Publications by authors named "Richard Schreiber"

67 Publications

Privacy versus Convenience: A Historical Perspective, Analysis of Risks, and an Informatics Call to Action.

Appl Clin Inform 2021 Mar 5;12(2):274-284. Epub 2021 May 5.

Penn State Health Holy Spirit Medical Center, Information Services, Geisinger Commonwealth School of Medicine, Camp Hill, Pennsylvania, United States.

Background:  The pace of technological change dwarfs the pace of social and policy change. This mismatch allows for individual harm from lack of recognition of changes in societal context. The value of privacy has not kept pace with changes in technology over time; individuals seem to discount how loss of privacy can lead to directed personal harm.

Objective:  The authors examined individuals sharing personal data with mobile health applications (mHealth apps) and compared the current digital context to the historical context of harm. The authors make recommendations to informatics professionals to support consumers who wish to use mHealth apps in a manner that balances convenience with personal privacy to reduce the risk of harm.

Methods:  A literature search focused by a historical perspective of risk of harm was performed throughout the development of this paper. Two case studies highlight questions a consumer might ask to assess the risk of harm posed by mobile health applications.

Results:  A historical review provides the context for the collective human experience of harm. We then encapsulate current perceptions and views of privacy and list potential risks created by insufficient attention to privacy management.

Discussion:  The results provide a historical context for individuals to view the risk of harm and shed light on potential emotional, reputational, economic, and physical harms that can result from naïve use of mHealth apps. We formulate implications for clinical informaticists.

Conclusion:  Concepts of both harm and privacy have changed substantially over the past 20 years. Technology provides methods to invade privacy and cause harm unimaginable a few decades ago. Only recently have the consequences become clearer. The current regulatory framework is extremely limited. Given the risks of harm and limited awareness, we call upon informatics professionals to support more privacy education and protections and increase mHealth transparency about data usage.
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http://dx.doi.org/10.1055/s-0041-1727197DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8099487PMC
March 2021

Primary Care Informatics Response to Covid-19 Pandemic: Adaptation, Progress, and Lessons from Four Countries with High ICT Development.

Yearb Med Inform 2021 Apr 21. Epub 2021 Apr 21.

Nuffield Department of Primary Care Health Sciences, University of Oxford, UK.

Objective: Internationally, primary care practice had to transform in response to the COVID pandemic. Informatics issues included access, privacy, and security, as well as patient concerns of equity, safety, quality, and trust. This paper describes progress and lessons learned.

Methods: IMIA Primary Care Informatics Working Group members from Australia, Canada, United Kingdom and United States developed a standardised template for collection of information. The template guided a rapid literature review. We also included experiential learning from primary care and public health perspectives.

Results: All countries responded rapidly. Common themes included rapid reductions then transformation to virtual visits, pausing of non-COVID related informatics projects, all against a background of non-standardized digital development and disparate territory or state regulations and guidance. Common barriers in these four and in less-resourced countries included disparities in internet access and availability including bandwidth limitations when internet access was available, initial lack of coding standards, and fears of primary care clinicians that patients were delaying care despite the availability of televisits.

Conclusions: Primary care clinicians were able to respond to the COVID crisis through telehealth and electronic record enabled change. However, the lack of coordinated national strategies and regulation, assurance of financial viability, and working in silos remained limitations. The potential for primary care informatics to transform current practice was highlighted. More research is needed to confirm preliminary observations and trends noted.
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http://dx.doi.org/10.1055/s-0041-1726489DOI Listing
April 2021

Post-traumatic stress as a determinant of quality of life in pediatric solid-organ transplant recipients.

Pediatr Transplant 2021 Mar 26:e14005. Epub 2021 Mar 26.

Pediatric Multi-Organ Transplant Program, BC Children's Hospital, Vancouver, BC, Canada.

Living with end-stage organ failure is associated with an accumulation of traumatic medical events, and despite recovery after solid-organ transplantation (SOT), many children continue to exhibit lower quality of life (QOL). Few studies have examined the relationship between post-traumatic stress disorder (PTSD) and QOL among pediatric SOT recipients. We conducted a retrospective, cross-sectional review of 61 pediatric SOT recipients (12 heart, 30 kidney, and 19 liver) to evaluate the association of PTSD with self-reported QOL. PTSD was measured by the Child Trauma Screening Questionnaire (CTSQ), and QOL was measured using the PedsQL and PedsQL Transplant Module (PedsQL-TM) surveys. Demographics, baseline, and contemporaneous factors were tested for independent association. SOT recipients were 15.2 (12.1-17.6) years old at survey completion. Median CTSQ score was 2 (1-3), highest in kidney recipients, and 13% were identified as high risk for PTSD. Median PedsQL score was 83 (70-91) and significantly associated with the CTSQ score (r = -.68, p < .001). Median PedsQL Transplant Module score was 89 (83-95) and similarly associated with the CTSQ score (r = -.64, p < .001). Age at time of surveys and presence of any disability were also independently associated with PedsQL and PedsQL-TM, respectively. When adjusted for Emotional Functioning, CTSQ remained associated with PedsQL subscores (r = -.65, p < .001). Trauma symptoms are a major modifiable risk factor for lower self-perceived QOL and represent a potentially important target for post-transplant rehabilitation. Additional research is needed to understand the root contributors to PTSD and potential treatments in this population.
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http://dx.doi.org/10.1111/petr.14005DOI Listing
March 2021

Algorithmic Detection of Boolean Logic Errors in Clinical Decision Support Statements.

