INTRODUCTION: Information about pediatric survivors of brain tumors in developing countries is scant.
PURPOSE: In this study, we aimed to investigate the availability of resources for treatment and long-term follow-up of children with central nervous system tumors in developing countries.
MATERIALS AND METHODS: A web-based questionnaire on available services and follow-up of brain tumor survivors was posted at www.cure4kids.org , and registered users were invited to participate.
RESULTS: A total of 140 evaluable responses from developing countries (n = 103) and high-income countries (n = 37) were obtained. There was a significant correlation between gross national income and the availability of services for treatment and follow-up and between patient load and the availability of some services.
CONCLUSION: The resources for treatment and long-term follow-up of children with brain tumors need to be improved in developing countries.
The increased use of social media by physicians, combined with the ease of finding information online, can blur personal and work identities, posing new considerations for physician professionalism in the information age. A professional approach is imperative in this digital age in order to maintain confidentiality, honesty, and trust in the medical profession. Although the ability of physicians to use online social networks, blogs, and media sites for personal and professional reasons should be preserved, a proactive approach is recommended that includes actively managing one's online presence and making informed choices about disclosure. The development of a "dual-citizenship" approach to online social media that separates public and private personae would allow physicians to both leverage networks for professional connections and maintain privacy in other aspects. Although social media posts by physicians enable direct communication with readers, all posts should be considered public and special consideration for patient privacy is necessary.
The current commercial health information technology (HIT) arena encompasses a number of competing firms that provide electronic health applications to hospitals, clinical practices, and other healthcare-related entities. Such applications collect, store, and analyze patient information. Some vendors incorporate contract language whereby purchasers of HIT systems, such as hospitals and clinics, must indemnify vendors for malpractice or personal injury claims, even if those events are not caused or fostered by the purchasers. Some vendors require contract clauses that force HIT system purchasers to adopt vendor-defined policies that prevent the disclosure of errors, bugs, design flaws, and other HIT-software-related hazards. To address this issue, the AMIA Board of Directors appointed a Task Force to provide an analysis and insights. Task Force findings and recommendations include: patient safety should trump all other values; corporate concerns about liability and intellectual property ownership may be valid but should not over-ride all other considerations; transparency and a commitment to patient safety should govern vendor contracts; institutions are duty-bound to provide ethics education to purchasers and users, and should commit publicly to standards of corporate conduct; and vendors, system purchasers, and users should encourage and assist in each others' efforts to adopt best practices. Finally, the HIT community should re-examine whether and how regulation of electronic health applications could foster improved care, public health, and patient safety.
Public health agencies including federal, state, and local governments routinely send out public health advisories and alerts via e-mail and text messages to health care providers to increase awareness of public health events and situations. Agencies must ensure that practitioners have timely and accessible information at the critical point-of-care. Electronic health record (EHR) systems have the potential to alert physicians of emerging health conditions deemed important for public health at the most critical time of need. To understand how public health agencies can leverage existing alerting mechanisms in EHR systems, it is important to understand characteristics of public health alerts to determine their suitability for alerting in EHR systems. Authors conducted a review and analysis of public health alerts for a 3-year period to identify critical data attributes necessary to support public health alerting in EHR systems. The alerts were restricted to those most relevant for clinical care. The results showed that there is an opportunity for disseminating actionable information to clinical practitioners at the point of care to guide care and reporting. Public health alerts in EHR systems can be useful in reporting, recommending specific tests, as well as suggesting secondary prevention.
OBJECTIVE: Methicillin-resistant Staphylococcus aureus (MRSA) colonization in NICUs increases the risk of nosocomial infection. Network analysis provides tools to examine the interactions among patients and staff members that put patients at risk of colonization.
METHODS: Data from MRSA surveillance cultures were combined with patient room locations, nursing assignments, and sibship information to create patient- and unit-based networks. Multivariate models were constructed to quantify the risk of incident MRSA colonization as a function of exposure to MRSA-colonized infants in these networks.
RESULTS: A MRSA-negative infant in the NICU simultaneously with a MRSA-positive infant had higher odds of becoming colonized when the colonized infant was a sibling, compared with an unrelated patient (odds ratio: 8.8 [95% confidence interval [CI]: 5.3-14.8]). Although knowing that a patient was MRSA-positive and was placed on contact precautions reduced the overall odds of another patient becoming colonized by 35% (95% CI: 20%-47%), having a nurse in common with that patient still increased the odds of colonization by 43% (95% CI: 14%-80%). Normalized group degree centrality, a unitwide network measure of connectedness between colonized and uncolonized patients, was a significant predictor of incident MRSA cases (odds ratio: 18.1 [95% CI: 3.6-90.0]).
