Explaining accesses to electronic medical records using diagnosis information

Objective

Ensuring the security and appropriate use of patient health information contained within electronic medical records systems is challenging. Observing these difficulties, we present an addition to the explanation-based auditing system (EBAS) that attempts to determine the clinical or operational reason why accesses occur to medical records based on patient diagnosis information. Accesses that can be explained with a reason are filtered so that the compliance officer has fewer suspicious accesses to review manually.

Methods

Our hypothesis is that specific hospital employees are responsible for treating a given diagnosis. For example, Dr Carl accessed Alice''s medical record because Hem/Onc employees are responsible for chemotherapy patients. We present metrics to determine which employees are responsible for a diagnosis and quantify their confidence. The auditing system attempts to use this responsibility information to determine the reason why an access occurred. We evaluate the auditing system''s classification quality using data from the University of Michigan Health System.

Results

The EBAS correctly determines which departments are responsible for a given diagnosis. Adding this responsibility information to the EBAS increases the number of first accesses explained by a factor of two over previous work and explains over 94% of all accesses with high precision.

Conclusions

The EBAS serves as a complementary security tool for personal health information. It filters a majority of accesses such that it is more feasible for a compliance officer to review the remaining suspicious accesses manually.     

Retinal image registration and comparison for clinical decision support

Background

For eye diseases, such as glaucoma and age-related macular degeneration (ARMD), involved in long-term degeneration procedure, longitudinal comparison of retinal images is a common step for reliable diagnosis of these kinds of diseases.

Aims

To provide a retinal image registration approach for longitudinal retinal image alignment and comparison.

Method

Two image registration solutions were proposed for facing different image qualities of retinal images to make the registration methods more robust and feasible in a clinical application system.

Results

Thirty pairs of longitudinal retinal images were used for the registration test. The experiments showed both solutions provided good performance for the accurate image registrations with efficiency.

Conclusion

We proposed a set of retinal image registration solutions for longitudinal retinal image observation and comparison targeting a clinical application environment.     

“Not all my friends need to know”: a qualitative study of teenage patients,privacy, and social media

Background

The literature describes teenagers as active users of social media, who seem to care about privacy, but who also reveal a considerable amount of personal information. There have been no studies of how they manage personal health information on social media.

Objective

To understand how chronically ill teenage patients manage their privacy on social media sites.

Design

A qualitative study based on a content analysis of semistructured interviews with 20 hospital patients (12–18 years).

Results

Most teenage patients do not disclose their personal health information on social media, even though the study found a pervasive use of Facebook. Facebook is a place to be a “regular”, rather than a sick teenager. It is a place where teenage patients stay up-to-date about their social life—it is not seen as a place to discuss their diagnosis and treatment. The majority of teenage patients don''t use social media to come into contact with others with similar conditions and they don''t use the internet to find health information about their diagnosis.

Conclusions

Social media play an important role in the social life of teenage patients. They enable young patients to be “regular” teenagers. Teenage patients'' online privacy behavior is an expression of their need for self-definition and self-protection.     

Valuable Radiographic Tool for Odontogenic Jaw Keratocyst Diagnosis and Surgical Planning

Objective:

To investigate the clinical use of cone beam computed tomography in the diagnosis of patients with odontogenic jaw keratocyst and to guide computer-aided surgical treatment planning.

Methods:

Imaging, image processing, and visualization technologies were used to produce clear diagnosis, provide proper treatment, and formulate favourable prognosis. Cone beam computed tomography was used to collect medical information including site, extent, shape, and other characteristic features of a patient with large odontogenic jaw keratocyst.

Results:

The imaging technique produced excellent results in imaging, image processing and threedimensional (3D) visualization.

Conclusion:

The 3D digital reconstruction model of the odontogenic jaw keratocyst was shown intuitively.     

Twenty-seven years follow-up of a patient with congenital retinocephalofacial vascular malformation syndrome and additional congenital malformations (Bonnet-Dechaume-Blanc syndrome or Wyburn-Mason syndrome)

Purpose

Follow-up of vascular changes in a patient with congenital retinocephalofacial vascular malformation syndrome.

