-to-read study-specific patient populations with custom-defined inclusion/exclusion criteria. CONCLUSIONS: The database management system is workflow efficient and robust in retrieving, storing, and analyzing data.

Deficits in information transfer between hospital-based and primary-care physicians, the case of kidney disease: a cross-sectional study.

BACKGROUND: Late recognition plays an important role in prognosis associated with kidney disease; thus, information transfer at hospital discharge regarding kidney disease is crucial. Whether it is notified in patients' hospital discharge summary (HDS) is presently largely unknown. STUDY DESIGN: Cross-sectional. SETTING AND PARTICIPANTS: The prevalence of kidney dysfunction [estimated glomerular filtration rate (eGFR) <60 ml/min/1.73 m(2)] and its reporting to primary-care physicians from 26 units [11 surgery, 11 medical, 4 intensive care units (ICUs)] of a university hospital were analyzed in 14,000 hospitalizations. PREDICTOR: eGFR. OUTCOME: Notification of kidney dysfunction in HDS. MEASUREMENTS: GFR was estimated from serum creatinine using the Modification of Diet in Renal Disease formula. RESULTS: Kidney dysfunction was frequent (27.2 %) but infrequently notified in the main-body of the HDS (overall 25.3 %, medical 25 %, surgical 16.3 %, ICU 48.4 %) even when severe (eGFR 15-29.9 ml/min/1.73 m(2) was notified in 68.8, 38.5, and 79.8 % of HDSs in medical, surgical and ICUs, respectively). Notification in the HDS conclusion was rare (overall 11.4 %, medical 9.8 %, surgical 8.4 %, ICU 27.5 %). Reporting remained low when eGFR remained abnormal at discharge (medical 35.8 %, surgical 22.5 %, ICU 62.2 %) but was worse for acute kidney injury (16.0, 17.1, and 37.7 %, respectively). The optimal eGFR cut-off for reporting was 39 ml/min/1.73 m(2). Longer durations of hospitalization, greater numbers of creatinine measurements and of abnormal eGFR were associated with notification, regardless of the type of unit. LIMITATIONS: Lack of data to define acute or chronic kidney injury with precision. CONCLUSIONS: Kidney dysfunction is frequent in hospitalized patients but is usually not notified, even when severe or still present at discharge, suggesting that it is not considered important to disclose to primary-care physicians. This lack of information may decrease physicians' awareness, and may affect continuity of care in patients with kidney dysfunction.

Asking questions of a palliative care nurse practitioner on a pancreatic cancer website.

OBJECTIVE: Increasing evidence demonstrates the benefits of online cancer interventions but very little about the needs of those with pancreatic cancer or interaction with online providers. Our study was done to (1) see how many people would visit a webpage where they could interact with a palliative care nurse practitioner (PCNP), (2) see how many would ask the PCNP questions, (3) determine the type of questions, and (4) obtain feedback regarding the usefulness of the webpage. METHOD: Mixed-methods descriptive design. RESULTS: There were 2174 visits to the webpage, and a total of 84 participants sent 110 questions/comments. Some 28 (33%) were people worried that they might have pancreatic cancer. Most questions (59, 53%) had to do with palliative care issues, with the largest subgroup (26, 23%) involving psychological concerns. A total of 39 completed an online survey and were relatives (20, 52%), or patients (17, 44%). They rated the webpage at 3.3/4 as being helpful at learning about the physical symptoms/treatments of pancreatic cancer, at 3.1/4 for learning about emotional issues, at 3/4 for learning about palliative care, at 2.8/4 for learning about hospice, and at 3.3/4 for reading other people's questions. SIGNIFICANCE OF RESULTS: The PCNP webpage was a helpful resource. Most asking questions were worried about having or getting pancreatic cancer. More research is needed into online providers, interventions, and conducting research online.

Breast cancer and quality of life: medical information extraction from health forums.

Internet health forums are a rich textual resource with content generated through free exchanges among patients and, in certain cases, health professionals. We tackle the problem of retrieving clinically relevant information from such forums, with relevant topics being defined from clinical auto-questionnaires. Texts in forums are largely unstructured and noisy, calling for adapted preprocessing and query methods. We minimize the number of false negatives in queries by using a synonym tool to achieve query expansion of initial topic keywords. To avoid false positives, we propose a new measure based on a statistical comparison of frequent co-occurrences in a large reference corpus (Web) to keep only relevant expansions. Our work is motivated by a study of breast cancer patients' health-related quality of life (QoL). We consider topics defined from a breast-cancer specific QoL-questionnaire. We quantify and structure occurrences in posts of a specialized French forum and outline important future developments.

