Disease reporting

By Andrea Niermeier, Contributing Writer, December 1, 2024

In August 2024, the World Health Organization (WHO) declared a global health emergency due to a strain of Mpox that had spread rapidly in the Democratic Republic of the Congo and surrounding countries. However, what became an international alert for the global medical community began with one or more vigilant physicians doing their due diligence and reporting symptoms and patterns of infections in patients. These reports set in motion efforts to survey and respond to the outbreak of the emerging strain of disease.

While dermatologists may not report conditions daily, the impact of fulfilling this responsibility, when necessary, can be that first pebble sending ripples to far-reaching corners of the world. Boris Lushniak, MD, MPH, FAAD, dean and professor of the School of Public Health at the University of Maryland, highlighted, “When we see people, we as dermatologists should be doing two things. We should be taking care of the patient — completing the history, doing the physical exam, and ensuring proper diagnostics, treatment, and prevention. However, we should also be fulfilling our obligation to the greater community.”

Disease reporting is paramount to disease surveillance, allowing local, state, and national monitoring for trend analyses as well as data collection in regard to risk factors and disease transmission. Early detection of disease outbreak allows for quick response and prevents public health emergencies through vaccination campaigns, public health advisories, contact tracing, and containment strategies. Dermatologists can play a vital role in local and global public health by investing time in disease reporting, as required by their jurisdiction, as well as participating in voluntary reporting opportunities.

History of reporting

Systematic disease reporting began in the United States in 1874 when the Massachusetts State Board of Health developed a weekly voluntary plan for physicians to report prevalent disease, and by 1901 all states required selected communicable diseases to be reported to local health authorities. William Schaffner, MD, professor of infectious diseases at the Vanderbilt University Medical Center, highlighted that one of these early reportable diseases was syphilis. Notably, around this same time, dermatologists were caring for underserved patients with syphilis, making advancements in the disease’s pathology, highlighting the relationship of skin diseases to the rest of the body, and cementing the dermatology field as an important player in public health. In fact, Dr. Lushniak noted that dermatologists at that time referred to themselves as professors of dermatology and syphilology, further interlinking them to public health concerns at the time.

Dr. Schaffner emphasized that reporting certain diseases to the local or state jurisdiction is more than just a responsibility. It is a legal requirement. “When a physician applies for and accepts a license to practice, they sign a paper agreeing to conform to the reporting obligations for that area.” In some states this resides in the state legislature, and in others authority resides in statutory provisions or state boards of health. While the requirements for reporting were initially placed on practices and institutions, about 30 years ago laboratory reporting was instituted for certain distinctive infections.

Types of reportable conditions

Each state’s board of health and local jurisdictions create the reportable disease lists for that area, many including the same types of reportable diseases or conditions. For example, zoonotic diseases like rabies, West Nile virus, and Lyme disease are often listed as well as food-borne illnesses due to infection from Salmonella species and E. coli, and waterborne illnesses cryptosporidiosis and legionellosis. Most reportable diseases are infectious diseases including conditions such as measles, mumps, rubella, varicella, hepatitis, meningitis, and sexually transmitted infections like gonorrhea and syphilis.

One subset of infectious disease is of concern because of their potential to be used as biological agents. Dr. Lushniak explained how dermatologists played an important role in the 2001 anthrax attacks, not only in caring for patients’ cutaneous skin lesions but also educating the rest of the health care community about anthrax skin manifestations. He emphasized the potential role of dermatologists on the frontline of these types of outbreaks. “If smallpox were ever to be used as a bioagent, we would be the first people to be called in to answer about a skin lesion. Not everyone knows the skin as well as we do. When some of these rare diseases show manifestations of the skin, we become the teacher for others.”

“Not everyone knows the skin as well as we do. When some of these rare diseases show manifestations of the skin, we become the teacher for others.”

Besides communicable diseases, many states also add certain congenital diseases such as spina bifida and types of congenital heart diseases. “As our concepts in public health have expanded, non-communicable diseases are beginning to find their way onto these lists as our capacity to diagnose and initiate treatment can avert a very serious consequence,” Dr. Schaffner added. Basic assessments of blood samples from infants look for deficiency diseases or certain genetic illnesses, and if they are positive, the state department immediately notifies the pediatrician.

One of the benefits of these localized lists for disease reporting is that counties and states know what common and atypically common conditions are found in their geographic area and can pursue what is going on in their own community. For example, Lyme disease used to be a disease only found in the northeastern United States, and at one time was viewed as almost a geographic disease. However, as it spread through the United States, Dr. Lushniak pointed out that states and local jurisdictions had the flexibility to be interested in the disease once it affected their area and react appropriately. Information gained from this kind of reporting allows a county or state to make informed decisions and laws about activities and environment related to topics ranging from insect or animal control, food handling, water purification, immunization programs, or STD tracking.

