How medical societies can unlock value from clinical data registries

This article was written with Dr. Caryn Etkin, Director, Clinical Registries and Quality Science, American Academy of Dermatology.

Qualified clinical data registries (QCDRs) are approved by the Centers for Medicare and Medicaid Services (CMS) to enable reporting as part of the Merit-based Incentive Payment System (MIPS). MIPS provides financial incentives for delivering high-quality care to patients. According to CMS’s list of QCDRs, 44 QCDRs supported the 572,000 eligible clinicians who submitted for MIPS for performance year 2024.

While many medical specialty societies originally established QCDRs to support members with MIPS reporting, CMS plans to sunset traditional MIPS in favor of the new MIPS Value Pathways, which is intended to simplify reporting processes. Additionally, there are financial incentives for clinicians to participate in alternative payment models, which exempt them from MIPS. As a result, MIPS is a less compelling reason for clinicians to participate in QCDRs. Amid these pressures, medical societies must expand their registry offerings beyond MIPS to stay competitive.

Since 2016, the American Academy of Dermatology’s clinical data registry, DataDerm, has supported dermatologists with MIPS reporting. In 2024, AAD recognized an opportunity to use DataDerm to meet the evolving needs of dermatologists, patients, and other stakeholders, and partnered with us to develop the future registry roadmap.

As part of that roadmap, DataDerm will help create practice benchmarks, improve dermatologic outcomes, support research on therapies and disease patterns, and deliver value to AAD’s corporate partners. In addition, DataDerm provides unique opportunities to inform clinical education and advocacy initiatives.

So what can other medical societies facing similar registry-related challenges learn from the AAD example? Here are three ways that medical societies can use their registries to deliver greater value and differentiate their offerings.

Improve patient care and experience

Clinical data registries offer a vast ecosystem of real-world datasets (RWD) comprised of rich patient- and encounter-level data. These registries also have reporting tools that allow clinicians to benchmark their performance and design targeted quality improvement (QI) programs. For instance, AAD’s Quality Innovation team collaborated with DataDerm on a project that uses psoriasis-focused MIPS measures to develop a learning network, where new tools, strategies, and systematic approaches to psoriasis care will emerge.

Many registries are also integrating patient-reported outcome (PRO) data, which provides clinicians with a more holistic understanding of the patient experience. Beyond MIPS, use cases for PROs include informing treatment decisions, monitoring symptoms, and understanding how interventions impact quality of life. For example, a physician might see that a certain medication improves a patient’s symptoms – but patient-reported feedback indicates that the treatment is difficult and time-consuming to administer. Based on this insight, the physician might prescribe a different medication with a simpler administration route.

Support research and advocacy

Many societies manage scientific journals, release position statements on behalf of their membership, and advocate for the interests of the specialty to CMS, legislators, and regulators. In many cases, clinical data registries can be used to supplement these efforts.

As valuable sources of RWD, registry data is often used for public health research (such as understanding disease prevalence). Other research-oriented use cases for registries include identifying risk factors for treatment complications, comparing the efficacy of clinical interventions, and identifying co-morbid health conditions. DataDerm has supported dozens of analytic requests, including challenges in the treatment and management of onychomycosis, the complex relationship between rosacea and cardiovascular disease, and the demographics of vitiligo. These use cases are particularly helpful for clinicians with a strong research focus, such as those at academic medical centers.

In some cases, research involving registry data can fulfill ongoing professional practice evaluation (OPPE) requirements. In fact, AAD members have used DataDerm to understand how their practice is performing against specific quality measures, allowing them to obtain OPPE credit through their participation in DataDerm.

Registries can also support clinical trial research, including:

• Matching practices with trials based on their patient populations
• Identifying clinicians who could serve as principal investigators
• Supporting patient recruitment
• Creating synthetic control arms.

Finally, registry data can help medical societies represent the interests of their members with payers and other organizations. The AAD’s advocacy arm, the AAD Association (AADA), has utilized data on treatment trends and patient care to fuel advocacy with payers and policymakers. AADA’s evidence-based efforts successfully opposed the 2024 MIPS reporting score increase and implemented CMS-approved quality measures for dermatologists, improving payment rates and patient care. Registry data has also been used for assessing the impact of Evaluation and Management (E/M) coding guidelines and to understand Current Procedural Terminology (CPT) coding to inform Relative Value Scale Update Committee conversations.

Derive commercial insights for industry partners

Many medical societies collaborate with pharmaceutical and medical technology companies. Clinical data registries can provide value to these partners by offering a source of anonymized procedure- and patient-level data that demonstrates how products are used in real-world settings, a value proposition that is difficult to replicate in other data sources.

One key use case is pharmacovigilance and safety monitoring. Registry data can enable companies to monitor and evaluate the risk of adverse events, which helps companies meet regulatory surveillance requirements and predict risk among certain patient groups.

Registries can also help companies understand product use by geography, clinician type, provider organization, and other factors to inform targeted marketing and/or education efforts. Similarly, medication data in registries can provide a longitudinal view of the patient and prescriber journey. As an example, AAD collaborated with Boehringer Ingelheim on a comprehensive educational program for a severe, rare form of psoriasis called Generalized Pustular Psoriasis (GPP). The project leveraged registry and claims data, evidence, predictive analytics, and subject matter experts to create a profile for dermatologists to better understand GPP patients and their treatment pathways.

A final, compelling use case is label extension – i.e., using registry data to identify product usage patterns and determine additional indications. Label extension studies can help make the case to regulators that a product is safe and effective for other indications.

Ultimately, using registry data for commercial insights helps support patient safety and increases the range of products available to prescribers.

With an increasing emphasis on member value and non-dues revenue growth (any funding the organization receives from sources other than membership dues), medical societies must find innovative ways to expand their registry portfolios. In the future, medical societies can leverage registries to improve patient care, support research and advocacy efforts, and meet the needs of corporate partners. And with greater technological efficiencies, these advancements can be accomplished with less human capital and greater automation.