DataDerm™: The power of data
Academy members discuss how data from dermatology’s largest clinical data registry is being used to improve patient care and support the specialty.
By Allison Evans, Assistant Managing Editor, October 1, 2023
Fact: Physicians are busy. Dermatologists have jam-packed patient schedules, an increase in administrative tasks, and ever-changing reporting requirements. The Academy has developed a tool that not only streamlines burdensome reporting requirements, but most importantly, helps guide dermatologists in their quest to provide the highest-quality patient care. This tool is DataDerm™.
Increasingly, we’re hearing about networks that are ranking physicians based on irrelevant quality metrics or bare-bones cost metrics that aren’t risk adjusted, said past Academy President Henry W. Lim, MD, FAAD, in a 2018 DermWorld From the President column. “Physicians who are deemed too expensive are then removed from networks or are moved to a higher tier where it costs more for the patient to be seen. However, DataDerm can help combat this issue as the platform allows dermatologists to showcase the value of the care they provide.”
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Key takeaways from this article:
DataDerm is the largest clinical registry of dermatologic patients in the world and is a valuable resource for quality improvement, research, and advocacy.
DataDerm is now collaborating with OM1, a data analytics company that uses artificial intelligence and predictive medicine to enhance analyses.
DataDerm has shown that what were thought to be historically rare diseases are actually not so rare.
Academy members can request access to DataDerm data to support research and quality improvement initiatives by filling out a web form.
The AAD is launching an innovative breakthrough project to develop educational resources to improve the evaluation, diagnosis, and treatment of patients suffering from generalized pustular psoriasis.
The American Board of Dermatology has determined that participation in AAD’s DataDerm will satisfy Continuing Certification requirements.
DataDerm streamlines MIPS reporting and allows users to avoid penalties and earn incentives through the MIPS Reporting Module.
What is DataDerm?
Introduced in 2016, DataDerm is the specialty’s largest clinical data registry and a free member benefit, said Caryn Etkin, PhD, MPH, the Academy’s director of clinical registries and quality science. “The registry connects data on millions of patients from thousands of dermatologists nationwide, eases the pain of reporting for programs, such as MIPS, and allows physicians to demonstrate the quality of care they provide to payers, policymakers, and the medical community. The registry also offers participating physicians a dashboard of their own quality measures benchmarked against national averages.”
DataDerm has more than 14 million patients and more than 50 million patient visits in the registry. It integrates with most electronic health record systems (more than 30 different EHRs have been integrated, including Epic and Modernizing Medicine) and it’s a one-stop solution for the Merit-based Incentive Payment System (MIPS) reporting, Etkin noted.
DataDermTM is dermatology’s largest clinical data registry. It helps you improve quality of care, optimize practice efficiency, facilitate health services research, and demonstrate value to payers and insurers. Learn more about DataDerm.
DataDerm is now collaborating with OM1, a data analytics company that uses artificial intelligence and predictive medicine to enhance analyses. “They have access to numerous registries and datasets, allowing advanced analytics,” Etkin said. “In alignment with the Academy’s mission, we are working with OM1 to enhance our analytic capabilities so that the data from millions of patient encounters within DataDerm can be applied for the greatest patient benefit.” The collaboration will facilitate an acceleration of highly reliable, complex data analyses for members, AADA advocacy efforts, and researchers, to improve dermatologic care, she added.
“With access to multiple registries, OM1 can use de-identified DataDerm data to answer complex questions about disease patterns and co-morbidities of skin disease. These analytics allow us to see a more comprehensive picture of dermatologic disease across time and the health care system,” said Marta Van Beek, MD, MPH, FAAD, chair of the DataDerm Oversight Committee.
AAD launches project to improve outcomes for patients with generalized pustular psoriasis
The AAD, with critical support from Boehringer Ingelheim, and powered by OM1’s data aggregation system and its PhenOM™ artificial intelligence (AI) platform, is launching an innovative breakthrough project to develop educational resources to improve the evaluation, diagnosis, and treatment of patients suffering from generalized pustular psoriasis (GPP).
The AAD’s new Generalized Pustular Psoriasis Education Initiative aims to transform the care of these patients by leveraging the power of data in DataDerm. The project will connect DataDerm’s 50 million deidentified patient encounters with OM1’s AI-based Patient Finder™ tool to improve understanding of GPP patients’ journey, treatment patterns, disease progression, and outcomes. The insights gathered will help inform the development of a range of breakthrough educational resources and tools for dermatologists, referring physicians, and patients aimed at improving the quality of life for GPP sufferers, many of whom currently experience delayed diagnosis and care.