Perhaps one of the ways that disease reporting has become most impactful is not from the predetermined list of diseases but rather from the power of syndromic surveillance that reporting provides. Dr. Lushniak shared the hypothetical example of an allergen causing occupational disease. “If suddenly a dermatologist in a community sees several patients with contact dermatitis and they all work in the same manufacturing facility, this may not be a reportable disease. However, we, as physicians, can play detective and look at patterns. Once we see patterns in our community, informing local health authorities may begin a pathway toward solving a problem.” In addition, some states also ask clinicians to report unusual occurrences of disease to public health departments. For example, Kenneth A. Katz, MD, MSc, MSCE, FAAD, a dermatologist at Kaiser Permanente in San Francisco, commented that he reported a case of drug-resistant dermatophyte infection, now recognized as an emerging infection in the United States but not on his jurisdiction’s list of reportable diseases, to make sure the local health department was aware that the infection had reached San Francisco.

Reportable versus notifiable conditions

While the list of nationally notifiable diseases is updated each year, physicians, labs, and institutions are only mandated by law or regulation to report conditions on state or local lists. For example, reporting of coccidioidomycosis to the CDC is not required by some states where this disease is not reportable to local or state authorities.

The CDC, in partnership with the Council of State and Territorial Epidemiologists (CSTE), administers the National Notifiable Diseases Surveillance System (NNDSS). As public health practitioners conduct reportable disease surveillance at the local, state, and national level, data on the subset of reportable conditions designated as nationally notifiable are submitted to the CDC, which then tabulates and publishes this information in Morbidity and Mortality Weekly Reports (MMWR) as well as on the NNDSS website. The CSTE and CDC annually review the status of nationally notifiable diseases and recommend additions or deletions to the list based on emerging priorities. “As the interest in public health and the capacity and need for public health departments to intervene in order to maintain a healthy population have increased, so has the list of notifiable diseases,” Dr. Schaffner remarked. In fact, while in 2020 that list was less than 122 conditions, in 2024 that list contains approximately 126 conditions. This increase in the number of conditions has also been a trend on state and local reportable lists.

How to report

When a patient visits a physician and the physician issues a diagnosis or laboratory confirming a reportable disease, the hospital, physician, or lab sends information about the case to the public health department. Each state or local department of health has information on its website about which diseases are reportable and how to report. Depending on the disease, the reporting window may range from immediately to up to 72 hours from diagnosis, and the mechanism for reporting can vary from calling a specific number for a disease, to submitting an electronic form. When submitting information, sometimes public health authorities just want to know the number of people with infections, for example with influenza, and other times they need specifics about the individuals so that they can carry out further investigation as to where that person acquired the infection and who else might have been exposed.

While some public health websites may be more informative or user-friendly than others, Dr. Katz emphasizes that just like most things in medicine, the more times a physician reports, the more familiar they get with the process, the forms, and the requirements. “It is a slight burden to be sure, but we owe it to the good of the community to take the time.” Esther Freeman, MD, PhD, FAAD, associate professor of dermatology at the Harvard Medical School and director of Global Health Dermatology at Massachusetts General Hospital, agrees, adding that proactively checking a local health department site can help dermatologists become aware that some diseases that they may see multiple times a day, like zoster, are reportable under specific circumstances in some states.

Certainly, disease outbreaks can challenge reporting to local and state health departments said CDC spokesperson Rosa Norman, noting, “Public health emergencies like the COVID-19 pandemic put the spotlight on longstanding data challenges faced by the nation’s public health system. At the start of the pandemic, most data exchange between health care and public health, and across public health, was manual — relying on faxes, labor-intensive data entry, and other outdated technology.”

“Public health emergencies like the COVID-19 pandemic put the spotlight on longstanding data challenges faced by the nation’s public health system.”

Advancements in technology between public health and health information technology offer new opportunities for early detection and monitoring of health threats for agencies to investigate and respond effectively. Specifically, Norman pointed out the value of increased adoption of electronic health records (EHRs) to disease reporting, making electronic case reporting (eCR) possible. More than 41,000 health care facilities can now send eCR, up from over 25,000 at the start of 2023. Not only does this help move data quickly, securely, and seamlessly from health care facilities to state, tribal, local, and territorial public health agencies, it also provides a mechanism for these jurisdictions to send information — such as treatment or quarantine guidelines — back to the health system or physician, ensuring that each patient is effectively treated and that potential exposures are identified, tested, and cared for or prevented.

