Real-time patient data transforms the practice and improves care

Data-driven transformation of care, one of five strategic goals under the Academy's 2019 Strategic Plan, emphasizes the Academy’s role in helping dermatologists improve patient care through the collection and transfer of data, most prominently through the DataDerm™ clinical registry. Excited about evaluating the data from DataDerm, Marta J. Van Beek, MD, MPH, secretary-treasurer for the AAD Board of Directors, gives Dermatology World Weekly an exclusive interview on what the findings reveal about patient populations, practice models, and advocacy efforts on the horizon.

DWW: During a focus group interview, an Academy member said that the AAD “needs to invest in research to assist in preserving the specialty.” Why is this such a critical need for dermatology? 

Dr. Van Beek: Dermatologists interface with a lot of other specialties, and we need to demonstrate our value in the context of general medicine and other specialty medicine. It’s especially important for any specialty to continually invest in research to redefine the quality that it provides to the house of medicine, which, in turn, helps establish policy on health, medical, professional, and governance matters. The data, research, and quality measures we gather and aggregate from clinical data registries can help influence policy recommendations, and help entities like the AMA define quality medicine.  

DWW: Launched in 2016, DataDerm, the Academy’s first and dermatology's most comprehensive clinical data registry, has more than 2,700 members participating. Why is specialty-wide participation in this platform important? 

Dr. Van Beek: With any registry, your data is only as good as the people who are contributing the data. If we only have a certain segment of the dermatology population submitting data, then our patient data will only represent a specific segment of the population. Right now, we need to continue to push to on-board academic medical centers because that will give us patient representation for complex medical disease and Medicaid patients, who are predominately seen by academic centers. Both are important patient populations to evaluate to make sure they’re also getting the dermatology services that they require. 

A large segment of DataDerm participants include private practice dermatology physicians. This is unprecedented. For the first time, we’re able to see how patients with private insurance are being treated. Most of what we know in dermatology has been predicated on studies that have used Medicare data, which is representative of the 65-and-over population. We know what the state-of-care is in those over the age of 65, but now, due to a strong private practice demographic contributing data to DataDerm, we’re able to see how care is done for patients under 65. 

Without participation from all members representing all practice models, we won’t have the richness in the data to effectively examine differences in care that are specific to certain patient populations. Every practice model — academic, multispecialty, private practice, private equity — has its own way of doing things as determined by dermatologists making the best decisions to best serve patients’ needs. Being able to look across a continuum at each one of those practice models, we move away from patient population generalizations to addressing the unique needs of a patient population based on treatment and their requirements for safety and maintenance.  

DWW: What is the Academy doing to ensure patient care is continuously improved through the collection and transfer of data?

Dr. Van Beek: We are hoping to use DataDerm as the baseline to develop future quality measures that are meaningful to both the patient and the physician and that are specific to dermatology. 

MIPS quality measures (adjudicated through CMS) are predicated on continual quality improvement. CMS requires physicians to submit quality measures, which must be based on identified gaps in care. For example, CMS may approve a quality measure for examining a psoriasis patient and prescribing a biologic after determining the patient doesn’t have an underlying infection. Depending on treatment data available in DataDerm, this may demonstrate a gap in care because potentially only half of dermatologists address this treatment plan regularly. CMS only accept measures where you can demonstrate improvements that respond to gaps in care.

There will continuously be a need for new measures for quality improvement because as each quality measure that eventually tops out at 90-100% compliance or so, CMS will require a new one. In order to develop new measures and identify gaps, we need to know what the current state of dermatologic care is. Clinical data registries help us determine how doctors are treating certain diseases and how often they’re seeing patients so we can set a benchmark. DataDerm, now in its third year, is still in its infancy and dermatologists are just starting to harvest some of the data. Our data is not yet mature, but it’s an exciting time because many of the baselines for common practice that we’re evaluating are currently being reported.

DWW: DataDerm connects data on millions of patients from thousands of dermatologists nationwide. How does that data translate to ongoing quality improvement at both the practice and specialty levels? 

Dr. Van Beek: Practices that currently contribute to DataDerm have access to their own practice-specific dashboard, which allows them to track performance in a specific measure. So, in real time, dermatologists can review patient records and follow up, if needed, to improve care as it applies to a MIPS quality measure.

