Creation of the population-based cancer registry in Ukraine and
its information technology developement began
in 1989 at the Nonprofit Organization «National Cancer Institute» of Ukraine. This was initiated and performed with
the efforts of the Department of Scientific Fundamentals of Cancer Control.
The aim was to create a reliable information basis for population-based onco-epidemiological studies
(burden of cancer, its dynamics and features,
assessment of anti-cancer measures taken and their effect)
as well as for clinical needs.
The organizational fundamentals for the National Cancer Registry (NCRU)
were
(1) the oncological service system, which exists in Ukraine since the 1950s
and consists of the oncological health care institutions in each oblast,
and
(2) the state cancer registration system with its well-established
ways of informing through paper notifications on each diagnosed and/or treated cancer
case (is currently regulated by the Orders of Ministry of Health of Ukraine
No 845 of 01.10.2013, No 1 of 10.01.2006 and No 629 of 10.10.2007),
as well as obtaining of data on deaths of cancer patients in the local
bodies of state registration of civil status.
The database of the NCRU is distributed by regions and contains
information about all Ukrainian citizens with cancer.
In some oblasts (Vinnytska, Zhytomyrska, Luhanska, etc.) the unified information technology
of NCRU has been implemented in the early 1990s,
but in most ones the automated registration of the personalized information about cancer patients
was introduced during 1996-2000 after the approval of
the Order of Ministry of Health of Ukraine No 10 of 22.01.1996
"On the establishment of the national cancer registry of Ukraine".
At the beginning, the source for the electronic database of NCRU were the
accumulated in regional oncological health care institutions paper files that contained
information about each cancer patient who was registered and alive at the year of
NCRU information technology implementation, including those diagnosed in 1930-1990.
In most oblasts, in the year of oblast population-based cancer registry start-up,
information on all cancer patients who died in that year
was also entered into the electronic database.
The starting date of registration of complete cancer incidence and mortality in each oblast
is different; since 2000, the unified information technology for cancer
registration has covered all oblasts of Ukraine,
but complete data on cancer mortality in whole Ukraine are available in NCRU since 2002.
Until 2014, the NCRU database had annually increased by 150-160 thousand of new cancer cases.
After 2014 the NCRU does not receive data from the Autonomous Republic of Crimea,
and Donetska and Luhanska oblasts are covered by the NCRU unified information technology only partially,
that is why the annual number of new cancer cases in this period was about 140 thousand.
At the beginning of 2023, the NCRU database contained more than 4 million records on cancer patients,
of which more than 1 million were registered as supposed to be under follow-up
(
http://www.ncru.inf.ua/publications/ucr_db_today.pdf).
The consolidated database of NCRU consists of
the databases of oblast cancer registries
that operate in the regional oncological health care institutions.
Each oblast cancer registry aggregates information about all cancer patients who permanently
residing in the oblast. The information technology of NCRU facilitates regional cancer registries
to generate on-line (prompt) information for annual state statistical reports
immediately after the end of the reporting year
and to serve many information requests from local authorities and other users.
Once a year, the central unit of NCRU, which is
located in the Department of the Nonprofit Organization «National Cancer Institute» of Ukraine,
merges oblasts databases into a general database of the whole Ukraine for calculating statistics
and creating information and analytical materials on cancer epidemiology for publication in the
annual Bulletin of the NCRU "Cancer in Ukraine: incidence, mortality,
prevalence and other relevant statistics",
conducting onco-epidemiological research and publishing its
results in the scientific journals.
The central unit of NCRU also generates sample databases for participation in the international
studies and projects, answers the information requests, etc.
The
Bulletins of NCRU contain
the most correct statistics that depict cancer burden in Ukraine.
To ensure greater completeness and reliability of the published data,
the NCRU calculates the adjusted rates of cancer incidence and mortality
not earlier than one calendar year after the end of the reporting year
(or after the last year of observation for the long-term population study).
As a result, the adjusted rates change by 5-15% compared to their operational
(prompt) reporting values received by the Center for Medical Statistics of
the Ministry of Health from oblast cancer registries
at the beginning of the next after reporting year.