“The American Academy of Dermatology is committed to excellence in dermatology and finding innovative approaches to improve patient care,” said AAD President Terrence A. Cronin Jr., MD., FAAD, in a news release about the initiative. “Though rare, GPP can cause patients incredible pain and suffering. While maintaining our focus on patient privacy, this project will break new ground and provide us with resources that will have a significant impact on these patients’ lives.”
Findings from the first phase of the project will be shared at the American Academy of Dermatology’s 2024 Annual Meeting, March 8-12 in San Diego.
“OM1 has a tool called Patient Finder™ that analyzes millions of data points to help distinguish and describe patients with a target condition. This tool can be used to find patients who may be more likely to have a particular undiagnosed disease.” (See sidebar on the AAD’s new GPP project.)
OM1 also has the capability of capturing data from clinical notes. “They can take the notes and use natural language processing to develop greater detailed analyses on patients,” Etkin said. For instance, they have used the notes to infer things like Hurley score for hidradenitis suppurativa. Dermatologists can also look at reasons why patients are discontinuing biologic therapies. “So far, the data have shown that more than 50% of patients discontinue biologics because they are unable to tolerate the treatment. This type of data would be nearly impossible to gather and analyze if not for incorporating OM1’s ability to use advanced analytics and natural language processing.”
“Most dermatologic disease severity cannot be categorized by a lab value or a number. It is the description of the disease by the dermatologist that documents the severity, or whether the condition is improved or flaring on therapy. With the OM1 collaboration, we can use the narrative from the clinic notes to categorize diseases as mild, moderate, or severe,” Dr. Van Beek added.
AAD member dermatologists in the United States can get started with DataDerm right now. Here's how to enroll.
The power of data
“For the first time since DataDerm’s inception, we can see how patients are treated all over the United States — from academic practice to community-based practices as well,” said Dr. Van Beek. “Patients in the registry include patients who have public and private insurance. This is the first time that we can compare patients with different types of insurances and see how prior authorizations or step-therapy or other delays in care can adversely affect the patient experience.”
“The data allows us to see that ‘rare diseases’ may not be so rare,” Dr. Van Beek said. “We have nearly 2,100 pustular psoriasis patients, over 43,000 alopecia areata patients, over 27,000 hidradenitis suppurativa patients, and thousands of autoimmune blistering patients in the registry. These numbers will allow us to learn more about the natural history of these diseases in addition to common comorbidities and responses to treatments.”
“These data have allowed us to advocate with payers and legislatures about the fact that dermatologists are seeing patients with severe disease and that the medications they’re prescribing are extremely important for timely treatment for patients,” Dr. Van Beek noted.
Robert Dellavalle, MD, PhD, MSPH, FAAD, and his colleagues have used data from the registry to investigate multiple research questions. One study sought to characterize the use of oral antibiotics for the treatment of acne from age 10 through 45 from 2011 to 2019 at the University of Colorado Medical Campus. They found that minocycline was the most frequently prescribed antibiotic for the treatment of acne. Male patients were also 1.67 times more likely to have received an antibiotic prescription and over twice as likely to have received an isotretinoin prescription than female patients.
Another study sought to characterize prescribing patterns of dupilumab for atopic dermatitis in adults at the same Colorado health system. “We found a population AD prevalence of 5.6%. In our cohort, Black patients were more than twice as likely to have received dupilumab than were white patients. Patients with a diagnosis of atopic neurodermatitis were approximately twice as likely to have received dupilumab than those with other diagnostic variants of AD,” Dr. Dellavalle said. The results demonstrate that both patient racial characteristics and specific AD diagnoses were associated with variations in dupilumab prescription patterns, he added.
Dr. Dellavalle is currently working on a research project that explores prescribing patterns of JAK inhibitors for patients with vitiligo. There are also other research projects in progress from a variety of dermatologists using DataDerm data on topics including E/M utilization over time, Mohs surgery in skin of color, cardiovascular comorbidities of rosacea, congenital vascular lesions, and more.
“Our unparalleled network is rich with longitudinal clinical data ready for addressing dermatology’s most urgent questions,” Dr. Van Beek said.
Access DataDerm data
DataDerm’s real-world data is available to Academy members to support research and quality improvement initiatives. Access the data request form.
