The value of health data in national registers: A scientific research and healthcare quality improvement tool

Manel Ben Fdilen, Meriem Ben Tarjem

Several commonly observed pathologies in healthcare services, such as acute or chronic neurological and cardiovascular diseases, systemic diseases, and hereditary diseases, continue to present challenges in terms of diagnosis and patient orientation. These diseases have been extensively studied to constantly evolve management recommendations.

 Despite advancements in prevention, diagnosis, treatment, and monitoring, these diseases still represent a public health problem due to their high frequency, multifactorial and clinical polymorphism, as well as their significant impact on morbi-mortality, and economic costs.

In Tunisia, the lack of national registries that establish the epidemiological profile of various diseases hinders our understanding and care protocol improvement. To address this, it is crucial to continuously update the data. This will enable the development of guidelines for diagnosis, treatment, and follow-up, while reducing healthcare burdens. By doing so, we can improve disease management and optimize healthcare resource allocation.

In this context, it is essential to emphasize the importance of health data in establishing national registries and their pivotal role in advancing scientific research and enhancing care quality. By doing so, we gain valuable insights that directly inform the development of effective health policies firmly rooted in current epidemiological information.

National Registries: An Essential Resource for Public Health Surveillance and Research in Tunisia

National registries are defined as "the continuous and comprehensive collection of individual-level data pertaining to one or more health events in a geographically defined population, for the purposes of surveillance, research, and evaluation in public health, by a team with appropriate expertise."

The geographical definition of national registries encompasses several key aspects, such as the scope of diseases, medical specialty, population defined by age and sex, coding nomenclature, and data accessibility.

When determining the scope of diseases covered by the registry, consideration is given to the relevant medical specialties and domains pertinent to data collection. This ensures that the registry captures comprehensive information specific to the designated medical areas.

By defining the population in terms of age and sex, the registry provides precise demographic data. This allows for a better understanding of the characteristics of the population affected by recorded health events.

The registry's coding nomenclature plays a vital role in organizing and analyzing recorded health events. It entails the use of a standardized classification system to assign specific codes. This facilitates data management, comparability, and interoperability across different registries and healthcare settings.

Lastly, data accessibility entails determining the appropriate access to recorded data, including the conditions and purposes for which it can be accessed. Striking the right balance is essential to sensitive data confidentiality and protection. It also enables authorized individuals and organizations to utilize the data for research, policy development, and initiatives aimed at improving healthcare.

In Tunisia, scientific societies play an essential role in managing registries by establishing the necessary policies and strategies for their implementation. These registries are specifically designed to address healthcare priorities, needs, and essential decision-making criteria. Furthermore, certain registries are part of national public health strategies, such as regional cancer registries. This demonstrates their importance in tackling major health challenges.

A concrete example is the Northern Tunisia Cancer Registry (NTCR), which was established by ministerial decree. The Epidemiology, Medical Informatics, and Biostatistics Department of the Salah Azaiz Institute was designated NTCR headquarters. These registries play a crucial role in providing a clear picture of cancer epidemiology in Tunisia. They allow for an accurate assessment, identifying existing disparities between genders and different regions of the country regarding cancer prevalence and access to care.

Furthermore, these registries play a crucial role in detecting epidemiological changes. They guide awareness strategies, individual or mass screenings, and cancer combat efforts. They also contribute to making well-informed decisions regarding patient management while fostering innovation in treatments, monitoring, and research.

However, despite progress, the epidemiological profile of many diseases is insufficiently covered by national health registries and remains unknown. It is in this context that the Tunisian Society of Cardiology and Cardiovascular Surgery initiated, for the first time in Tunisia, an international registry called "The Big 4 CVD Registry" (Africa and MENA). This registry aims to establish the epidemiological profile, improve management, and monitor therapeutic adherence for four major cardiovascular diseases: atrial fibrillation, heart failure, coronary insufficiency, and valvular heart diseases.

This ambitious initiative requires significant financial resources and expertise, but it promises to contribute significantly to scientific research by providing relevant data. It also highlights the fundamental role of coordination, both at the national and international levels, in developing health data for scientific research.

Data roles in health registry development

In order to ensure a comprehensive collection of information for registries, it is essential to draw upon different data sources. These sources include archives and hospital statistics, clinics, private practices, public or private analysis laboratories, autopsy reports and death certificates. The use of these diverse sources allows for a comprehensive and detailed view of health events in the population of interest. This increases the accuracy and relevance of established registries.

However, it is important that personnel responsible for data collection and registry creation receive adequate training and follow clear operational procedures. This is to ensure data quality. Meeting this requirement, however, necessitates the mobilization of significant human and financial resources.

To establish robust governance of this data, a national strategy for digital health development (e-health) is being developed. This strategy encompasses various initiatives, including medical records digitization. This modernization of the data management system will facilitate the collection of essential information for establishing registries. In addition, it reduces data loss risk.

Additionally, data protection is essential during registry development. A precise legal framework must govern the registry, ensuring information confidentiality, securing access to data, and regulating their use in other scientific research endeavors. It is also critical to control the distribution, dissemination, and sharing of this data. Certain registries are subject to legal obligations outlined in ministerial orders, with the primary objective of ensuring confidentiality, as is the case with the RCNT (Northern Tunisia Cancer Registry).

To ensure registry reliability, evaluation and certification committees are in place to guide researchers who wish to use the data. The National Health Evaluation and Accreditation Agency accredits several registries, ensuring compliance and reliability of collected information. This process aims to establish trust among users and promote ethical and responsible health data use.

The development of national and regional networks, as well as collaboration between scientific societies, healthcare institutions, the Ministry of Health, and the public and private sectors, plays a key role. On the one hand, this allows for quality and comparability standards for registries. On the other hand, it promotes collaboration among registries and facilitates data flow.

Therefore, institutes, healthcare organizations, and the Ministry of Health must commit to supporting and accrediting these registries. Their engagement is crucial to ensuring the success and sustainability of these initiatives, thus guaranteeing the reliability and value of the collected data.

In conclusion, it is highly advantageous to regularly update the national coverage of health registries in Tunisia. This would be done by assessing the range of pathologies they cover, and creating a national directory listing all accredited registries. This would guide researchers toward reliable data sources, facilitating research and analysis.

Moreover, it is essential to define and specify the data to be collected based on the specific missions of each registry. This approach rationalizes the budgetary, human, time, and effort resources invested in data collection. Interoperability between different databases and registries, as well as collaboration between the public and private sectors and national and international stakeholders, would be key factors in promoting registry data dissemination and utilization. This synergy would allow for optimal use of available resources and strengthen Tunisia's role as a major actor in international research and scientific dissemination.

By implementing these measures, Tunisia could enhance its position as a key player in health data governance. This is while adhering to legislative and scientific quality standards. It would also become an indispensable reference in public health research, improving care quality and making informed decisions regarding national and international health strategies.

Authors:

Manel Ben Fdilen is a doctor specializing in micronutrition and mesotherapy, with experience in conducting prospective and observational studies, as well as data collection. Her research interests lie in utilizing and analyzing health data for advancing scientific knowledge.

Meriem Ben Tarjem a statistician, has a strong background in risk calculation, having worked in the insurance sector for several years. In 2022, she made a deliberate shift in her career, focusing her expertise on data analytics projects in the fields of public policy and the social sciences.