Appl Clin Inform 2021 01 10;12(1):182-189. Epub 2021 Mar 10.

School of Biomedical Informatics, University of Texas Health Science Center at Houston, Houston, Texas, United States.

Objective: Clinical decision support (CDS) can contribute to quality and safety. Prior work has shown that errors in CDS systems are common and can lead to unintended consequences. Many CDS systems use Boolean logic, which can be difficult for CDS analysts to specify accurately. We set out to determine the prevalence of certain types of Boolean logic errors in CDS statements.

Methods: Nine health care organizations extracted Boolean logic statements from their Epic electronic health record (EHR). We developed an open-source software tool, which implemented the Espresso logic minimization algorithm, to identify three classes of logic errors.

Results: Participating organizations submitted 260,698 logic statements, of which 44,890 were minimized by Espresso. We found errors in 209 of them. Every participating organization had at least two errors, and all organizations reported that they would act on the feedback.

Discussion: An automated algorithm can readily detect specific categories of Boolean CDS logic errors. These errors represent a minority of CDS errors, but very likely require correction to avoid patient safety issues. This process found only a few errors at each site, but the problem appears to be widespread, affecting all participating organizations.

Conclusion: Both CDS implementers and EHR vendors should consider implementing similar algorithms as part of the CDS authoring process to reduce the number of errors in their CDS interventions.
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http://dx.doi.org/10.1055/s-0041-1722918DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7946596PMC
January 2021

Reduce Burnout by Eliminating Billing Documentation Rules to Let Clinicians be Clinicians: A Clarion Call to Informaticists.

Appl Clin Inform 2021 01 3;12(1):73-75. Epub 2021 Feb 3.

Department of Medicine, Geisinger Commonwealth School of Medicine, Penn State Health Holy Spirit Medical Center, Camp Hill, Pennsylvania, United States.

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http://dx.doi.org/10.1055/s-0041-1722872DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7857966PMC
January 2021

Idiopathic splenomegaly in childhood and the spectrum of RAS-associated lymphoproliferative disease: a case report.

BMC Pediatr 2021 Jan 21;21(1):45. Epub 2021 Jan 21.

Department of Pediatrics, British Columbia Children's Hospital, The University of British Columbia, 950 West 28th Avenue, V5Z 4H4, Vancouver, BC, Canada.

Background: KRAS (KRAS proto-oncogene, GTPase; OMIM: 190,070) encodes one of three small guanosine triphosphatase proteins belonging to the RAS family. This group of proteins is responsible for cell proliferation, differentiation and inhibition of apoptosis. Gain-of-function variants in KRAS are commonly found in human cancers. Non-malignant somatic KRAS variants underlie a subset of RAS-associated autoimmune leukoproliferative disorders (RALD). RALD is characterized by splenomegaly, persistent monocytosis, hypergammaglobulinemia and cytopenia, but can also include autoimmune features and lymphadenopathy. In this report, we describe a non-malignant somatic variant in KRAS with prominent clinical features of massive splenomegaly, thrombocytopenia and lymphopenia.

Case Presentation: A now-11-year-old girl presented in early childhood with easy bruising and bleeding, but had an otherwise unremarkable medical history. After consulting for the first time at 5 years of age, she was discovered to have massive splenomegaly. Clinical follow-up revealed thrombocytopenia, lymphopenia and increased polyclonal immunoglobulins and C-reactive protein. The patient had an unremarkable bone marrow biopsy, flow cytometry showed no indication of expanded double negative T-cells, while malignancy and storage disorders were also excluded. When the patient was 8 years old, whole exome sequencing performed on DNA derived from whole blood revealed a heterozygous gain-of-function variant in KRAS (NM_004985.5:c.37G > T; (p.G13C)). The variant was absent from DNA derived from a buccal swab and was thus determined to be somatic.

Conclusions: This case of idiopathic splenomegaly in childhood due to a somatic variant in KRAS expands our understanding of the clinical spectrum of RAS-associated autoimmune leukoproliferative disorder and emphasizes the value of securing a molecular diagnosis in children with unusual early-onset presentations with a suspected monogenic origin.
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http://dx.doi.org/10.1186/s12887-021-02508-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7819237PMC
January 2021

Transitions from One Electronic Health Record to Another: Challenges, Pitfalls, and Recommendations.

Appl Clin Inform 2020 10 11;11(5):742-754. Epub 2020 Nov 11.

Physician Informatics and Department of Medicine, Geisinger Holy Spirit, Geisinger Commonwealth School of Medicine, Camp Hill, Pennsylvania, United States.

Objective: We address the challenges of transitioning from one electronic health record (EHR) to another-a near ubiquitous phenomenon in health care. We offer mitigating strategies to reduce unintended consequences, maximize patient safety, and enhance health care delivery.

Methods: We searched PubMed and other sources to identify articles describing EHR-to-EHR transitions. We combined these references with the authors' extensive experience to construct a conceptual schema and to offer recommendations to facilitate transitions.