Helping public health agencies take fast action, eCR also enhances the quality of nationally notifiable data that CDC programs receive to inform prevention and control strategies as well as minimize administrative burden on physicians and non-physician providers and organizations. This is especially important for smaller practices that, unlike large institutions, may lack the staff for a rigorous reporting mechanism. Dr. Katz also affirmed the value of quality data from reporting. “It’s a two-way street. These conditions that are reportable at the local and state levels let us know what is going on in our communities. Ultimately, we know that all disease is local, and it helps our practices to know what the local epidemiology is so that it can inform our diagnosis and management of our patients. The only way we are going to actively know that is to report on the front end.”

Contributing to public health with registries

While state and local reporting helps physicians stay abreast of conditions locally, dermatologists can also give and receive a clearer global picture of emerging diseases by voluntarily contributing to registries. During the COVID-19 pandemic, the International League of Dermatological Societies (ILDS) and the AAD collaborated on a registry that initially collected COVID-19 cutaneous manifestations, allowing the COVID-19 Ad Hoc Task Force to collate cases from across the world rapidly and be among the first to publish on different dermatologic manifestations of COVID. As the pandemic continued, the registry included a module on vaccine-related reactions. Since then, the registry has been renamed the AAD/IDLS COVID-19, Mpox, and Emerging Infections Registry, reflecting not only the need to monitor Mpox outbreaks over the last few years, but any emerging infection as it becomes a threat. Most recently, drug-resistant dermatophytes were added, which can be accessed at staging.aad.org/tinearegistry. Dr. Freeman highlighted, “With cases of outbreaks and vaccine reactions from more than 70 countries and from every continent except Antarctica, the registry truly has a global reach.” While dermatologists should first report conditions to the local or state health department where appropriate, also reporting them to the registry provides researchers with detailed information on dermatologic symptoms that can help physicians and non-physician providers on a global level better understand manifestations, symptoms, and side effects. In many cases, such as the current drug-resistant dermatophyte outbreak, diseases may not be on a reportable list in state or regional office yet but can be reported to the AAD/ILDS registry, leading to real-time data analysis that can help inform diagnosis and treatment.

The AAD’s commitment to investigating emerging diseases is not only reflected in the registry but also in the organization of a permanent task force and emerging disease resource center. Recently, the AAD founded the Emerging Disease Task Force, of which Dr. Freeman is the chair. “Rather than being reactive,” she commented, “we now have a standing task force to really look at all global emerging diseases including, but not limited to, infections.” Additionally, this task force has helped to develop resources for health practitioners, ranging from managing a practice during a health emergency like the COVID-19 pandemic, to clinical recognition and wound care for Mpox lesions. The team has just launched a new online resource center for dermatophyte prevention, recognition, and treatment. All these resources are available on the AAD Emerging Diseases Resource Center webpage, which also allows physicians to alert the AAD to an emerging disease.

Responsibility on the frontline

While the disease reporting process often includes protected health information (PHI), it is covered under the Health Insurance Portability and Accountability Act (HIPAA) public health exemption, allowing covered entities to disclose PHI, without authorization, to public health authorities legally authorized to receive it for the purpose of preventing or controlling disease or injury. This includes reporting diseases as well as conducting public health surveillance, investigations, or interventions. While these procedures are necessary, Dr. Freeman reminds clinicians to hold empathy for their patients. “Practices like contact tracing, quarantine, and/or isolation may be needed in certain circumstances, but can have a substantial impact on people’s lives and may feel very stigmatizing. We encourage you to discuss the process with your patient if their condition falls into one of these categories. Not all reportable diseases will require contact tracing, for example, if there is no human-to-human spread.”

Jason Qu, JD, counsel at Powers Pyles Sutter & Verville in the firm’s nonprofit and health care practice groups, pointed out that physicians should take care to follow the pre-established reporting procedures of a jurisdiction and not disclose more than is necessary or called for on public health reporting forms, as these should be calibrated to be compliant with HIPAA. In addition, he encourages physicians working within a hospital or larger institution to be sure to understand what the institution requirements and expectations are in regard to reporting.

Of the many lessons in health care over the last five years, one of the most important has been the lesson of vigilance — a hallmark of disease reporting. “I think every patient is a potential canary in a coal mine, and as dermatologists we know that,” Dr. Katz remarked as he recalled dermatologist reports of unusual cases of Kaposi sarcoma, harbingers of what would later be known as AIDS in a global epidemic. Dr. Lushniak echoed this sentiment in the story of a dermatologist, Dr. Scott Norton, whose inquisitiveness about a pattern of skin lesions on premature infants led the CDC to discover injectable zinc shortages affecting patients in hospitals around the country. Dermatologists on the frontline have long been and will continue to be important champions of public health.

Additional DermWorld Resources