DataDerm’s real-world data is available to Academy members to support research and quality improvement initiatives. Information from the database provides insight into the background and treatment course for more than 14 million dermatology patients. At DataDerm’s inception, the Academy was focused on collecting the data, but efforts have now shifted to being able to share that data, said Arik Aninos, MS, the Academy’s senior data analyst for DataDerm. “Over the last few years, we have developed our ability to process research requests from Academy members. Because of the amount of information in DataDerm, we can answer questions about medications, procedures, diagnoses, and visit information stratified by demographic information.”
The process involves submitting the request through the website, which then gets sent to the DataDerm Governance Task Force for review and approval, said Aninos. Access the data request form.
Researchers may submit inquiries and the DataDerm analytics team will conduct an analysis of the aggregate data from DataDerm to generate a report back to the original researcher, Etkin said. Researchers will never have access to any personal data about patients or the dermatologists who provided their care.
“While we often work with those in academics, all members can put in a request to ask us questions about the data,” Etkin added.
Quality improvement and MIPS reporting
DataDerm allows its users to evaluate the quality of care that they provide by offering easily accessible benchmark reports on dermatology-specific or applicable quality measures. By simply logging into your dashboard, users can view reports that drill all the way down to the individual patient level to see how the care you provide fares against these measures.
“For me, reporting how many of my patients have had the influenza vaccine has absolutely no relevance,” said past Academy President George Hruza, MD, MBA, FAAD, in a previous DermWorld article. “But these dermatology-specific measures can be used to make meaningful improvements in your practice, and I would think the vast majority of dermatologists care about the quality of care they provide. DataDerm gives physicians the ability to see and focus on those areas where they can make improvements.”
Access MIPS and AAD QCDR measures.
In addition to using data to substantiate the quality of care you provide, DataDerm allows its users to avoid penalties and earn incentives through the Merit-based Incentive Payment System (MIPS), said Stephanie Bruno, MPH, the Academy’s senior manager of DataDerm recruitment strategy. DataDerm, a designated Qualified Clinical Data Registry, provides a pathway for meeting quality reporting requirements. All members that reported MIPS through DataDerm in 2021 avoided the penalty and earned an incentive.
With the purchase of the Academy’s MIPS module, DataDerm streamlines MIPS reporting and helps members report for quality, promoting interoperability, and improvement activities categories.
MIPS Value Pathways (MVPs) are on the horizon, so it’s becoming even more important to work with a registry like DataDerm, said Alyssa Burns, MHA, the Academy’s senior manager of DataDerm compliance strategy. “We’re at the point where you have to find a registry and stick with it because they are going to be your subject matter experts as you navigate through MIPS and newer programs like MIPS Value Pathways,” Burns said. (Read more about MVPs.) As MIPS measures get topped out, it will be critical to have a registry with access to QCDR measures, she noted. The Academy currently has 10 dermatology-specific QCDR measures that can only be reported via DataDerm.
The American Board of Dermatology (ABD) has determined that participation in AAD’s DataDerm will satisfy continuing certification requirements. One Quality Improvement (Part IV) activity must be completed in the first five years of each 10-year certification cycle and another in the second five years of the cycle.
If you are an active participant in DataDerm, you have already demonstrated your commitment to quality improvement. Consequently, you are eligible to benefit from this arrangement with the ABD. You don’t need to take any additional steps to fulfill this requirement. The information will be shared with the ABD through your CME transcript. If you remain an active participant in DataDerm, this information will be shared with ABD each year.
In the last few years, many members have applied for CMS’s Extreme and Uncontrollable Conditions exemption due to COVID-19. In 2024, however, the exemption is going away, Etkin noted, which means that many members will have to submit to MIPS again next year to avoid a financial penalty. “Academy staff is here to help walk members through getting DataDerm integrated and ready for use, and also aiding staff in any and all MIPS reporting questions,” Burns said.
“DataDerm is a treasure trove of information for anyone interested in improving how they provide patient care,” said Dr. Hruza in a 2019 DermWorld article. Additionally, “It’s incredibly valuable not just to physicians individually, but it can inform how dermatology is perceived.”
The power of data increases every day, said Etkin, and as such all dermatologists need to participate to get an accurate snapshot of dermatology. “DataDerm will allow the Academy to harness data about the practice of dermatology and advance dermatologic science, quality, and practice management.”
“It’s a great way to give back to your patients and to the specialty to use real-world evidence to see what medicines are working well in dermatologic treatments,” Dr. Dellavalle said.
See a list of EHRs DataDerm recognizes for integrating with the registry, categorized by how fully they integrate. View the list.