Results: Our PubMed query retrieved 1,351 citations: 43 were relevant for full paper review and 18 met the inclusion criterion of focus on EHR-to-EHR transitions. An additional PubMed search yielded 1,014 citations, for which we reviewed 74 full papers and included 5. We supplemented with additional citations for a total of 70 cited. We distinguished 10 domains in the literature that overlap yet present unique and salient opportunities for successful transitions and for problem mitigation.

Discussion: There is scant literature concerning EHR-to-EHR transitions. Identified challenges include financial burdens, personnel resources, patient safety threats from limited access to legacy records, data integrity during migration, cybersecurity, and semantic interoperability. Transition teams must overcome inadequate human infrastructure, technical challenges, security gaps, unrealistic providers' expectations, workflow changes, and insufficient training and support-all factors affecting potential clinician burnout.

Conclusion: EHR transitions are remarkably expensive, laborious, personnel devouring, and time consuming. The paucity of references in comparison to the topic's salience reinforces the necessity for this type of review and analysis. Prudent planning may streamline EHR transitions and reduce expenses. Mitigating strategies, such as preservation of legacy data, managing expectations, and hiring short-term specialty consultants can overcome some of the greatest hurdles. A new medical subject headings (MeSH) term for EHR transitions would facilitate further research on this topic.
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http://dx.doi.org/10.1055/s-0040-1718535DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7657707PMC
October 2020

An Alternate Viewpoint on Information Sharing: There is no Paradox.

Appl Clin Inform 2020 08 2;11(4):578-579. Epub 2020 Sep 2.

Physician Informatics and Department of Medicine, Geisinger Holy Spirit, Geisinger Commonwealth School of Medicine, Camp Hill, Pennsylvania, United States.

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http://dx.doi.org/10.1055/s-0040-1715652DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7467840PMC
August 2020

Ethics and informatics in the age of COVID-19: challenges and recommendations for public health organization and public policy.

J Am Med Inform Assoc 2021 01;28(1):184-189

University of Pittsburgh, Pittsburgh, Pennsylvania, USA.

The COVID-19 pandemic response in the United States has exposed significant gaps in information systems and processes that prevent timely clinical and public health decision-making. Specifically, the use of informatics to mitigate the spread of SARS-CoV-2, support COVID-19 care delivery, and accelerate knowledge discovery bring to the forefront issues of privacy, surveillance, limits of state powers, and interoperability between public health and clinical information systems. Using a consensus-building process, we critically analyze informatics-related ethical issues in light of the pandemic across 3 themes: (1) public health reporting and data sharing, (2) contact tracing and tracking, and (3) clinical scoring tools for critical care. We provide context and rationale for ethical considerations and recommendations that are actionable during the pandemic and conclude with recommendations calling for longer-term, broader change (beyond the pandemic) for public health organization and policy reform.
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http://dx.doi.org/10.1093/jamia/ocaa188DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7454584PMC
January 2021

Physical activity and its correlates in a pediatric solid-organ transplant population.

Pediatr Transplant 2020 08 11;24(5):e13745. Epub 2020 Jun 11.

Pediatric Nephrology, BC Children's Hospital, University of British Columbia, Vancouver, BC, Canada.

PA has been shown to have benefits in SOT patients. Studies assessing physical activity levels and its correlates in a pediatric solid-organ transplant population are limited. The aim of this study was to assess PA levels and identify baseline and contemporaneous factors that contribute to PA in a pediatric SOT population. A retrospective cross-sectional review was performed on 58 pediatric transplant patients (16 heart, 29 kidney, and 13 liver transplant). PA was measured by PAQ-C or PAQ-A. Demographics, baseline, and contemporaneous factors were collected. There were no significant differences in baseline and contemporaneous characteristics between heart, kidney, and liver transplant recipients. SOT recipients were 15.2 [12.3-17.3] years old at time of completing the PAQ. Median PAQ score was 2.2 [1.7-2.9]. There were no significant differences in PAQ scores between organ transplant type or between genders. Lower PAQ score was associated with sensory disability (9 vs 49 without disability; P = <.01) and age at time of completing the PAQ (r = -.50, P = <.01). These results suggest that older age at time of completing the PAQ and presence of sensory disability may influence PA levels in the pediatric SOT population.
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http://dx.doi.org/10.1111/petr.13745DOI Listing
August 2020

Ethical Use of Electronic Health Record Data and Artificial Intelligence: Recommendations of the Primary Care Informatics Working Group of the International Medical Informatics Association.

Yearb Med Inform 2020 Aug 17;29(1):51-57. Epub 2020 Apr 17.

Clnical Informatics and Health Outcomes Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, Eagle House, 7 Walton Well Road, Oxford, OX2 6ED, UK.

Objective: To create practical recommendations for the curation of routinely collected health data and artificial intelligence (AI) in primary care with a focus on ensuring their ethical use.

Methods: We defined data curation as the process of management of data throughout its lifecycle to ensure it can be used into the future. We used a literature review and Delphi exercises to capture insights from the Primary Care Informatics Working Group (PCIWG) of the International Medical Informatics Association (IMIA).