On a specialty level, DataDerm, for the first time, is giving us an idea of how patients with psoriasis, eczema, and acne are treated across the country. We never knew how the average patient from all age groups was treated. Most of what we know about dermatologic care is based on the Medicare population of 65-and-older, clinical trial patients, or patients in a case series in an academic medical center.  Now, dermatologists on the ground, in real world settings are sharing data from patients they’re treating in real-time, and not just from a controlled, segmented patient population. Real-world dermatology is treating and addressing patient needs from varying demographics to provide us with a platform to prove and back up the research on the state of care. 

DWW: Different practice models operate in very different ways. All in all, the Academy wants our members to have the wherewithal to operate effectively and efficiently whether manning a single practice, an academic practice, large or multi- group practice, and all that lies in between. How will data-driven tools, like DataDerm, enhance identification and communication of best practice models? 

Dr. Van Beek: For a practice that has multiple practice sites, the practice manager can monitor the sites to identify how they’re performing on MIPS measures. And certainly, if they feel like one site is doing really well as compared to other sites, they can take protocols and procedures from the higher-performing site and provide them to the site that’s not performing as well. Just from looking at the standard of care, we can look at different practice models doing exceptionally well on measures and share tips and guidance with other practices to make sure they have the option to provide the same quality care to their patients.

Outside of quality measures, different practice models need different forms of information. Academic medical centers are required to have documented professional improvement activities for faculty. We’re hoping people will be able to use DataDerm to fulfill that requirement for the AMC. Multi-specialty clinics are required to report on certain quality measures that may or may not be MIPS measures. DataDerm may be the game-changer that fulfills those requirements for those multispecialty clinics. Small private practices can use the data to improve their measure performance in real time. Last, but not least, large conglomerate or private equity groups can use DataDerm to access quality data to model best practices from one practice to another.

DWW: We know members care a lot about their patients and want to provide the best care possible. How can the Academy use data collection through DataDerm to inform advocacy efforts?

Dr. Van Beek: Advocacy is probably the biggest payoff for DataDerm. One reason is that DataDerm informs us that the average psoriasis patient, for example, needs to see their dermatologist a certain number of times a year in order to get the best treatment. This statistic lends us the facts we need to advocate with private payers saying: “we know psoriasis patients improve the most when they have access to their dermatologist at least ‘this’ many times a year.” Giving private payers this context can address issues with patients having limited access to dermatologists due to provider caps. 

The other thing we can do is advocate for access to medication. The average psoriasis/acne/eczema patient may get better very quickly on a drug that often gets initially denied by the insurance company. With treatment records from DataDerm, we can demonstrate that it may be cheaper for the insurance company to approve the drug initially. When a drug can treat a patient faster but is more expensive upfront, insurance companies can still benefit, cost-wise, over the long-term. When they [insurance companies] reject a medication initially, they risk paying out more dollars for frequent patient visits that demonstrate the failure of every other drug before the initial, more promising drug is approved.
Not only could we advocate for access to medications, but if we know a medication works really well, we can advocate with that insurance company to say: “Why do we need a prior authorization for that medication when we know that it adds incredible value, gets the patient better, and allows the patient to visit the physician less frequently because they’re better?” 

What’s just as exciting is that DataDerm gives us the platform to advocate on the state and federal level, too. As we look at quality of care across different types of delivery, we can demonstrate to state legislators the importance of implementing scope of practice laws across the country. At the federal level, we can advocate for research funding by demonstrating that the true prevalence of a specific rare disease is much larger than what we originally thought. With DataDerm, we’ll have the data and documentation to advocate to the NIH that more research funding is needed for a population of patients that don’t have a viable treatment option. 

DWW: With more than 2,700 individuals participating in DataDerm, we already have significant patient data in the platform. What information or insights have you seen that might illustrate for members the potential of this platform? 

Dr. Van Beek: We currently have 23.6 million patient visits into our system that we’ve started to record data about. However, dermatologists treat 3,000 different diseases  — both rare and common. There are many diseases about which we don’t necessarily have population data. Yes, we have been trained on the disease and can execute a treatment plan, but seeing and treating those patients in real-time and logging the data is key. 

Just seeing the sheer numbers of what we thought were exceptionally rare diseases, we can now evaluate the frequency that patients diagnosed with these rare diseases see their physicians. This indicates two vital things: the severity of the disease and how fast or slow it can get better. 

Having this information is extremely helpful. For many dermatologic diseases, we don’t have comparative studies on what works best, nor do we necessarily know how fast patients respond to treatment on average other than our own anecdotes. The data empowers us to advocate for new and improved treatment that gets unique patient populations better faster and funding from payers or government to go toward better access or research efforts.