ASH Research Collaborative: a real-world data infrastructure to support real-world evidence development and learning healthcare systems in hematology.

The ASH Research Collaborative is a nonprofit organization established through the American Society of Hematology's commitment to patients with hematologic conditions and the science that informs clinical care and future therapies. The ASH Research Collaborative houses 2 major initiatives: (1) the Data Hub and (2) the Clinical Trials Network (CTN). The Data Hub is a program for hematologic diseases in which networks of clinical care delivery sites are developed in specific disease areas, with individual patient data contributed through electronic health record (EHR) integration, direct data entry through electronic data capture, and external data sources. Disease-specific data models are constructed so that data can be assembled into analytic datasets and used to enhance clinical care through dashboards and other mechanisms. Initial models have been built in multiple myeloma (MM) and sickle cell disease (SCD) using the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) and Fast Healthcare Interoperability Resources (FHIR) standards. The Data Hub also provides a framework for development of disease-specific learning communities (LC) and testing of health care delivery strategies. The ASH Research Collaborative SCD CTN is a clinical trials accelerator that creates efficiencies in the execution of multicenter clinical trials and has been initially developed for SCD. Both components are operational, with the Data Hub actively aggregating source data and the SCD CTN reviewing study candidates. This manuscript describes processes involved in developing core features of the ASH Research Collaborative to inform the stakeholder community in preparation for expansion to additional disease areas.

Methodology for adaptation of the ASH Guidelines for Management of Venous Thromboembolism for the Latin American context.

BACKGROUND: From 2017 to 2020, the American Society of Hematology (ASH) collaborated with 12 hematology societies in Latin America to adapt the ASH guidelines on venous thromboembolism (VTE). OBJECTIVE: To describe the methods used to adapt the ASH guidelines on venous thromboembolism. METHODS: Each society nominated 1 individual to serve on the guideline panel. The work of the panel was facilitated by the 2 methodologists. The methods team selected 4 of the original VTE guidelines for a first round. To select the most relevant questions, a 2-step prioritization process was conducted through an on-line survey and then through in-person discussion. During an in-person meeting in Rio de Janeiro, Brazil, from 23 April through 26 April 2018, the panel developed recommendations using the ADOLOPMENT approach. Evidence about health effects from the original guidelines was reused, but important data about resource use, accessibility, feasibility, and impact in health equity were added. RESULTS: In the guideline accompanying this paper, Latin American panelists selected 17 questions from an original pool of 49. Of the 17 questions addressed, substantial changes were introduced for 5 recommendations, and remarks were added or modified for 12 recommendations. CONCLUSIONS: By using the evidence from an international guideline, a significant amount of work and time were saved; by adding regional evidence, the final recommendations were tailored to the Latin American context. This experience offers an alternative to develop guidelines relevant to local contexts through a global collaboration.

Outcomes of patients with hematologic malignancies and COVID-19: a report from the ASH Research Collaborative Data Hub.

Coronavirus disease 2019 (COVID-19) is an illness resulting from severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) that emerged in late 2019. Patients with cancer, and especially those with hematologic malignancies, may be at especially high risk of adverse outcomes, including mortality resulting from COVID-19 infection. The ASH Research Collaborative COVID-19 Registry for Hematology was developed to study features and outcomes of COVID-19 infection in patients with underlying blood disorders, such as hematologic malignancies. At the time of this report, data from 250 patients with blood cancers from 74 sites around the world had been entered into the registry. The most commonly represented malignancies were acute leukemia (33%), non-Hodgkin lymphoma (27%), and myeloma or amyloidosis (16%). Patients presented with a myriad of symptoms, most frequently fever (73%), cough (67%), dyspnea (50%), and fatigue (40%). Use of COVID-19-directed therapies, such as hydroxychloroquine (n = 76) or azithromycin (n = 59), was common. Overall mortality was 28%. Patients with a physician-estimated prognosis from the underlying hematologic malignancy of <12 months at the time of COVID-19 diagnosis and those with relapsed/refractory disease experienced a higher proportion of moderate/severe COVID-19 disease and death. In some instances, death occurred after a decision was made to forgo intensive care unit admission in favor of a palliative approach. Taken together, these data support the emerging consensus that patients with hematologic malignancies experience significant morbidity and mortality resulting from COVID-19 infection. Batch submissions from sites with high incidence of COVID-19 infection are planned to support future analyses.