Methods

MRI and cerebral angiography.

Results

In a 36-year-old man, magnetic resonance im aging of the skull and cerebral angiography revealed left intracranial arteriovenous malformations. Follow-up observation of 27 years revealed no essential change of retinal and cerebral arteriovenous malformations. Additional congenital deficits in this patient were described.

Conclusion

Patients with retinal arteriovenous malformations should be early examined with neuroradiological methods.     

Patient-controlled sharing of medical imaging data across unaffiliated healthcare organizations

Background

Current image sharing is carried out by manual transportation of CDs by patients or organization-coordinated sharing networks. The former places a significant burden on patients and providers. The latter faces challenges to patient privacy.

Objective

To allow healthcare providers efficient access to medical imaging data acquired at other unaffiliated healthcare facilities while ensuring strong protection of patient privacy and minimizing burden on patients, providers, and the information technology infrastructure.

Methods

An image sharing framework is described that involves patients as an integral part of, and with full control of, the image sharing process. Central to this framework is the Patient Controlled Access-key REgistry (PCARE) which manages the access keys issued by image source facilities. When digitally signed by patients, the access keys are used by any requesting facility to retrieve the associated imaging data from the source facility. A centralized patient portal, called a PCARE patient control portal, allows patients to manage all the access keys in PCARE.

Results

A prototype of the PCARE framework has been developed by extending open-source technology. The results for feasibility, performance, and user assessments are encouraging and demonstrate the benefits of patient-controlled image sharing.

Discussion

The PCARE framework is effective in many important clinical cases of image sharing and can be used to integrate organization-coordinated sharing networks. The same framework can also be used to realize a longitudinal virtual electronic health record.

Conclusion

The PCARE framework allows prior imaging data to be shared among unaffiliated healthcare facilities while protecting patient privacy with minimal burden on patients, providers, and infrastructure. A prototype has been implemented to demonstrate the feasibility and benefits of this approach.     

Design and development of an international clinical data exchange system: the international layer function of the Dolphin Project

Objective

At present, most clinical data are exchanged between organizations within a regional system. However, people traveling abroad may need to visit a hospital, which would make international exchange of clinical data very useful.

Background

Since 2007, a collaborative effort to achieve clinical data sharing has been carried out at Zhejiang University in China and Kyoto University and Miyazaki University in Japan; each is running a regional clinical information center.

Methods

An international layer system named Global Dolphin was constructed with several key services, sharing patients'' health information between countries using a medical markup language (MML). The system was piloted with 39 test patients.

Results

The three regions above have records for 966 000 unique patients, which are available through Global Dolphin. Data exchanged successfully from Japan to China for the 39 study patients include 1001 MML files and 152 images. The MML files contained 197 free text-type paragraphs that needed human translation.

Discussion

The pilot test in Global Dolphin demonstrates that patient information can be shared across countries through international health data exchange. To achieve cross-border sharing of clinical data, some key issues had to be addressed: establishment of a super directory service across countries; data transformation; and unique one—language translation. Privacy protection was also taken into account. The system is now ready for live use.

Conclusion

The project demonstrates a means of achieving worldwide accessibility of medical data, by which the integrity and continuity of patients'' health information can be maintained.     

The inadvertent disclosure of personal health information through peer-to-peer file sharing programs

Objective

There has been a consistent concern about the inadvertent disclosure of personal information through peer-to-peer file sharing applications, such as Limewire and Morpheus. Examples of personal health and financial information being exposed have been published. We wanted to estimate the extent to which personal health information (PHI) is being disclosed in this way, and compare that to the extent of disclosure of personal financial information (PFI).

Design

After careful review and approval of our protocol by our institutional research ethics board, files were downloaded from peer-to-peer file sharing networks and manually analyzed for the presence of PHI and PFI. The geographic region of the IP addresses was determined, and classified as either USA or Canada.