Results: We created six recommendations: (1) Ensure consent and formal process to govern access and sharing throughout the data life cycle; (2) Sustainable data creation/collection requires trust and permission; (3) Pay attention to Extract-Transform-Load (ETL) processes as they may have unrecognised risks; (4) Integrate data governance and data quality management to support clinical practice in integrated care systems; (5) Recognise the need for new processes to address the ethical issues arising from AI in primary care; (6) Apply an ethical framework mapped to the data life cycle, including an assessment of data quality to achieve effective data curation.

Conclusions: The ethical use of data needs to be integrated within the curation process, hence running throughout the data lifecycle. Current information systems may not fully detect the risks associated with ETL and AI; they need careful scrutiny. With distributed integrated care systems where data are often used remote from documentation, harmonised data quality assessment, management, and governance is important. These recommendations should help maintain trust and connectedness in contemporary information systems and planned developments.
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http://dx.doi.org/10.1055/s-0040-1701980DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7442527PMC
August 2020

Natural Language Processing to Extract Meaningful Information from Patient Experience Feedback.

Appl Clin Inform 2020 03 1;11(2):242-252. Epub 2020 Apr 1.

Physician Informatics and Department of Medicine, Geisinger Health System, Geisinger Commonwealth School of Medicine, Camp Hill, Pennsylvania, United States.

Background: Due to reimbursement tied in part to patients' perception of their care, hospitals continue to stress obtaining patient feedback and understanding it to plan interventions to improve patients' experience. We demonstrate the use of natural language processing (NLP) to extract meaningful information from patient feedback obtained through Press Ganey surveys.

Methods: The first step was to standardize textual data programmatically using NLP libraries. This included correcting spelling mistakes, converting text to lowercase, and removing words that most likely did not carry useful information. Next, we converted numeric data pertaining to each category based on sentiment and care aspect into charts. We selected care aspect categories where there were more negative comments for more in-depth study. Using NLP, we made tables of most frequently appearing words, adjectives, and bigrams. Comments with frequent words/combinations underwent further study manually to understand factors contributing to negative patient feedback. We then used the positive and negative comments as the training dataset for a neural network to perform sentiment analysis on sentences obtained by splitting mixed reviews.

Results: We found that most of the comments were about doctors and nurses, confirming the important role patients ascribed to these two in patient care. "Room," "discharge" and "tests and treatments" were the three categories that had more negative than positive comments. We then tabulated commonly appearing words, adjectives, and two-word combinations. We found that climate control, housekeeping and noise levels in the room, time delays in discharge paperwork, conflicting information about discharge plan, frequent blood draws, and needle sticks were major contributors to negative patient feedback. None of this information was available from numeric data alone.

Conclusion: NLP is an effective tool to gain insight from raw textual patient feedback to extract meaningful information, making it a powerful tool in processing large amounts of patient feedback efficiently.
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http://dx.doi.org/10.1055/s-0040-1708049DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7113005PMC
March 2020

Newborn Screening for Biliary Atresia.

JAMA 2020 03;323(12):1137-1138

BC Children's Hospital, University of British Columbia, Vancouver, Canada.

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http://dx.doi.org/10.1001/jama.2020.2727DOI Listing
March 2020

Fontan-Associated Liver Disease: Spectrum of Disease in Children and Adolescents.

J Am Heart Assoc 2020 01 4;9(1):e012529. Epub 2020 Jan 4.

Division of Cardiology Department of Pediatrics British Columbia Children's Hospital and University of British Columbia Vancouver British Columbia Canada.

Background Information is evolving on liver disease in pediatric patients with Fontan physiology. The purpose of this investigation is to evaluate the spectrum of liver disease in a pediatric population of patients with Fontan physiology and evaluate transient elastography (TE) as a noninvasive marker of liver disease. Methods and Results We prospectively enrolled all children with Fontan physiology. All patients underwent comprehensive liver evaluation including liver enzymes (alanine aminotransferase, aspartate aminotransferase, gamma-glutamyl transferase, alkaline phosphatase), aspartate transaminase to platelet ratio index, albumin, bilirubin, international normalized ratio, complete blood cell count, abdominal ultrasound, and TE. Transjugular liver biopsies and hemodynamic measurements were performed in a subset of patients. A total of 76 children (median, 11.7; interquartile range, 8.4-14.8 [56% male]) were evaluated, with 17 having a transjugular liver biopsy (median 14.8 years; interquartile range, 14.3-17.4). All biopsies showed pathological changes. The severity of liver pathology did not correlate with TE. There was a positive correlation between TE and time since Fontan (=0.42, <0.01), aspartate transaminase to platelet ratio index (=0.29, =0.02), aspartate transaminase (=-0.42, <0.01), and platelets (=-0.42, <0.01). Splenomegaly on abdominal ultrasound was correlated with TE (=-2.2, =0.03), low platelet count (=1.9, =0.05), low aspartate transaminase (=1.9, =0.02), and low alkaline phosphatase (=2.4, =0.02). Conclusions Liver disease was ubiquitous in our cohort of pediatric patients with Fontan Physiology. Given the correlation between TE and time from Fontan, TE shows potential as a prospective marker of liver pathology. However, individual measurements with TE do not correlate with the severity of pathology. Given the prevalence of liver disease in this population, protective measures of liver health as well as routine liver health surveillance should be implemented with consideration for hepatology consultation and biopsy in the event of abnormal liver biochemical markers or imaging.
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http://dx.doi.org/10.1161/JAHA.119.012529DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6988152PMC
January 2020

Reducing Alert Burden in Electronic Health Records: State of the Art Recommendations from Four Health Systems.

