Founding process of a registry of people with disabilities – methodological challenges and overcoming strategies
Proces osnivanja registra osoba sa Invaliditetom – metodološki izazovi i strategije Prevazilaženja
Article (Published version)
Metadata
Show full item recordAbstract
The benefits of having a database or registry of people with disabilities, methodological
obstacles and their overcoming strategies are identified in this
current topic. Benefits include a summarization of the clinical and demographic
profile of disabilities at a particular geographic region, providing
support for overcoming systemic barriers, improvement of health policy, special
services recognition and rendering, customized programs and regulated
management of available resources. Methodological barriers refer to the lack
of standardization in case-by-case assessments and the consequently questionable
accuracy of diagnostic and anamnestic data. Attention should be
paid to the use of various definitions, classifications and coding algorithms.
The quality of data obtained from systems that were primarily founded for
administrative and financial purposes may differ significantly from the data
collected by analysing internal databases of health and educational or social
wel...fare institutions. As a conclusion, important steps for the initiation process
of founding a national or regional database or registry of people with disabilities are introduced and listed. They should incorporate an analysis
of the implementation of various founding models, appropriate strategies selection,
an examination of available data sources and information systems,
verification of data standards, and methodology of collecting data, including
an electronic exchange of health-related data.
Prednosti baze podataka ili registra osoba sa invaliditetom, metodološke
prepreke i strategije njihovog prevazilaženja su izdvojene u ovoj aktuelnoj temi.
Prednosti uključuju rezimiranje kliničkog i demografskog profila ometenosti
na određenom geografskom području, pružanje podrške za prevazilaženje sistemskih
barijera, poboljšanje zdravstvene politike, prepoznavanje i pružanje
posebnih usluga, prilagođenih programa, kao i regulisanje upravljanja raspoloživim
resursima. Metodološke prepreke se odnose na nedostatak standardizacije
u procenama pojedinačnih slučajeva i posledično upitnu tačnost dijagnostičkih
i anamnestičkih podataka. Treba obratiti pažnju i na upotrebu različitih
definicija, klasifikacija i algoritama kodiranja. Kvalitet podataka dobijenih iz
sistema koji su primarno osnovani u administrativne i finansijske svrhe može
se značajno razlikovati od podataka prikupljenih analizom internih baza podataka
zdravstvenih i obrazovnih ustanova i ustanova socijalne zaštit...e. Kao zaključak,
predstavljeni su i navedeni ključni koraci za proces inicijacije osnivanj
nacionalne ili regionalne baze podataka ili registra osoba sa invaliditetom. Oni
bi trebalo da uključe analizu primene različitih modela osnivanja, izbor odgovarajućih
strategija, ispitivanje dostupnih izvora podataka i informacionih sistema,
verifikaciju standarda podataka i metodologije prikupljanja podataka,
uključujući elektronsku razmenu podataka povezanih sa zdravljem.
Keywords:
database / population-based study / disability, research / Serbia / baza podataka / populaciono istraživanje / ometenost / istraživanje / SrbijaSource:
Beogradska defektološka škola, 2020, 26, 2, 19-Publisher:
- Drustvo defektologa Srbije
- Univerzitet u Beogradu – Fakultet za specijalnu edukaciju i rehabilitaciju (ICF)
Funding / projects:
- The paper resulted as a part of the program activities of the Institute of Criminological and Sociological Research for the year 2020 approved by the Ministry of Education, Science and Technological Development of the Republic of Serbia. This work was partially presented at the XII Conference of Business and Science SPIN ’19 “Lean transformation and digitalization of Serbian industry” organized by University of Belgrade, Faculty of Organizational Sciences, Centre of Operations Management an held on November 7–8, 2019, in Belgrade, Serbia.