Measurement

We estimated the proportion of files that contain personal health and financial information for each region. We also estimated the proportion of search terms that return files with personal health and financial information. We ascertained and discuss the ethical issues related to this study.

Results

Approximately 0.4% of Canadian IP addresses had PHI, as did 0.5% of US IP addresses. There was more disclosure of financial information, at 1.7% of Canadian IP addresses and 4.7% of US IP addresses. An analysis of search terms used in these file sharing networks showed that a small percentage of the terms would return PHI and PFI files (ie, there are people successfully searching for PFI and PHI on the peer-to-peer file sharing networks).

Conclusion

There is a real risk of inadvertent disclosure of PHI through peer-to-peer file sharing networks, although the risk is not as large as for PFI. Anyone keeping PHI on their computers should avoid installing file sharing applications on their computers, or if they have to use such tools, actively manage the risks of inadvertent disclosure of their, their family''s, their clients'', or patients'' PHI.     

Research and applications: Ontology-guided organ detection to retrieve web images of disease manifestation: towards the construction of a consumer-based health image library

Background

Visual information is a crucial aspect of medical knowledge. Building a comprehensive medical image base, in the spirit of the Unified Medical Language System (UMLS), would greatly benefit patient education and self-care. However, collection and annotation of such a large-scale image base is challenging.

Objective

To combine visual object detection techniques with medical ontology to automatically mine web photos and retrieve a large number of disease manifestation images with minimal manual labeling effort.

Methods

As a proof of concept, we first learnt five organ detectors on three detection scales for eyes, ears, lips, hands, and feet. Given a disease, we used information from the UMLS to select affected body parts, ran the pretrained organ detectors on web images, and combined the detection outputs to retrieve disease images.

Results

Compared with a supervised image retrieval approach that requires training images for every disease, our ontology-guided approach exploits shared visual information of body parts across diseases. In retrieving 2220 web images of 32 diseases, we reduced manual labeling effort to 15.6% while improving the average precision by 3.9% from 77.7% to 81.6%. For 40.6% of the diseases, we improved the precision by 10%.

Conclusions

The results confirm the concept that the web is a feasible source for automatic disease image retrieval for health image database construction. Our approach requires a small amount of manual effort to collect complex disease images, and to annotate them by standard medical ontology terms.     

Ocular Surface Changes in Primary Open Angle Glaucoma with Long Term Topical Anti Glaucoma Medication

Background

Topical life long anti glaucoma medication forms the mainstay of treatment of primary open angle glaucoma. Their long term usage can cause changes in conjunctival epithelium.

Methods

Hundred cases of primary open angle glaucoma were divided into four groups of 25 patients each. Each group was put on Timolol, Pilocarpine, Brimonidine and Latanoprost respectively. Ocular surface changes were monitored using Schirmer''s test, tear film break up time (BUT) and conjunctival impression cytology.

Result

Altered Schirmer''s test value was seen in 40% of patients and reduced tear film BUT values in 26%, at the end of one year. These changes were more in patients treated with timolol. Changes in conjunctival cytology such as decrease in goblet cell density, squamous metaplasia and presence of inflammatory cells were seen in significant number of patients at the end of one year treatment. There was direct relation of duration of treatment to various ocular surface changes.

Conclusion

Ocular surface changes are seen in significant number of patients of primary open angle glaucoma at the end of one year follow up with topical anti glaucoma therapy. Conjunctival impression cytology is a non invasive technique to monitor these changes.Key Words: Primary open angle glaucoma, Ocular surface changes, Goblet cell density, Squamous metaplasia     

Research and applications: MilxXplore: a web-based system to explore large imaging datasets

Objective

As large-scale medical imaging studies are becoming more common, there is an increasing reliance on automated software to extract quantitative information from these images. As the size of the cohorts keeps increasing with large studies, there is a also a need for tools that allow results from automated image processing and analysis to be presented in a way that enables fast and efficient quality checking, tagging and reporting on cases in which automatic processing failed or was problematic.