We show on-line (prompt) data of the last year in the
relevant part of each nosologic section of the Bulletin,
but one should consider them only as rough provisional information
that will be amended.
If there is no extreme outbreak in the process, the adjusted cancer
incidence and mortality rates of the year before last describe
current cancer burden in Ukraine and oblasts most objectively.
In the current period of the reformation of health services,
the adjustment period for cancer registration very likely
should be extended as a consequence of the worsen discipline of sending
notifications about the diagnosed and/or treated cancer cases
to the oblast cancer registries and the complicated access of their employees
to the data on patients' deaths in regional bureaus of vital statistics.
In the international practice, the adjustment period for cancer data
lasts at least 2 years.
The NCRU is a member of the
European Network of Cancer Registries (ENCR).
The NCRU database (its anonymized records) is used in such WHO publications as
"Cancer Incidence in Five Continents"
( Vol. X,
Vol. XI
and
Vol. XII),
"International Incidence of Childhood Cancer", Vol. III,
which indicates compliance with the modern international requirements for the registration
of cancer information, as well as in a number of international projects, such as the
European Cancer Information System,
Global Cancer Observatory,
Global Cancer Facts & Figures,
Global Burden of Disease Study
and others.
The principle of organization of the NCRU database is aggregation (consolidation)
of information about the oncological diagnoses of the patient,
all episodes of his treatment and observation into a single electronic registration card.
The content of this card is determined by
the form No 030-6/o "Registration card of a patient with cancer"
(see
example and
general data structure).
More detailed information about patients - information about
episodes of hospitalization and inpatient anti-cancer treatment - is contained in the
hospital cancer registries (HCRs), which accumulate respective databases
in the oncological health care institutions. Currently, the unified information
technology of HCR, which is developed with similar to the NCRU information model,
is functioning in 28 specialized medical institutions,
including the largest oncology clinics of Ukraine -
the Nonprofit Organization «National Cancer Institute»,
Kyiv city oncological center, Vinnytsia, Kharkiv, Lviv oblast oncological centers
and other oblast, city or rayon oncological dispensaries.
HCRs collect detailed
information on the special treatment provided, in particular
· chemotherapeutic
(drug in terms of the international non-proprietary name, method of administration,
total dose)
· radiation (its type, location and dose of radiation),
· surgical treatment protocols (names of interventions and operated organs/sites,
type of anaesthesia, blood loss, surgeons, etc.), as well as
· information about
the patient's vital and health status (concomitant pathologies, complications,
metastases, recurrence of the disease, etc.).
About 80% of cancer patients in
Ukraine receive medical care in inpatient departments of the oncological health
care institutions at the place of their residence, and so, most of them are registered
in the database of the relevant HCR.
The data structure and software of the NCRU and HCR systems are harmonized
in terms of a common information model. Due to this, the technology of
the automated data exchange between the hospital and the population-based registry
was created, based on the formation of the electronic report form
("electronic hospital abstract report") that contains information
in accordance with
the form No 027-1/o.
Appropriate electronic hospital abstracts are automatically generated
by the HCR system for each patient with a malignant or in situ neoplasm who has been
treated in the hospital. These files are subject to transfer to the regional population-based cancer registry.
Processing of the electronic hospital abstracts avoids multiple registrations
of the same data and minimize errors that may occur when entering data
from the paper docs, it facilitates search operations and identification of the registered
patients and it is one of the tools to ensure registration completeness.
Developed in the NCRU programs and means of data linkage, together with
the experience of the automated processing of data from various sources allow
to conduct research that is extremely time-consuming when using traditional technologies.
· In cooperation with the Scientific Center for Radiation Medicine,
search is being conducted for cases of malignant neoplasms among the liquidators
of the Chernobyl accident.
· Joint research with the Institute of Endocrinology
and Metabolism is underway.
· In cooperation with the Institute of Occupational Medicine,
attempts were made to compare large arrays of data about the exposed to the occupational
risks persons with the NCRU database to determine the degree of risk of cancer
in this population.