CONCLUSIONS: Despite current infection-control strategies, patients remain at significant risk of MRSA colonization from MRSA-positive siblings and from other patients with whom they share nursing care. Strategies that minimize the frequency of staff members caring for both colonized and uncolonized infants may be beneficial in reducing the spread of MRSA colonization.
INTRODUCTION: Online web-based interventions can be effective ancillary tools for managing diabetes. There is a high prevalence of diabetes in New Zealand Maori, and yet this group has generally been a low priority for web-based interventions due to perceptions of low Internet access and Internet literacy.
AIM: To assess Internet access and literacy in New Zealanders with diabetes, especially high-risk Maori.
METHODS: A telephone survey of all patients with diabetes in an urban general practice. Internet access is assessed by Internet presence in the home, and Internet literacy by the ability to use email and the World Wide Web.
RESULTS: One hundred percent response rate with 68 participants, including 38% Maori. Internet access for Maori was 70% and Internet literacy 41%.
DISCUSSION: Internet access and literacy for Maori with diabetes may be higher than previously thought. Health policies may wish to focus effective and cost-efficient web-based interventions on this high diabetes risk group.
The authors developed a computer-based medical history for patients to take in their homes via the internet. The history consists of 232 'primary' questions asked of all patients, together with more than 6000 questions, explanations, and suggestions that are available for presentation as determined by a patient's responses. The purpose of this research was to measure the test-retest reliability of the 215 primary questions that have preformatted, mutually exclusive responses of 'Yes,' 'No,' 'Uncertain (Don't know, Maybe),' 'Don't understand,' and 'I'd rather not answer.' From randomly selected patients of doctors affiliated with Beth Israel Deaconess Medical Center in Boston, 48 patients took the history twice with intervals between sessions ranging from 1 to 35 days (mean 7 days; median 5 days). High levels of test-retest reliability were found for most of the questions, but as a result of this study the authors revised five questions. They recommend that structured medical history questions that will be asked of many patients be measured for test-retest reliability before they are put into widespread clinical practice.
We have developed a novel approach, the Digital Crumb Investigator, for using data collected as a byproduct of Electonic Health Record (EHR) use to help define care teams and care processes. We are developing tools and methods to utilize these routinely collected data to visualize and quantify care networks across acute care and ambulatory settings We have chosen a clinical care domain where clinicians use EHRs in their offices, on the maternity wards and in the neonatal intensive care units as a test paradigm for this technology. The tools and methods we deliver should readily translate to other health care settings that collect behind-the-scenes electronic metadata such as audit trails. We believe that by applying the methods of social networking to define clinical relationships around a patient's care we will enable new areas of research into the usage of EHRs to promote patient safety and other improvements in care.
In this paper the authors have extended the methodology for temporal analysis of online forums and applied the methodology to six online cancer forums (melanoma, prostate cancer, testicular cancer, ovarian cancer and breast cancer). The goal was to develop, apply and improve methods that quantify the responsiveness of the interactions in online forums in order to identify the users and topics that promote use and usefulness of these online medical communities. The evolutional stages that gauge when a forum is expanding, contracting, or in a state of equilibrium were considered. The response function was thought to be an approximation of a discussion group's utility to its members. By applying the evolutionary phase algorithm, it was determined that two out of six of the forums are in contracting phases, while four are in their largest growth phase. By analyzing the topics of the influential threads, the authors conclude that cancer treatment discussions as well as stage IV cancer discussions promote growth in the forums. It is observed that the discussion of treatment rather than diagnosis is important to help a cancer forum thrive.
PURPOSE: The widespread adoption of electronic health records (EHRs) is creating rich databases documenting the cancer patient's care continuum. However, much of this data, especially narrative "oncologic histories," are "locked" within free text (unstructured) portions of notes. Nationwide incentives, ranging from certification (Quality Oncology Practice Initiative) to monetary reimbursement (the Health Information Technology for Economic and Clinical Health Act), increasingly require the translation of these histories into treatment summaries for patient use and into tools to assist in transitions of care. Unfortunately, formulation of treatment summaries from these data is difficult and time-consuming. The rapidly developing field of automated natural language processing may offer a solution to this communication problem.
METHODS: We surveyed a cross section of providers at Beth Israel Deaconess Medical Center regarding the importance of treatment summaries and whether these were being formulated on a regular basis. We also developed a program for the Informatics for Integrating Biology and the Bedside challenge, which was designed to extract meaningful information from EHRs. The program was then applied to a sample of narrative oncologic histories.
RESULTS: The majority of providers (86%) felt that treatment summaries were important, but only 11% actually implemented them. The most common obstacles identified were lack of time and lack of EHR tools. We demonstrated that relevant medical concepts can be automatically extracted from oncologic histories with reasonable accuracy and precision.