Materials and methods

MilxXplore is an open source visualization platform, which provides an interface to navigate and explore imaging data in a web browser, giving the end user the opportunity to perform quality control and reporting in a user friendly, collaborative and efficient way.

Discussion

Compared to existing software solutions that often provide an overview of the results at the subject''s level, MilxXplore pools the results of individual subjects and time points together, allowing easy and efficient navigation and browsing through the different acquisitions of a subject over time, and comparing the results against the rest of the population.

Conclusions

MilxXplore is fast, flexible and allows remote quality checks of processed imaging data, facilitating data sharing and collaboration across multiple locations, and can be easily integrated into a cloud computing pipeline. With the growing trend of open data and open science, such a tool will become increasingly important to share and publish results of imaging analysis.     

Comorbidities in combined retinal artery and vein occlusions

Background

Several general diseases cause blindness in patients with simultaneous combined retinal artery and vein occlusion.

Methods/patients

We examined 14 patients with acute unilateral visual loss due to combined retinal artery and venous occlusions. All 14 patients presented at the Polyclinic over a period of about 3 years. Fluorescein angiography was carried out in 12 patients to confirm the diagnosis. Ten patients underwent Doppler sonography and 11 echocardiography.

Results

Concerning systemic diseases, 11 of our 14 patients presented several cardiovascular risk factors, i.e., immunocytoma and arterial hypertension and hypercholesterolemia in one patient; another patient had chronic bronchitis, tachycardia and hypercholesterolemia. Six patients presented coagulation anomalies, and eight patients had arterial hypertension.Doppler sonography revealed normal carotid arteries in nine of ten patients. In 8 of 11 patients, echocardiography displayed no cardiac abnormalities.Ophthalmoscopy revealed no emboli in any of these patients.

Conclusion

Unilateral simultaneous combined incomplete retinal artery and venous occlusions should be considered as one entity. Eleven of our patients presented comorbidities reflecting several cardiovascular risk factors. Immunological diseases, malignancies and coagulopathies can cause this ocular disorder, resulting in blindness. No emboli were found in any of these patients. Patients suffering from acute visual loss must be examined for the presence of systemic diseases to enable therapy at an early stage.     

Protecting Privacy Using k-Anonymity

Objective

There is increasing pressure to share health information and even make it publicly available. However, such disclosures of personal health information raise serious privacy concerns. To alleviate such concerns, it is possible to anonymize the data before disclosure. One popular anonymization approach is k-anonymity. There have been no evaluations of the actual re-identification probability of k-anonymized data sets.

Design

Through a simulation, we evaluated the re-identification risk of k-anonymization and three different improvements on three large data sets.

Measurement

Re-identification probability is measured under two different re-identification scenarios. Information loss is measured by the commonly used discernability metric.

Results

For one of the re-identification scenarios, k-Anonymity consistently over-anonymizes data sets, with this over-anonymization being most pronounced with small sampling fractions. Over-anonymization results in excessive distortions to the data (i.e., high information loss), making the data less useful for subsequent analysis. We found that a hypothesis testing approach provided the best control over re-identification risk and reduces the extent of information loss compared to baseline k-anonymity.

Conclusion

Guidelines are provided on when to use the hypothesis testing approach instead of baseline k-anonymity.     

Research and applications: Imaging informatics for consumer health: towards a radiology patient portal

Objective

With the increased routine use of advanced imaging in clinical diagnosis and treatment, it has become imperative to provide patients with a means to view and understand their imaging studies. We illustrate the feasibility of a patient portal that automatically structures and integrates radiology reports with corresponding imaging studies according to several information orientations tailored for the layperson.

Methods

The imaging patient portal is composed of an image processing module for the creation of a timeline that illustrates the progression of disease, a natural language processing module to extract salient concepts from radiology reports (73% accuracy, F₁ score of 0.67), and an interactive user interface navigable by an imaging findings list. The portal was developed as a Java-based web application and is demonstrated for patients with brain cancer.

