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Sharing Clinical Trial Data: Challenges And A Way Forward

Responsible sharing of clinical trial data is widely recognized as serving the public interest. Data sharing helps maximize the contributions to scientific knowledge made by clinical trial participants, benefiting patients today and in the future. Clinical trial data sharing can enable reproducibility of research findings, analyses for other areas of study, and exploratory work to generate new research hypotheses. While progress has been made in the endeavor of improving clinical trial data sharing, challenges still remain. On November 18 and 19, 2019, the National Academies of Sciences, Engineering, and Medicine hosted a public workshop, in Washington, DC, titled “Sharing Clinical Trial Data: Challenges and a Way Forward.” The workshop followed the release of the 2015 Institute of Medicine (IOM) consensus study, Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risks, and was designed to examine the current state of clinical trial data sharing and reuse since the report release. The workshop considered ways in which policy, technology, incentives, and governance could be leveraged to overcome remaining barriers and further facilitate data sharing. These proceedings summarize presentations and points made at the workshop in 2019 and can be obtained here.

The 2015 consensus study can be obtained here.

National Inpatient Hospital Costs: The Most Expensive Conditions By Payer, 2017

A Statistical Brief from the Agency for Healthcare Research and Quality (AHRQ) presents data from the Healthcare Cost and Utilization Project (HCUP) on costs of hospital inpatient stays in the United States using the 2017 National Inpatient Sample (NIS). It describes the distribution of costs by primary expected payer and illustrates the conditions accounting for the largest percentage of each payer's hospital costs. Hospital charges were converted to costs using HCUP Cost-to-Charge Ratios. The expected payers examined are Medicare, Medicaid, private insurance, and self-pay/no charge. Because of the large sample size of the NIS data, small differences can be statistically significant. Thus, only differences greater than or equal to 10% are noted in the text. Hospital costs in this Statistical Brief represent the hospital's costs to produce the services, not the amount paid for services by payers, and they do not include separately billed physician fees associated with the hospitalization. Healthcare spending in the United States increased 4.2% between 2016 and 2017 to $3.5 trillion, or $10,739 per person, and accounted for 17.9% of the Gross Domestic Product. Constituting nearly one-third of all healthcare expenditures, hospital spending rose 4.7% to $1.1 trillion during the same time period. Although this growth represented deceleration compared with the 5.8% increase between 2014 and 2015, the consistent year-to-year rise in hospital-related expenses remains a central concern among policymakers. In 2016, there were over 35 million hospital stays, equating to 104.2 stays per 100,000 population. The average cost per hospital stay was $11,700, making hospitalization one of the most expensive types of healthcare utilization. Higher costs are documented for stays among patients with an expected payer of Medicare compared with stays with other expected payers ($13,600 for Medicare vs. $9,300-$12,600 for other payers). The Brief can be obtained here.

Racial and Ethnic Disparities Among COVID-19 Cases in Workplace Outbreaks

Data from the Morbidity and Mortality Weekly Report of August 21, 2020 show that during March 6–June 5, 2020, workplace outbreaks occurred in 15 Utah industry sectors; 58% of workplace outbreak-associated COVID-19 cases were in three sectors: Manufacturing, Wholesale Trade, and Construction. Despite representing 24% of Utah workers in all affected sectors, Hispanic and nonwhite workers accounted for 73% of workplace outbreak-associated COVID-19 cases. The report can be obtained here.

More July-August 2020 TRENDS Articles

ANHEDONIA AND MORE PLEASURABLE TIMES

Indicates the kinds of changes that have occurred since COVID-19 made its appearance, including the flood of scientific papers about this disease that have been produced since January of this year. Read More

PRESIDENT’S CORNER

ASAHP President Phyllis King presents some reflections on impacts that the coronavirus has had on the health workforce. Read More

LEGISLATION VS. EXECUTIVE ORDERS

contains information about steps taken by the Trump Administration in response to Congressional deadlock in reaching agreement on a new coronavirus relief package. Read More

HEALTH REFORM DEVELOPMENTS

Points out how disparities can result from housing policies outside the health domain that entail historic redlining and its effects on birth outcomes. Read More

DEVELOPMENTS IN HIGHER EDUCATION

Describes financial aspects related to closing schools because of COVID-19, mental health services for students, and a new grant program aimed at enabling higher education institutions to emerge from the current pandemic better able to expand educational opportunities for students. Read More

QUICK STAT (SHORT, TIMELY, AND TOPICAL)

  • The COVID-19 Pandemic And Exacerbation Of Intimate Partner Violence

  • Mental Health, Substance Use, And Suicidal Ideation During The Coronavirus Pandemic 

  • Digital Biomarker Of Diabetes From Smartphone-Based Vascular Signals 

  • Using Smartphone Accelerometers To Sense Gait Impairments Due To Alcohol Intoxication Read More

AVAILABLE RESOURCES ACCESSIBLE ELECTRONICALLY

  • Sharing Clinical Trial Data: Challenges And A Way Forward

  • National Inpatient Hospital Costs: The Most Expensive Conditions By Payer, 2017

  • Racial And Ethnic Disparities Among COVID-19 Cases In Workplace Outbreaks Read More

RACIAL DISPARITIES AND NOMENCLATURE IN NEUROSCIENCE

Early life adversity, exposure to toxins throughout life, and racial discrimination are factors contributing to psychiatric disorders, while differences in how nomenclature is used by clinicians and family caregivers may compromise the quality of treatment for Alzheimer’s patients. Read More

AUTOPSIES, HEALTH DISPARITIES, AND INFORMED CONSENT

Differences in autopsy rates between blacks and whites may reflect health disparities while the incorporation of genetic testing in the performance of autopsies raises important questions pertaining to informed consent by relatives of decedents. Read More