CONCLUSION: Natural language processing technology offers a promising method for structuring a free-text oncologic history into a compact treatment summary, creating a robust and accurate means of communication between providers and between provider and patient.
PURPOSE: We assessed the availability and quality of palliative care for children with cancer according to national income per capita.
METHODS: We surveyed physicians who care for children with cancer using the Cure4Kids website (http://www.cure4kids.org). Queries addressed oncology practice site; reimbursement; specialised palliative care, pain management and bereavement care; location of death; decision-making support and perceived quality of care. Responses were categorised by low-, middle- and high-income country (LIC, MIC and HIC).
RESULTS: Of 262 completed questionnaires from 58 countries (response rate, 59.8%), 242 were evaluable (55%). Out-of-pocket payment for oncology (14.8%), palliative care (21.9%) and comfort care medications (24.3%) was most likely to be required in LIC (p<0.001). Availability of specialised palliative care services, pain management, bereavement care and institutional or national decision-making support was inversely related to income level. Availability of high-potency opioids (p=0.018) and adjuvant drugs (p=0.006) was significantly less likely in LIC. Physicians in LIC were significantly less likely than others to report high-quality pain control (p<0.001), non-pain symptom control (p=0.003) and emotional support (p=0.001); bereavement support (p=0.035); interdisciplinary care (p<0.001) and parental participation in decisions (p=0.013).
CONCLUSION: Specialised palliative care services are unavailable to children with cancer in economically diverse regions, but particularly in LIC. Access to adequate palliation is associated with national income. Programme development strategies and collaborations less dependent on a single country's economy are suggested.
BACKGROUND: Although patients are commonly using the Internet to find healthcare information, the amount of personal and professional physician information and patient-generated ratings freely accessible online is unknown.
OBJECTIVE: To characterize the nature of online professional and personal information available to the average patient searching for physician information through a standardized web search.
DESIGN, SETTING, AND PARTICIPANTS: We studied 250 randomly selected internal medicine physicians registered with the Massachusetts Board of Registration in Medicine in 2008. For each physician, standardized searches via the Google search engine were performed using a sequential search strategy. The top 20 search results were analyzed, and websites that referred to the study subject were recorded and categorized. Physician rating sites were further investigated to determine the number of patient-entered reviews.
MAIN MEASURES: Number and content of websites attributable to specific physicians.
KEY RESULTS: Websites containing personal or professional information were identified for 93.6% of physicians. Among those with any web sites identified, 92.8% had professional information and 32.4% had personal information available online. Female physicians were more likely to have professional information available on the Internet than male physicians (97.5% vs. 91.7%, p=0.03), but had similar rates of available personal information (32.5% vs. 32.5%, p=ns). Among personal sites, the most common categories included social networking sites such as Facebook (10.8% of physicians), hobbies (10.0%), charitable or political donations (9.6%), and family information (8.8%). Physician rating sites were identified for 86.4% of providers, but only three physicians had more than five reviews on any given rating site.
CONCLUSIONS: Personal and professional physician information is widely available on the Internet, and often not under direct control of the individual physician. The availability of such information has implications for physician-patient relationships and suggests that physicians should monitor their online information.
BACKGROUND: Underreporting of surgical adverse events limits the ability to identify quality and safety issues. Automated screening of the clinical information system (CIS) can improve case capture and reduce dependency on self-reporting. We compared screening of a CIS to self-reporting for identifying unplanned reoperation and also examined the relationship between causality and probability of reporting.
METHODS: Between 2005 and 2009, all unplanned reoperations identified by automated screening of databases were reviewed and classified according to causality. Comparison was made to cases self-reported to departmental morbidity and mortality; conditional probability analysis assessed the likelihood of reporting as a function of causality.
RESULTS: Of 104,938 operations performed, automated CIS screening identified 1,010 cases requiring unplanned reoperation; 23.6% were self-reported to morbidity and mortality; the probability of reporting varied widely depending on causality.
CONCLUSIONS: Screening of a CIS for adverse events requiring reoperation revealed significant underreporting, with additional bias in reporting based on underlying causality.
BACKGROUND: Data on complications of gastrointestinal endoscopic procedures are limited. We evaluated prospectively the incidence and cost of hospital visits resulting from outpatient endoscopy.
METHODS: We developed an electronic medical record-based system to record automatically admissions to the emergency department (ED) within 14 days after endoscopy. Physicians evaluated all reported cases for relatedness of the ED visit to the prior endoscopy based on predetermined criteria.