Appl Clin Inform 2020 01 1;11(1):1-12. Epub 2020 Jan 1.

Physician Informatics and Department of Medicine, Geisinger Health System, Geisinger Holy Spirit, Camp Hill, Pennsylvania, United States.

Background: Electronic health record (EHR) alert fatigue, while widely recognized as a concern nationally, lacks a corresponding comprehensive mitigation plan.

Objectives: The goal of this manuscript is to provide practical guidance to clinical informaticists and other health care leaders who are considering creating a program to manage EHR alerts.

Methods: This manuscript synthesizes several approaches and recommendations for better alert management derived from four U.S. health care institutions that presented their experiences and recommendations at the American Medical Informatics Association 2019 Clinical Informatics Conference in Atlanta, Georgia, United States. The assembled health care institution leaders represent academic, pediatric, community, and specialized care domains. We describe governance and management, structural concepts and components, and human-computer interactions with alerts, and make recommendations regarding these domains based on our experience supplemented with literature review. This paper focuses on alerts that impact bedside clinicians.

Results: The manuscript addresses the range of considerations relevant to alert management including a summary of the background literature about alerts, alert governance, alert metrics, starting an alert management program, approaches to evaluating alerts prior to deployment, and optimization of existing alerts. The manuscript includes examples of alert optimization successes at two of the represented institutions. In addition, we review limitations on the ability to evaluate alerts in the current state and identify opportunities for further scholarship.

Conclusion: Ultimately, alert management programs must strive to meet common goals of improving patient care, while at the same time decreasing the alert burden on clinicians. In so doing, organizations have an opportunity to promote the wellness of patients, clinicians, and EHRs themselves.
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http://dx.doi.org/10.1055/s-0039-3402715DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6938713PMC
January 2020

Structured override reasons for drug-drug interaction alerts in electronic health records.

J Am Med Inform Assoc 2019 10;26(10):934-942

School of Biomedical Informatics, University of Texas Health Science Center at Houston, Houston, Texas, USA.

Objective: The study sought to determine availability and use of structured override reasons for drug-drug interaction (DDI) alerts in electronic health records.

Materials And Methods: We collected data on DDI alerts and override reasons from 10 clinical sites across the United States using a variety of electronic health records. We used a multistage iterative card sort method to categorize the override reasons from all sites and identified best practices.

Results: Our methodology established 177 unique override reasons across the 10 sites. The number of coded override reasons at each site ranged from 3 to 100. Many sites offered override reasons not relevant to DDIs. Twelve categories of override reasons were identified. Three categories accounted for 78% of all overrides: "will monitor or take precautions," "not clinically significant," and "benefit outweighs risk."

Discussion: We found wide variability in override reasons between sites and many opportunities to improve alerts. Some override reasons were irrelevant to DDIs. Many override reasons attested to a future action (eg, decreasing a dose or ordering monitoring tests), which requires an additional step after the alert is overridden, unless the alert is made actionable. Some override reasons deferred to another party, although override reasons often are not visible to other users. Many override reasons stated that the alert was inaccurate, suggesting that specificity of alerts could be improved.

Conclusions: Organizations should improve the options available to providers who choose to override DDI alerts. DDI alerting systems should be actionable and alerts should be tailored to the patient and drug pairs.
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http://dx.doi.org/10.1093/jamia/ocz033DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6748816PMC
October 2019

Artificial Intelligence in Primary Health Care: Perceptions, Issues, and Challenges.

Yearb Med Inform 2019 Aug 25;28(1):41-46. Epub 2019 Apr 25.

Department of Clinical & Experimental Medicine, University of Surrey, Guildford, Surrey, UK.

Background: Artificial intelligence (AI) is heralded as an approach that might augment or substitute for the limited processing power of the human brain of primary health care (PHC) professionals. However, there are concerns that AI-mediated decisions may be hard to validate and challenge, or may result in rogue decisions.

Objective: To form consensus about perceptions, issues, and challenges of AI in primary care.

Method: A three-round Delphi study was conducted. Round 1 explored experts' viewpoints on AI in PHC (n=20). Round 2 rated the appropriateness of statements arising from round one (n=12). The third round was an online panel discussion of findings (n=8) with the members of both the International Medical Informatics Association and the European Federation of Medical Informatics Primary Health Care Informatics Working Groups.

Results: PHC and informatics experts reported AI has potential to improve managerial and clinical decisions and processes, and this would be facilitated by common data standards. The respondents did not agree that AI applications should learn and adapt to clinician preferences or behaviour and they did not agree on the extent of AI potential for harm to patients. It was more difficult to assess the impact of AI-based applications on continuity and coordination of care.