· Technology for the automated search of cancer patients' deaths
in a regional death registry was worked-up, which allowed detection about 10% of deaths,
which were not found by manual extracting (we detected the cases of death mainly from
causes, which were not related to cancer).
The role and capability of such tool for the processing of medical information
grow steadily with the implementation of new electronic databases
in the field of health care in Ukraine.
Since the establishment of the NCRU and HCR systems, we implemented
standards and rules of
· registration of cancer according to the
International Classification of Diseases for Oncology (ICD-O),
· definition of stage of the disease according to the TNM classification,
· rules for registration of multiple cancers,
· checks of compliance and quality of data, etc.
NCRU and HCR provide registration of tumour of any site and any morphological
type according to the ICD-O specifications as well as
· the automated definition of the appropriate ICD-O
topography and morphology codes
(in the NCRU, transition to
the 2nd revision of the 3rd edition of the ICD-O,
available on
the website of IACR ,
has been done in February 2022);
· coding of children's neoplasms according to the
ICCC classification is also provided.
The NCRU and HCR software provide identification of each patient and have
advanced functions of the assistance to registrar that help to avoid
many errors and contradictions in the registered data, duplication of records about
patients and their diagnoses and the like.
· The level of duplicate registration of patients or cases was reduced
to rare accidents, while 10-15% of repeatedly registered persons were
found in paper files during the proceeding to the automated system.
· The unified automated procedures have reduced subjectivity in such important characteristics
of a tumor diagnosis as ICD code (which is determined automatically based on the site
and the morphological type of the tumour) and stage (is determined automatically based
on the registered tumour parameters of TNM classification; today we use its 6th edition).
· The transition from ICD-9 to ICD-10 codes in 1998
was automatized for all databases of NCRU and HCRs
using the procedure of the automated determining the appropriate ICD-10 code based on the
morphological type, site and behaviour of each tumour registered.
· The same unified
approach provides the updating of ICD-O classification, as well as provided in February 2022 the
automated transition of NCRU to the currently introduced in Ukraine the Australian modification of ICD-10 classification
(
ICD-10 AM ).
The automated technologies and advanced automated data check procedures
significantly increase the reliability of oncological information.
The calculation of annual state statistical reports as well as various additional report forms
and rates is performed by the regional cancer registries automatically
using the unified software on their database.
The unified approach eliminates regional differences in the
interpretation of typical situations and allows justifying and, if necessary,
objectifying the obtained rate with conducting direct review of data
of each patient, who was taken into account when calculating this number or rate.
The central unit of NCRU provides information and methodological assistance to
all regional cancer registries and HCRs, support and improvement of the software
and codifiers, control of completeness and quality of the registered data and conducts
epidemiological researches at the national level. Software tools that support
standardization and data quality in the NCRU are regularly updated. Developed
in the central unit of NCRU information technologies of NCRU and HCR are unique and there are
no similar systems in Ukraine yet.
The completeness and timeliness of obtaining data about cancer patients can be significantly
improved with the connection to the electronic health care system (eHealth),
provided that it will have all the specific parameters for cancer
registration.
The Concept of eHealth Development declared
«gradual integration of eHealth with the existing national
and branch registries», in particular with the NCRU,
but so far there were no constructive contacts between the NCRU and the eHealth.
Many years of our experience show that the extent and nature of discrepancies between
reports which were obtained on-line (promptly) and/or as a result of paper docs processing,
compared with those obtained on the NCRU data (it was especially evident in
the first years of introduction of the information technology), call into question the
practical value and the effectiveness of the statistical information, which is
NOT based on modern principles of collection and control of compliance with the
rules of registration , processing of personal data and reporting in the
field of oncology.
It is equally
important to realize that even after the abolition of notification paper forms and
transition to solely electronic registration systems, doctor still has a duty to
provide proper
and complete data within the prescribed time; and without keeping these rules there
is no reliable medical registry in any country.
NCRU's data structure (in Ukrainian)