RESULTS: We evaluated 6383 esophagogastroduodenoscopies (EGDs) and 11 632 colonoscopies (7392 for screening and surveillance). Among these, 419 ED visits and 266 hospitalizations occurred within 14 days after the procedure. One hundred thirty-four (32%) of the ED visits and 76 (29%) of the hospitalizations were procedure related, whereas 31 complications were recorded by standard physician reporting (P < .001). Procedure-related hospital visits occurred in 1.07%, 0.84%, and 0.95% of all EGDs, all colonoscopies, and screening colonoscopies, respectively. The mean costs were $1403 per ED visit and $10 123 per hospitalization based on Medicare standardized rates. Across the overall screening/surveillance colonoscopy program, these episodes added $48 per examination.
CONCLUSIONS: Using a novel automated system, we observed a 1% incidence of related hospital visits within 14 days of outpatient endoscopy, 2- to 3-fold higher than recent estimates. Most events were not captured by standard reporting, and strategies for automating adverse event reporting should be developed. The cost of unexpected hospital visits postendoscopy may be significant and should be taken into account in screening or surveillance programs.
Care delivery is a complex enterprise that involves multiple interactions among multiple stakeholders. Effective communication between these dispersed parties is critical to ensuring quality and safety and improves operational efficiencies. Time and motion studies in hospital settings provide strong evidence that care providers-doctors and nurses-spend a significant proportion of their time obtaining or providing information (i.e., communicating). Yet, surprisingly, no studies attempt to quantify the economic waste associated with communication inefficiencies in hospital settings at a national level. Our research focuses on developing models for quantifying the economic burden on hospitals of poor communications. We developed a conceptual model of the effects of poor communications in hospitals that isolates four outcomes: (1) efficiency of resource utilization, (2) effectiveness of core operations, (3) quality of work life, and (4) service quality, identifying specific metrics for each outcome. We developed estimates of costs associated with wasted physician time, wasted nurse time, and increase in length of stay caused by communication inefficiencies across all U.S. hospitals, using primary data collected from interviews in seven hospitals and secondary data from a literature review, the Bureau of Labor Statistics (BLS), and the Agency for Healthcare Research and Quality (AHRQ). We find that U.S. hospitals waste over $12 billion annually as a result of communication inefficiency among care providers. Increase in length of stay accounts for 53 percent of the annual economic burden. A 500-bed hospital loses over $4 million annually as a result of communication inefficiencies. We note that our estimates are conservative as they do not include all dimensions of economic waste arising from poor communications. The economic burden of communication inefficiency in U.S. hospitals is substantial. Information technologies and process redesign may help alleviate some of this burden.
We have designed and deployed a novel approach to protecting Personal Healthcare Information in environments where a data center is remote and its physical security cannot be assured. Our "KeyServer" methodology uses a server-client-server architecture to dynamically serve keys from a distant server in a separate secure data center in the US. The approach combines pre-existing and novel techniques into a layered protective barrier around compromise of patient data. We describe how this technology provides scalable security that makes security breaches highly unlikely. With some careful planning a Clinical Data Repositories fed by Electronic Health Records can be placed in relatively insecure settings, with a high-level of security surrounding data theft, even in the event of hardware theft. Such security architecture is ideal for not only developing nations, but for the evolution of health information to cloud computing platforms.
PURPOSE: Our purpose is to counter the common wisdom that doctors are refractory to change and therefore responsible for the limited use of electronic medical records.
METHODS: We draw on experience with electronic medical records in two Harvard Medical School teaching hospitals dating back to the early 1980s.
RESULTS: Doctors quickly become ardent users of electronic medical records if the software is sufficiently helpful in the care of their patients.
CONCLUSIONS: The key to enthusiastic acceptance of electronic medical records is computing that is easy to use and helpful to doctors, nurses, and other clinicians in the care of their patients.
OBJECTIVE: To assess the patient-centeredness of personal health records (PHR) and offer recommendations for best practice guidelines.
DESIGN: Semi-structured interviews were conducted in seven large early PHR adopter organizations in 2007. Organizations were purposively selected to represent a variety of US settings, including medium and large hospitals, ambulatory care facilities, insurers and health plans, government departments, and commercial sectors.
MEASUREMENTS: Patient-centeredness was assessed against a framework of care that includes: (1) respect for patient values, preferences, and expressed needs; (2) information and education; (3) access to care; (4) emotional support to relieve fear and anxiety; (5) involvement of family and friends; (6) continuity and secure transition between healthcare providers; (7) physical comfort; (8) coordination of care. Within this framework we used evidence for patient preferences (where it exists) to compare existing PHR policies, and propose a best practice model.
RESULTS: Most organizations enable many patient-centered functions such as data access for proxies and minors. No organization allows patient views of clinical progress notes, and turnaround times for PHR reporting of normal laboratory results can be up to 7 days.
CONCLUSION: Findings suggest patient-centeredness for personal health records can be improved, and recommendations are made for best practice guidelines.