Systems-based hematology: highlighting successes and next steps.

Systems-based hematology is dedicated to improving care delivery for patients with blood disorders. First defined by the American Society of Hematology in 2015, the idea of a systems-based hematologist arose from evolving pressures in the health care system and increasing recognition of opportunities to optimize the quality and cost effectiveness of hematologic care. In this review, we begin with a proposed framework to formalize the discussion of the range of initiatives within systems-based hematology. Classification by 2 criteria, project scope and method of intervention, facilitates comparison between initiatives and supports dialogue for future efforts. Next, we present published examples of successful systems-based initiatives in the field of hematology, including efforts to improve stewardship in the diagnosis and management of complex hematologic disorders (eg, heparin-induced thrombocytopenia and thrombophilias), the development of programs to promote appropriate use of hematologic therapies (eg, blood products, inferior vena cava filters, and anticoagulation), changes in care delivery infrastructure to improve access to hematologic expertise (eg, electronic consultation and disorder-specific care pathways), and others. The range of projects illustrates the broad potential for interventions and highlights different metrics used to quantify improvements in care delivery. We conclude with a discussion about future directions for the field of systems-based hematology, including extension to malignant disorders and the need to define, expand, and support career pathways.

A user guide to the American Society of Hematology clinical practice guidelines.

Since November 2018, Blood Advances has published American Society of Hematology (ASH) clinical practice guidelines on venous thromboembolism, immune thrombocytopenia, and sickle cell disease. More ASH guidelines on these and other topics are forthcoming. These guidelines have been developed using consistent processes, methods, terminology, and presentation formats. In this article, we describe how patients, clinicians, policymakers, researchers, and others may use ASH guidelines and the many related derivates by describing how to interpret information and how to apply it to clinical decision-making. Also, by exploring how these documents are developed, we aim to clarify their limitations and possible inappropriate usage.

Bridging the Gap Among Clinical Practice Guidelines for Pain Management in Cancer and Sickle Cell Disease.

Opioids are a critical component of pain relief strategies for the management of patients with cancer and sickle cell disease. The escalation of opioid addiction and overdose in the United States has led to increased scrutiny of opioid prescribing practices. Multiple reports have revealed that regulatory and coverage policies, intended to curb inappropriate opioid use, have created significant barriers for many patients. The Centers for Disease Control and Prevention, National Comprehensive Cancer Network, and ASCO each publish clinical practice guidelines for the management of chronic pain. A recent JAMA Oncology article highlighted perceived variability in recommendations among these guidelines. In response, leadership from guideline organizations, government representatives, and authors of the original article met to discuss challenges and solutions. The meeting featured remarks by the Commissioner of Food and Drugs, presentations on each clinical practice guideline, an overview of the pain management needs of patients with sickle cell disease, an overview of perceived differences among guidelines, and a discussion of differences and commonalities among the guidelines. The meeting revealed that although each guideline varies in the intended patient population, target audience, and methodology, there is no disagreement among recommendations when applied to the appropriate patient and clinical situation. It was determined that clarification and education are needed regarding the intent, patient population, and scope of each clinical practice guideline, rather than harmonization of guideline recommendations. Clinical practice guidelines can serve as a resource for policymakers and payers to inform policy and coverage determinations.

Bridging the Gap Among Clinical Practice Guidelines for Pain Management in Cancer and Sickle Cell Disease.