Conclusion: While the use of AI in medicine should enhance healthcare delivery, we need to ensure meticulous design and evaluation of AI applications. The primary care informatics community needs to be proactive and to guide the ethical and rigorous development of AI applications so that they will be safe and effective.
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http://dx.doi.org/10.1055/s-0039-1677901DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6697547PMC
August 2019

Universal screening of newborns for biliary atresia: Cost-effectiveness of alternative strategies.

J Med Screen 2019 Sep 14;26(3):113-119. Epub 2019 Mar 14.

6 Centre for Clinical Epidemiology & Evaluation, Vancouver Coastal Health Research Institute, Vancouver, Canada.

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http://dx.doi.org/10.1177/0969141319832039DOI Listing
September 2019

Relationship Between Proton Pump Inhibitors and Pneumonia May Be an Epiphenomenon.

J Am Geriatr Soc 2018 12 16;66(12):2429-2430. Epub 2018 Oct 16.

Geisinger Holy Spirit, Camp Hill, PA.

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http://dx.doi.org/10.1111/jgs.15598DOI Listing
December 2018

Errors Resulting From Standard Order Sets.

JAMA 2018 08;320(8):838

Geisinger Holy Spirit Hospital, Geisinger Health System, Camp Hill, Pennsylvania.

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http://dx.doi.org/10.1001/jama.2018.7816DOI Listing
August 2018

Best practices for preventing malfunctions in rule-based clinical decision support alerts and reminders: Results of a Delphi study.

Int J Med Inform 2018 10 2;118:78-85. Epub 2018 Aug 2.

School of Biomedical Informatics, University of Texas Health Science Center at Houston, Houston, TX, United States.

Objective: Developing effective and reliable rule-based clinical decision support (CDS) alerts and reminders is challenging. Using a previously developed taxonomy for alert malfunctions, we identified best practices for developing, testing, implementing, and maintaining alerts and avoiding malfunctions.

Materials And Methods: We identified 72 initial practices from the literature, interviews with subject matter experts, and prior research. To refine, enrich, and prioritize the list of practices, we used the Delphi method with two rounds of consensus-building and refinement. We used a larger than normal panel of experts to include a wide representation of CDS subject matter experts from various disciplines.

Results: 28 experts completed Round 1 and 25 completed Round 2. Round 1 narrowed the list to 47 best practices in 7 categories: knowledge management, designing and specifying, building, testing, deployment, monitoring and feedback, and people and governance. Round 2 developed consensus on the importance and feasibility of each best practice.

Discussion: The Delphi panel identified a range of best practices that may help to improve implementation of rule-based CDS and avert malfunctions. Due to limitations on resources and personnel, not everyone can implement all best practices. The most robust processes require investing in a data warehouse. Experts also pointed to the issue of shared responsibility between the healthcare organization and the electronic health record vendor.

Conclusion: These 47 best practices represent an ideal situation. The research identifies the balance between importance and difficulty, highlights the challenges faced by organizations seeking to implement CDS, and describes several opportunities for future research to reduce alert malfunctions.
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http://dx.doi.org/10.1016/j.ijmedinf.2018.08.001DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6128667PMC
October 2018

Benefit-risk of Patients' Online Access to their Medical Records: Consensus Exercise of an International Expert Group.

Yearb Med Inform 2018 Aug 22;27(1):156-162. Epub 2018 Apr 22.

Department of Clinical & Experimental Medicine, University of Surrey, GUILDFORD, Surrey, UK.

Background:  Patients' access to their computerised medical records (CMRs) is a legal right in many countries. However, little is reported about the benefit-risk associated with patients' online access to their CMRs.

Objective:  To conduct a consensus exercise to assess the impact of patients' online access to their CMRs on the quality of care as defined in six domains by the Institute of Medicine (IoM), now the National Academy of Medicine (NAM).

Method:  A five-round Delphi study was conducted. Round One explored experts' (n = 37) viewpoints on providing patients with access to their CMRs. Round Two rated the appropriateness of statements arising from Round One (n = 16). The third round was an online panel discussion of findings (n = 13) with the members of both the International Medical Informatics Association and the European Federation of Medical Informatics Primary Health Care Informatics Working Groups. Two additional rounds, a survey of the revised consensus statements and an online workshop, were carried out to further refine consensus statements.

Results:  Thirty-seven responses from Round One were used as a basis to initially develop 15 statements which were categorised using IoM's domains of care quality. The experts agreed that providing patients online access to their CMRs for bookings, results, and prescriptions increased efficiency and improved the quality of medical records. Experts also anticipated that patients would proactively use their online access to share data with different health care providers, including emergencies. However, experts differed on whether access to limited or summary data was more useful to patients than accessing their complete records. They thought online access would change recording practice, but they were unclear about the benefit-risk of high and onerous levels of security. The 5-round process, finally, produced 16 consensus statements.

Conclusion:  Patients' online access to their CMRs should be part of all CMR systems. It improves the process of health care, but further evidence is required about outcomes. Online access improves efficiency of bookings and other services. However, there is scope to improve many of the processes of care it purports to support, particularly the provision of a more effective interface and the protection of the vulnerable.
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http://dx.doi.org/10.1055/s-0038-1641202DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6115222PMC
August 2018

Prolonged granulocyte colony stimulating factor use in glycogen storage disease type 1b associated with acute myeloid leukemia and with shortened telomere length.

