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DataDerm™: Past, present, and future


Answers in Practice

By Victoria Houghton, managing editor, March 1, 2020

Dermatology World talks with Jeffrey Jacobs, MD, who, in February 2019, became the physician advisor for DataDerm — the Academy’s clinical data registry.

Question: Tell us a little bit about the history of the Academy’s clinical data registry, DataDerm — why it was developed and what its goals were/are.

Dr. Jacobs: The inception and preparation of DataDerm began several years ago, led by volunteer AAD members through the Ad Hoc Task Force on Data Collection Platform and Registries in collaboration with AAD staff who had expertise in registries and quality. DataDerm was launched in 2016 and serves as the registry and database of the American Academy of Dermatology. DataDerm is a clinical data registry developed by dermatologists for dermatology. DataDerm was approved by the Centers for Medicare & Medicaid Services (CMS) as a qualified registry for the 2016 Physician Quality Reporting System program and as both a Qualified Registry and Qualified Clinical Data Registry (QCDR) for 2017, 2018, 2019, and 2020 Merit-Based Incentive Payment System (MIPS) reporting. The goals of DataDerm are to provide dermatologists with a registry and database, under the umbrella of the American Academy of Dermatology, that will serve as a platform for science, quality, and practice management.

Question: What is the current state of DataDerm in terms of number of participants, patient encounters, etc.?

Dr. Jacobs: In the most recent reporting period, DataDerm had nearly 1,000 active participants representing 2,900 physicians, 9.5 million unique patients, and 25.6 million patient visits.

Question: How can DataDerm ensure and/or improve quality dermatologic care for its participants?

Dr. Jacobs: Perhaps the most important function of DataDerm is to serve as a platform to measure and improve quality. In 1966, Avedis Donabedian published the theory that three domains of quality exist in medicine: structure, process, and outcome. This conceptual model is known as Donabedian’s Triad. DataDerm will be a tool to measure quality in all three domains of Donabedian’s Triad.

In 2010, Michael E. Porter, PhD, defined value in health care as, “health outcomes achieved per dollar spent.” Although this definition of value is often quoted as: value = quality/cost, the original manuscript written by Porter and published in the New England Journal of Medicine describes the following equation: value = outcome/cost, perhaps demonstrating that the key component of Donabedian’s Triad is outcome! It is certain that in the future, DataDerm will be used as a tool to measure both quality and value.

Question: How can DataDerm improve patient satisfaction and practice efficiencies?

Dr. Jacobs: As DataDerm evolves and matures, it may become a platform that allows for sharing of information with patients, including biopsy results and data about quality of care.

Question: How is DataDerm helping physicians with reporting requirements (i.e., the Merit- based Incentive Payment System)?

Dr. Jacobs: DataDerm is a Qualified Clinical Data Registry (QCDR). A QCDR is a reporting mechanism that was introduced in 2014 for the CMS Physician Quality Reporting System (PQRS) program — now the Quality Payment Program (QPP). DataDerm functions as a platform to allow dermatologists to participate in the QPP. In 2019, the Performance Measurement Committee (PMC), Council on Science and Research (CoSR), and Executive Committee of the American Academy of Dermatology approved a portfolio of newly developed measures as appropriate for reporting to the QPP. CMS has now approved eight measures for use in the QCDR for 2020. Check out the measures.

These measures are the result of a multi-year effort by the Academy to increase the number and type of measures for assessing, monitoring, improving, and reporting dermatologic care. In 2018 and 2019, four physician workgroups worked to develop these meaningful quality measures, based on a priority list generated by and approved by the Academy Board of Directors, specifically skin cancer and inflammatory skin disease. These measures allow DataDerm to meet the requirements of the QPP.

Question: How can data from the registry help when advocating for dermatology as a whole with policymakers and payers?

Dr. Jacobs: The American Academy of Dermatology Association (AADA) serves as the resource for dermatologists for government affairs, health policy, and practice information. The AADA plays a major role in formulating policies that can enhance the quality of dermatologic care. Data from DataDerm will be critical to supporting the advocacy efforts of the AADA during interactions with multiple government agencies and professional organizations and societies, including CMS, the FDA, the CPT Editorial Panel, and the Relative Value Scale Update Committee (RUC).

Question: You were selected to serve as a physician advisor specifically because of your 20+ years of experience working with multiple other clinical data registries. Given your experiences, what do you think the future holds for DataDerm and where is the registry headed?

Dr. Jacobs: As medicine evolves, the importance of data continues to increase. In the future, DataDerm has the potential to allow the field of dermatology and the American Academy of Dermatology to achieve multiple objectives:

  • Measure and assess quality.

  • Provide a platform for benchmarking individual and programmatic outcomes in comparison to national (and potentially international) aggregate data.

  • Improve quality.

  • Generate new knowledge, in other words, research.

  • Provide data for multiple governmental agencies including CMS, the FDA, the CPT Editorial Panel, and the RUC, and therefore, prove the value of dermatologic care within the house of medicine. (For example, the RUC now accepts data from approved registries of professional medical societies as a factor when reviewing and recommending the value of medical and surgical services. Similarly, data from professional medical societies can assist the FDA in important decision making and approval-related decisions.)

The power of data increases every day. DataDerm will allow the American Academy of Dermatology to harness data about the practice of dermatology and advance dermatologic science, quality, and practice management.

Jeffrey P. Jacobs, MD, FACS, FACC, FCCP, serves as the physician advisor for DataDerm. Dr. Jacobs served as a cardiac surgeon at Johns Hopkins All Children’s Hospital from 1998–2019 and was a professor of surgery and pediatrics at Johns Hopkins University. Dr. Jacobs has served in leadership positions in multiple national and international registries. Dr. Jacobs has been a member of the Society of Thoracic Surgeons Workforce on National Databases since 2006 and served as its chair from 2015–2019. He also served as chair of the Society of Thoracic Surgeons Congenital Heart Surgery Database Task Force from 2006–2014.

Dr. Jacobs was instrumental in multiple domains of database and registry research and has published over 540 peer reviewed manuscripts. He has been the principal investigator on several extramural grants related to database science and has made important contributions in the science of medical database research in multiple domains.

Dr. Jacobs has no conflicts of interest.

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