Opioids are a critical component of pain relief strategies for the management of patients with cancer and sickle cell disease. The escalation of opioid addiction and overdose in the United States has led to increased scrutiny of opioid prescribing practices. Multiple reports have revealed that regulatory and coverage policies, intended to curb inappropriate opioid use, have created significant barriers for many patients. The Centers for Disease Control and Prevention, National Comprehensive Cancer Network, and American Society of Clinical Oncology each publish clinical practice guidelines for the management of chronic pain. A recent JAMA Oncology article highlighted perceived variability in recommendations among these guidelines. In response, leadership from guideline organizations, government representatives, and authors of the original article met to discuss challenges and solutions. The meeting featured remarks by the Commissioner of Food and Drugs, presentations on each clinical practice guideline, an overview of the pain management needs of patients with sickle cell disease, an overview of perceived differences among guidelines, and a discussion of differences and commonalities among the guidelines. The meeting revealed that although each guideline varies in the intended patient population, target audience, and methodology, there is no disagreement among recommendations when applied to the appropriate patient and clinical situation. It was determined that clarification and education are needed regarding the intent, patient population, and scope of each clinical practice guideline, rather than harmonization of guideline recommendations. Clinical practice guidelines can serve as a resource for policymakers and payers to inform policy and coverage determinations.

Psychiatrists' Comfort Using Computers and Other Electronic Devices in Clinical Practice.

This report highlights findings from the Study of Psychiatrists' Use of Informational Resources in Clinical Practice, a cross-sectional Web- and paper-based survey that examined psychiatrists' comfort using computers and other electronic devices in clinical practice. One-thousand psychiatrists were randomly selected from the American Medical Association Physician Masterfile and asked to complete the survey between May and August, 2012. A total of 152 eligible psychiatrists completed the questionnaire (response rate 22.2 %). The majority of psychiatrists reported comfort using computers for educational and personal purposes. However, 26 % of psychiatrists reported not using or not being comfortable using computers for clinical functions. Psychiatrists under age 50 were more likely to report comfort using computers for all purposes than their older counterparts. Clinical tasks for which computers were reportedly used comfortably, specifically by psychiatrists younger than 50, included documenting clinical encounters, prescribing, ordering laboratory tests, accessing read-only patient information (e.g., test results), conducting internet searches for general clinical information, accessing online patient educational materials, and communicating with patients or other clinicians. Psychiatrists generally reported comfort using computers for personal and educational purposes. However, use of computers in clinical care was less common, particularly among psychiatrists 50 and older. Information and educational resources need to be available in a variety of accessible, user-friendly, computer and non-computer-based formats, to support use across all ages. Moreover, ongoing training and technical assistance with use of electronic and mobile device technologies in clinical practice is needed. Research on barriers to clinical use of computers is warranted.

Who's your expert? Use of an expert opinion survey to inform development of American Psychiatric Association practice guidelines.

OBJECTIVE: For many clinical questions in psychiatry, high-quality evidence is lacking. Credible practice guidelines for such questions depend on transparent, reproducible, and valid methods for assessing expert opinion. The objective of this study was to develop and demonstrate the feasibility of a method for assessing expert opinion to aid in the development of practice guidelines by the American Psychiatric Association (APA). METHODS: A "snowball" process initially soliciting nominees from three sets of professional leaders was used to identify experts on a guideline topic (psychiatric evaluation). In a Web-based survey, the experts were asked to rate their level of agreement that specific assessments improve specific outcomes when they are included in an initial psychiatric evaluation. The experts were also asked about their own practice patterns with respect to the doing of the assessments. The main outcome measures are the following: number of nominated experts, number of experts who participated in the survey, and number and nature of quantitative and qualitative responses. RESULTS: The snowball process identified 1,738 experts, 784 (45 %) of whom participated in the opinion survey. Participants generally, but not always, agreed or strongly agreed that the assessments asked about would improve specified outcomes. Participants wrote 716 comments explaining why they might not typically include some assessments in an initial evaluation and 1,590 comments concerning other aspects of the topics under consideration. CONCLUSIONS: The snowball process based on initial solicitation of Psychiatry's leaders produced a large expert panel. The Web-based survey systematically assessed the opinions of these experts on the utility of specific psychiatric assessments, providing useful information to substantiate opinion-based practice guidelines on how to conduct a psychiatric evaluation. The considerable engagement of respondents shows promise for using this methodology in developing future APA practice guidelines.