Novel data sources for women's health research: mapping breast screening online information seeking through Google trends.

RATIONALE AND OBJECTIVES: Millions of people use online search engines everyday to find health-related information and voluntarily share their personal health status and behaviors in various Web sites. Thus, data from tracking of online information seeker's behavior offer potential opportunities for use in public health surveillance and research. Google Trends is a feature of Google which allows Internet users to graph the frequency of searches for a single term or phrase over time or by geographic region. We used Google Trends to describe patterns of information-seeking behavior in the subject of dense breasts and to examine their correlation with the passage or introduction of dense breast notification legislation. MATERIALS AND METHODS: To capture the temporal variations of information seeking about dense breasts, the Web search query "dense breast" was entered in the Google Trends tool. We then mapped the dates of legislative actions regarding dense breasts that received widespread coverage in the lay media to information-seeking trends about dense breasts over time. RESULTS: Newsworthy events and legislative actions appear to correlate well with peaks in search volume of "dense breast". Geographic regions with the highest search volumes have passed, denied, or are currently considering the dense breast legislation. CONCLUSIONS: Our study demonstrated that any legislative action and respective news coverage correlate with increase in information seeking for "dense breast" on Google, suggesting that Google Trends has the potential to serve as a data source for policy-relevant research.

Potential benefits of treatment summaries for survivors' health and information needs: results from a LIVESTRONG survey.

PURPOSE: Treatment summaries (TSs), a critical component of survivorship care plans, have been identified as a tool to improve outcomes for the 14 million cancer survivors in the United States. METHODS: In 2010, the LIVESTRONG Foundation fielded the LIVESTRONG Survey for People Affected by Cancer. The survey was designed to assess the physical, emotional, and practical concerns after cancer as well as receipt of treatment summaries. Participants were recruited online and through national partners. RESULTS: Over a 9-month period, > 12,000 people completed the survey, including 3,682 post-treatment cancer survivors (PTCSs). PTCSs who received a TS reported that they were closer to time since diagnosis or end of treatment (P < .01), more likely to have received chemotherapy (P < .01), more likely to have received the majority of their health care from a medical oncologist (P < .05), experiencing significantly fewer post-treatment emotional concerns (P < .05), and significantly less likely to say that they had learned to live with their concerns (P < .05). PTCSs who received a TS more often reported that their needs had been met, including receiving information about possible late effects, care they received during treatment, and care they received after treatment. CONCLUSIONS: Receipt of a TS was associated with a variety of positive outcomes; however, only approximately one third of PTCSs received one. Future studies focused on patient perspectives on care planning tools can help to improve optimal survivorship care delivery. Possible solutions for improving access to a TS are included.

Piloting a national laboratory electronic programme status reporting system.

The NHLS performs close to 4 million CD4 tests per annum for the public sector in South Africa through a network of 60 CD4 testing laboratories. CD4 laboratory data provides an assessment of the number of patients on ART and HIV-positive patients in the pre-ART wellness programs. This study aims to develop a laboratory based Comprehensive Care, Management and Treatment of HIV and AIDS (CCMT) programme status reporting system for CD4 testing at three health facilities in the Ekurhuleni health district using a newly developed CCMT request form, the Laboratory Information System (LIMS) and Corporate Data Warehouse (CDW). The study will generate monitoring and evaluation data to assist in the management of health facilities through a national electronic corporate data warehouse.

Opportunistically discovering usability requirements for a clinical handover system.

Clinical Handover in hospital is a process that can cause a major risk to patients, and be inefficient and time-consuming for staff. Software designed to support such processes needs to be used in a demanding and fast-moving environment. This work formulated Usability Design Requirements for such a handover software system. The requirements have been derived from a usability evaluation at Auckland City Hospital, where the handover was observed in two different environments during a handover improvement process. The requirements were produced using a multi-method, triangulated approach and they may be able to inform the design of systems to support clinical handover. The physical environment and the protocols adopted for handover were changed during this process, with software changes waiting for a larger project. Periods of change in work practice may be particularly favourable times to perform such studies, even if major software changes are not implemented. Staff engagement with the process may also be improved during times of change.