Results and discussion

The system was exhibited at an international radiology conference to solicit feedback from a diverse group of healthcare professionals. There was wide support for educating patients about their imaging studies, and an appreciation for the informatics tools used to simplify images and reports for consumer interpretation. Primary concerns included the possibility of patients misunderstanding their results, as well as worries regarding accidental improper disclosure of medical information.

Conclusions

Radiologic imaging composes a significant amount of the evidence used to make diagnostic and treatment decisions, yet there are few tools for explaining this information to patients. The proposed radiology patient portal provides a framework for organizing radiologic results into several information orientations to support patient education.     

Information needs of case managers caring for persons living with HIV

Objective

The goals of this study were to explore the information needs of case managers who provide services to persons living with HIV (PLWH) and to assess the applicability of the Information Needs Event Taxonomy in a new population.

Design

The study design was observational with data collection via an online survey.

Measurements

Responses to open-ended survey questions about the information needs of case managers (n=94) related to PLWH of three levels of care complexity were categorized using the Information Needs Event Taxonomy.

Results

The most frequently identified needs were related to patient education resources (33%), patient data (23%), and referral resources (22%) accounting for 79% of all (N=282) information needs.

Limitations

Study limitations include selection bias, recall bias, and a relatively narrow focus of the study on case-manager information needs in the context of caring for PLWH.

Conclusion

The study findings contribute to the evidence base regarding information needs in the context of patient interactions by: (1) supporting the applicability of the Information Needs Event Taxonomy and extending it through addition of a new generic question; (2) providing a foundation for the addition of context-specific links to external information resources within information systems; (3) applying a new approach for elicitation of information needs; and (4) expanding the literature regarding addressing information needs in community-based settings for HIV services.     

Translating Mendelian and complex inheritance of Alzheimer's disease genes for predicting unique personal genome variants

Objective

Although trait-associated genes identified as complex versus single-gene inheritance differ substantially in odds ratio, the authors nonetheless posit that their mechanistic concordance can reveal fundamental properties of the genetic architecture, allowing the automated interpretation of unique polymorphisms within a personal genome.

Materials and methods

An analytical method, SPADE-gen, spanning three biological scales was developed to demonstrate the mechanistic concordance between Mendelian and complex inheritance of Alzheimer''s disease (AD) genes: biological functions (BP), protein interaction modeling, and protein domain implicated in the disease-associated polymorphism.

Results

Among Gene Ontology (GO) biological processes (BP) enriched at a false detection rate <5% in 15 AD genes of Mendelian inheritance (Online Mendelian Inheritance in Man) and independently in those of complex inheritance (25 host genes of intragenic AD single-nucleotide polymorphisms confirmed in genome-wide association studies), 16 overlapped (empirical p=0.007) and 45 were similar (empirical p<0.009; information theory). SPAN network modeling extended the canonical pathway of AD (KEGG) with 26 new protein interactions (empirical p<0.0001).

Discussion

The study prioritized new AD-associated biological mechanisms and focused the analysis on previously unreported interactions associated with the biological processes of polymorphisms that affect specific protein domains within characterized AD genes and their direct interactors using (1) concordant GO-BP and (2) domain interactions within STRING protein–protein interactions corresponding to the genomic location of the AD polymorphism (eg, EPHA1, APOE, and CD2AP).

Conclusion

These results are in line with unique-event polymorphism theory, indicating how disease-associated polymorphisms of Mendelian or complex inheritance relate genetically to those observed as ‘unique personal variants’. They also provide insight for identifying novel targets, for repositioning drugs, and for personal therapeutics.     

BoB,a best-of-breed automated text de-identification system for VHA clinical documents

Objective

De-identification allows faster and more collaborative clinical research while protecting patient confidentiality. Clinical narrative de-identification is a tedious process that can be alleviated by automated natural language processing methods. The goal of this research is the development of an automated text de-identification system for Veterans Health Administration (VHA) clinical documents.