Innovations in the utilization of health information technology in psychiatric services.

There is ever-increasing activity in applying information technology to various areas of healthcare, including mental health. Examples of innovations include applications in screening, treatment, clinical decision support, communication and coordination, telemedicine, Internet-based education and services, public health research, training and education, and bioinformatics. Issues and challenges include protection of privacy, managing narrative free text, assessing the reliability of information found online, and mitigating impact on clinical workflow. While many of the innovations described will not be fully realized until national information systems reach a larger scale, many are having a positive impact on mental healthcare today.

Assisting consumer health information retrieval with query recommendations.

OBJECTIVE: Health information retrieval (HIR) on the Internet has become an important practice for millions of people, many of whom have problems forming effective queries. We have developed and evaluated a tool to assist people in health-related query formation. DESIGN: We developed the Health Information Query Assistant (HIQuA) system. The system suggests alternative/additional query terms related to the user's initial query that can be used as building blocks to construct a better, more specific query. The recommended terms are selected according to their semantic distance from the original query, which is calculated on the basis of concept co-occurrences in medical literature and log data as well as semantic relations in medical vocabularies. MEASUREMENTS: An evaluation of the HIQuA system was conducted and a total of 213 subjects participated in the study. The subjects were randomized into 2 groups. One group was given query recommendations and the other was not. Each subject performed HIR for both a predefined and a self-defined task. RESULTS: The study showed that providing HIQuA recommendations resulted in statistically significantly higher rates of successful queries (odds ratio = 1.66, 95% confidence interval = 1.16-2.38), although no statistically significant impact on user satisfaction or the users' ability to accomplish the predefined retrieval task was found. CONCLUSION: Providing semantic-distance-based query recommendations can help consumers with query formation during HIR.

Reformulation of consumer health queries with professional terminology: a pilot study.

BACKGROUND: The Internet is becoming an increasingly important resource for health-information seekers. However, consumers often do not use effective search strategies. Query reformulation is one potential intervention to improve the effectiveness of consumer searches. OBJECTIVE: We endeavored to answer the research question: "Does reformulating original consumer queries with preferred terminology from the Unified Medical Language System (UMLS) Metathesaurus lead to better search returns?" METHODS: Consumer-generated queries with known goals (n=16) that could be mapped to UMLS Metathesaurus terminology were used as test samples. Reformulated queries were generated by replacing user terms with Metathesaurus-preferred synonyms (n=18). Searches (n=36) were performed using both a consumer information site and a general search engine. Top 30 precision was used as a performance indicator to compare the performance of the original and reformulated queries. RESULTS: Forty-two percent of the searches utilizing reformulated queries yielded better search returns than their associated original queries, 19% yielded worse results, and the results for the remaining 39% did not change. We identified ambiguous lay terms, expansion of acronyms, and arcane professional terms as causes for changes in performance. CONCLUSIONS: We noted a trend towards increased precision when providing substitutions for lay terms, abbreviations, and acronyms. We have found qualitative evidence that reformulating queries with professional terminology may be a promising strategy to improve consumer health-information searches, although we caution that automated reformulation could in fact worsen search performance when the terminology is ill-fitted or arcane.

Positive attitudes and failed queries: an exploration of the conundrums of consumer health information retrieval.

Several studies have found that consumers report a high level of satisfaction with the Internet as a health information resource. Belied by this positive attitude, however, are other studies reporting that consumers were often unsuccessful in searching for health information. In this paper, we present an interview and observation study in which we asked health consumers to search for health information on the Internet after first stating their search goals. Upon the conclusion of the session they were asked to evaluate their searches. We found that many consumers were unable to find satisfactory information when performing a specific query, while in general the group viewed health information retrieval (HIR) on the Internet in a positive light. We analyzed the observed search sessions to determine what factors accounted for the failure of specific searches and positive attitudes, and also discussed potential informatics solutions.