Pediatr Hematol Oncol 2018 Feb 13;35(1):45-51. Epub 2018 Apr 13.

c Department of Pediatrics , University of British Columbia, BC Children's Hospital , Vancouver , BC . Canada.

Glycogen storage disease (GSD) type 1 is a rare autosomal recessive inherited condition. The 1b subtype comprises the minority of cases, with an estimated prevalence of 1 in 500,000 children. Patients with glycogen storage disease type 1b are often treated with granulocyte colony stimulating factor (G-CSF) for prolonged periods to improve symptoms of inflammatory bowel disease (IBD) and in the face of severe neutropenia to decrease risk of infection. Long-term G-CSF treatment may result in an increased risk of myelodysplastic syndrome (MDS) or acute myeloid leukemia (AML) possibly due to increased marrow stress resulting in telomere shortening. To our knowledge, there have been two published cases of AML in GSD type 1b patients following long-term G-CSF exposure. Here, we report two further cases of AML/MDS-related changes in patients GSD type 1b treated with G-CSF. One patient developed AML with complex karyotype after 20 years of G-CSF treatment. The second patient was found to have short telomeres after 10 years of G-CSF exposure, but no evidence of acute leukemia at present. The third patient developed AML/MDS after 25 years of G-CSF use, with short telomeres prior to bone marrow transplant. Together these cases suggest that GSD type 1b patients with prolonged G-CSF exposure may be at an increased risk of MDS/AML states associated with G-CSF-induced shortened telomeres. We recommend that any GSD1b patients with prolonged G-CSF should have routine telomere assessments with monitoring for MDS if telomere shortening is observed, and with particular attention warranted if there is unexplained loss of G-CSF responsiveness.
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http://dx.doi.org/10.1080/08880018.2018.1440675DOI Listing
February 2018

Province-wide Biliary Atresia Home Screening Program in British Columbia: Evaluation of First 2 Years.

J Pediatr Gastroenterol Nutr 2018 Jun;66(6):845-849

Department of Pediatrics, BC Children's Hospital.

Background And Objectives: Biliary atresia (BA), a rare newborn liver disease, is the leading cause of liver-related death in children. Early disease recognition and timely surgical Kasai hepatoportoenterostomy (KP) offers long-term survival without liver transplant. Universal BA screening in Taiwan using infant stool color cards (ISCCs) has proven effectiveness. We report our experience with infant stool color card (ISCC) BA screening in a province-wide program in British Columbia (BC). The objective of this study is to assess program performance and cost from launch April 1, 2014 to March 31, 2016.

Methods: ISCCs distributed to families upon maternity ward discharge. Parents were instructed to monitor their infant's stool color for 1 month and contacted the screening center with concerns. The number of live births, ISCC distribution, BA cases, and costs were recorded. Cases with Program screen success had both acholic stool recognition (ISCC screen success) and timely referral for BA.

Results: All 126 maternity units received ISCCs. Of 87,583 live births there were 6 BA cases. Of the 5 cases with ISCC Screen Success 3 had Program Screen Success. The median KP age in the program screen success and failure groups was 49 (42-52) and 116 (49-184) days, respectively. Program sensitivity was 50%, specificity 99%, positive predictive value 4%, and negative predictive value 99%. A random sample of 1054 charts at BC Children's Hospital found an ISCC distribution rate of 94%. After a phase-in period, the annual program cost was $30,033.82, and the ISCC cost per birth was $0.68.

Conclusions: The screening program has high specificity and distribution with low cost. Successful program case identification had earlier age at KP. Program modifications aim to improve sensitivity. Longer-term studies will determine program impact on health outcomes.
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http://dx.doi.org/10.1097/MPG.0000000000001950DOI Listing
June 2018

Methods for Detecting Malfunctions in Clinical Decision Support Systems.

Stud Health Technol Inform 2017 ;245:1385

Brigham and Women's Hospital, Boston, MA.

Clinical decision support systems, when used effectively, can improve the quality of care. However, such systems can malfunction, and these malfunctions can be difficult to detect. In this poster, we describe four methods of detecting and resolving issues with clinical decision support: 1) statistical anomaly detection, 2) visual analytics and dashboards, 3) user feedback analysis, 4) taxonomization of failure modes/effects.
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June 2018

Clinical decision support alert malfunctions: analysis and empirically derived taxonomy.

J Am Med Inform Assoc 2018 05;25(5):496-506

Department of Biomedical Informatics, University of Texas Health Science Center at Houston, TX, USA.

Objective: To develop an empirically derived taxonomy of clinical decision support (CDS) alert malfunctions.

Materials And Methods: We identified CDS alert malfunctions using a mix of qualitative and quantitative methods: (1) site visits with interviews of chief medical informatics officers, CDS developers, clinical leaders, and CDS end users; (2) surveys of chief medical informatics officers; (3) analysis of CDS firing rates; and (4) analysis of CDS overrides. We used a multi-round, manual, iterative card sort to develop a multi-axial, empirically derived taxonomy of CDS malfunctions.