Materials and methods

We devised a novel stepwise hybrid approach designed to improve the current strategies used for text de-identification. The proposed system is based on a previous study on the best de-identification methods for VHA documents. This best-of-breed automated clinical text de-identification system (aka BoB) tackles the problem as two separate tasks: (1) maximize patient confidentiality by redacting as much protected health information (PHI) as possible; and (2) leave de-identified documents in a usable state preserving as much clinical information as possible.

Results

We evaluated BoB with a manually annotated corpus of a variety of VHA clinical notes, as well as with the 2006 i2b2 de-identification challenge corpus. We present evaluations at the instance- and token-level, with detailed results for BoB''s main components. Moreover, an existing text de-identification system was also included in our evaluation.

Discussion

BoB''s design efficiently takes advantage of the methods implemented in its pipeline, resulting in high sensitivity values (especially for sensitive PHI categories) and a limited number of false positives.

Conclusions

Our system successfully addressed VHA clinical document de-identification, and its hybrid stepwise design demonstrates robustness and efficiency, prioritizing patient confidentiality while leaving most clinical information intact.     

A method and knowledge base for automated inference of patient problems from structured data in an electronic medical record

Background

Accurate knowledge of a patient''s medical problems is critical for clinical decision making, quality measurement, research, billing and clinical decision support. Common structured sources of problem information include the patient problem list and billing data; however, these sources are often inaccurate or incomplete.

Objective

To develop and validate methods of automatically inferring patient problems from clinical and billing data, and to provide a knowledge base for inferring problems.

Study design and methods

We identified 17 target conditions and designed and validated a set of rules for identifying patient problems based on medications, laboratory results, billing codes, and vital signs. A panel of physicians provided input on a preliminary set of rules. Based on this input, we tested candidate rules on a sample of 100 000 patient records to assess their performance compared to gold standard manual chart review. The physician panel selected a final rule for each condition, which was validated on an independent sample of 100 000 records to assess its accuracy.

Results

Seventeen rules were developed for inferring patient problems. Analysis using a validation set of 100 000 randomly selected patients showed high sensitivity (range: 62.8–100.0%) and positive predictive value (range: 79.8–99.6%) for most rules. Overall, the inference rules performed better than using either the problem list or billing data alone.

Conclusion

We developed and validated a set of rules for inferring patient problems. These rules have a variety of applications, including clinical decision support, care improvement, augmentation of the problem list, and identification of patients for research cohorts.     

Evaluating the utility of syndromic surveillance algorithms for screening to detect potentially clonal hospital infection outbreaks

Objective

The authors evaluated algorithms commonly used in syndromic surveillance for use as screening tools to detect potentially clonal outbreaks for review by infection control practitioners.

Design

Study phase 1 applied four aberrancy detection algorithms (CUSUM, EWMA, space-time scan statistic, and WSARE) to retrospective microbiologic culture data, producing a list of past candidate outbreak clusters. In phase 2, four infectious disease physicians categorized the phase 1 algorithm-identified clusters to ascertain algorithm performance. In phase 3, project members combined the algorithms to create a unified screening system and conducted a retrospective pilot evaluation.

Measurements

The study calculated recall and precision for each algorithm, and created precision-recall curves for various methods of combining the algorithms into a unified screening tool.

Results

Individual algorithm recall and precision ranged from 0.21 to 0.31 and from 0.053 to 0.29, respectively. Few candidate outbreak clusters were identified by more than one algorithm. The best method of combining the algorithms yielded an area under the precision-recall curve of 0.553. The phase 3 combined system detected all infection control-confirmed outbreaks during the retrospective evaluation period.

Limitations

Lack of phase 2 reviewers'' agreement indicates that subjective expert review was an imperfect gold standard. Less conservative filtering of culture results and alternate parameter selection for each algorithm might have improved algorithm performance.

Conclusion

Hospital outbreak detection presents different challenges than traditional syndromic surveillance. Nevertheless, algorithms developed for syndromic surveillance have potential to form the basis of a combined system that might perform clinically useful hospital outbreak screening.