Results: We analyzed 68 CDS alert malfunction cases from 14 sites across the United States with diverse electronic health record systems. Four primary axes emerged: the cause of the malfunction, its mode of discovery, when it began, and how it affected rule firing. Build errors, conceptualization errors, and the introduction of new concepts or terms were the most frequent causes. User reports were the predominant mode of discovery. Many malfunctions within our database caused rules to fire for patients for whom they should not have (false positives), but the reverse (false negatives) was also common.

Discussion: Across organizations and electronic health record systems, similar malfunction patterns recurred. Challenges included updates to code sets and values, software issues at the time of system upgrades, difficulties with migration of CDS content between computing environments, and the challenge of correctly conceptualizing and building CDS.

Conclusion: CDS alert malfunctions are frequent. The empirically derived taxonomy formalizes the common recurring issues that cause these malfunctions, helping CDS developers anticipate and prevent CDS malfunctions before they occur or detect and resolve them expediently.
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http://dx.doi.org/10.1093/jamia/ocx106DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6019061PMC
May 2018

Clinical Characteristics and Complications of Pediatric Liver Biopsy: A Single Centre Experience.

Ann Hepatol 2017 Sep-Oct;16(5):797-801

Hepatology and Nutrition, BC Children's Hospital Division of Pediatric Gastroenterology.

Introduction: Percutaneous liver biopsy (LB) is the gold standard method for evaluation and management of patients with liver disease. The purpose of this study was to characterize pediatric patients undergoing LB at British Columbia Children's Hospital, and to determine the rate and timing of complications following the procedure.

Material And Methods: The medical records of all pediatric patients who underwent LB during a six-year retrospective study were reviewed to collect demographic and procedure-related data.

Results: 223 LBs were performed, and 179 of these biopsies were percutaneous or transjugular. Elevated liver enzymes and cholestasis together accounted for almost 70% of the indications for LB, and the histological analysis of liver tissue yielded a specific diagnosis in 89 % of the cases. There were no deaths and no major complications related to LB. The most frequent minor complication was pain (59% of LBs) and the other complications were bleeding-related and classified as minor. The vast majority of complications (88%) were recognized within 8 h of the LB.

Conclusions: LB is a valuable and safe procedure in pediatric patients with a low rate of complications. Pediatric patients can be discharged home safely should no complications occur within the first 8-12 h after the procedure.
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http://dx.doi.org/10.5604/01.3001.0010.2809DOI Listing
May 2018

Antenatal Treatment with Intravenous Immunoglobulin to Prevent Gestational Alloimmune Liver Disease: Comparative Effectiveness of 14-Week versus 18-Week Initiation.

Fetal Diagn Ther 2018 5;43(3):218-225. Epub 2017 Aug 5.

Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL , USA.

Background: Antenatal therapy with high-dose intravenous immunoglobulin (IVIG) may prevent gestational alloimmune liver disease (GALD).

Objective: The objective of this study was to determine the effectiveness of this approach in a large cohort of women at risk for poor pregnancy outcome due to GALD.

Methods: Women with a history of affected offspring were provided antenatal IVIG treatment and data were acquired prospectively from 1997 to 2015. The outcomes of treated pregnancies were compared to those of untreated pregnancies, and the effectiveness of starting at 14 weeks was compared to that of starting at 18 weeks.

Results: A total of 188 treated pregnancies in 151 women were analyzed. Only 30% (n = 105) of untreated gestations resulted in healthy offspring as compared to 94% (n = 177) of treated pregnancies (p < 0.0001). Treated gestations of both the 14-week (n = 108) and the 18-week (n = 80) start cohort showed a decreased rate of fetal loss relative to untreated gestations (p < 0.0001). Equivalent outcomes were recorded in the 18-week versus the 14-week start cohort (p > 0.05). Few adverse events or complications of antenatal therapy were recorded.

Conclusion: Antenatal therapy with high-dose IVIG initiated at either 18 or 14 gestational weeks effectively prevents poor outcome of pregnancies at risk for GALD.
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http://dx.doi.org/10.1159/000477616DOI Listing
September 2018

Screening for biliary atresia: it's in the cards.

Can Fam Physician 2017 Jun;63(6):424-425

Research Coordinator in the Department of Pediatrics and the Division of GI, Hepatology and Nutrition at BC Children's Hospital.

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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5471075PMC
June 2017

Orders on file but no labs drawn: investigation of machine and human errors caused by an interface idiosyncrasy.

J Am Med Inform Assoc 2017 Sep;24(5):958-963

Brigham & Women's Hospital, Boston, MA, USA; Harvard Medical School, Boston, MA, USA; Partners HealthCare, Boston, MA, USA.

In this report, we describe 2 instances in which expert use of an electronic health record (EHR) system interfaced to an external clinical laboratory information system led to unintended consequences wherein 2 patients failed to have laboratory tests drawn in a timely manner. In both events, user actions combined with the lack of an acknowledgment message describing the order cancellation from the external clinical system were the root causes. In 1 case, rapid, near-simultaneous order entry was the culprit; in the second, astute order management by a clinician, unaware of the lack of proper 2-way interface messaging from the external clinical system, led to the confusion. Although testing had shown that the laboratory system would cancel duplicate laboratory orders, it was thought that duplicate alerting in the new order entry system would prevent such events.
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http://dx.doi.org/10.1093/jamia/ocw188DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6080845PMC
September 2017