Collections
Institution/Community
rFASPERTY - JOUR AU - Milićević, Milena AU - Simeunović, Barbara PY - 2020 UR - http://rfasper.fasper.bg.ac.rs/handle/123456789/3550 AB - The benefits of having a database or registry of people with disabilities, methodological obstacles and their overcoming strategies are identified in this current topic. Benefits include a summarization of the clinical and demographic profile of disabilities at a particular geographic region, providing support for overcoming systemic barriers, improvement of health policy, special services recognition and rendering, customized programs and regulated management of available resources. Methodological barriers refer to the lack of standardization in case-by-case assessments and the consequently questionable accuracy of diagnostic and anamnestic data. Attention should be paid to the use of various definitions, classifications and coding algorithms. The quality of data obtained from systems that were primarily founded for administrative and financial purposes may differ significantly from the data collected by analysing internal databases of health and educational or social welfare institutions. As a conclusion, important steps for the initiation process of founding a national or regional database or registry of people with disabilities are introduced and listed. They should incorporate an analysis of the implementation of various founding models, appropriate strategies selection, an examination of available data sources and information systems, verification of data standards, and methodology of collecting data, including an electronic exchange of health-related data. AB - Prednosti baze podataka ili registra osoba sa invaliditetom, metodološke prepreke i strategije njihovog prevazilaženja su izdvojene u ovoj aktuelnoj temi. Prednosti uključuju rezimiranje kliničkog i demografskog profila ometenosti na određenom geografskom području, pružanje podrške za prevazilaženje sistemskih barijera, poboljšanje zdravstvene politike, prepoznavanje i pružanje posebnih usluga, prilagođenih programa, kao i regulisanje upravljanja raspoloživim resursima. Metodološke prepreke se odnose na nedostatak standardizacije u procenama pojedinačnih slučajeva i posledično upitnu tačnost dijagnostičkih i anamnestičkih podataka. Treba obratiti pažnju i na upotrebu različitih definicija, klasifikacija i algoritama kodiranja. Kvalitet podataka dobijenih iz sistema koji su primarno osnovani u administrativne i finansijske svrhe može se značajno razlikovati od podataka prikupljenih analizom internih baza podataka zdravstvenih i obrazovnih ustanova i ustanova socijalne zaštite. Kao zaključak, predstavljeni su i navedeni ključni koraci za proces inicijacije osnivanj nacionalne ili regionalne baze podataka ili registra osoba sa invaliditetom. Oni bi trebalo da uključe analizu primene različitih modela osnivanja, izbor odgovarajućih strategija, ispitivanje dostupnih izvora podataka i informacionih sistema, verifikaciju standarda podataka i metodologije prikupljanja podataka, uključujući elektronsku razmenu podataka povezanih sa zdravljem. PB - Drustvo defektologa Srbije PB - Univerzitet u Beogradu – Fakultet za specijalnu edukaciju i rehabilitaciju (ICF) T2 - Beogradska defektološka škola T1 - Founding process of a registry of people with disabilities – methodological challenges and overcoming strategies T1 - Proces osnivanja registra osoba sa Invaliditetom – metodološki izazovi i strategije Prevazilaženja IS - 2 SP - 19 VL - 26 VL - 30 UR - https://hdl.handle.net/21.15107/rcub_rfasper_3550 ER -
@article{ author = "Milićević, Milena and Simeunović, Barbara", year = "2020", abstract = "The benefits of having a database or registry of people with disabilities, methodological obstacles and their overcoming strategies are identified in this current topic. Benefits include a summarization of the clinical and demographic profile of disabilities at a particular geographic region, providing support for overcoming systemic barriers, improvement of health policy, special services recognition and rendering, customized programs and regulated management of available resources. Methodological barriers refer to the lack of standardization in case-by-case assessments and the consequently questionable accuracy of diagnostic and anamnestic data. Attention should be paid to the use of various definitions, classifications and coding algorithms. The quality of data obtained from systems that were primarily founded for administrative and financial purposes may differ significantly from the data collected by analysing internal databases of health and educational or social welfare institutions. As a conclusion, important steps for the initiation process of founding a national or regional database or registry of people with disabilities are introduced and listed. They should incorporate an analysis of the implementation of various founding models, appropriate strategies selection, an examination of available data sources and information systems, verification of data standards, and methodology of collecting data, including an electronic exchange of health-related data., Prednosti baze podataka ili registra osoba sa invaliditetom, metodološke prepreke i strategije njihovog prevazilaženja su izdvojene u ovoj aktuelnoj temi. Prednosti uključuju rezimiranje kliničkog i demografskog profila ometenosti na određenom geografskom području, pružanje podrške za prevazilaženje sistemskih barijera, poboljšanje zdravstvene politike, prepoznavanje i pružanje posebnih usluga, prilagođenih programa, kao i regulisanje upravljanja raspoloživim resursima. Metodološke prepreke se odnose na nedostatak standardizacije u procenama pojedinačnih slučajeva i posledično upitnu tačnost dijagnostičkih i anamnestičkih podataka. Treba obratiti pažnju i na upotrebu različitih definicija, klasifikacija i algoritama kodiranja. Kvalitet podataka dobijenih iz sistema koji su primarno osnovani u administrativne i finansijske svrhe može se značajno razlikovati od podataka prikupljenih analizom internih baza podataka zdravstvenih i obrazovnih ustanova i ustanova socijalne zaštite. Kao zaključak, predstavljeni su i navedeni ključni koraci za proces inicijacije osnivanj nacionalne ili regionalne baze podataka ili registra osoba sa invaliditetom. Oni bi trebalo da uključe analizu primene različitih modela osnivanja, izbor odgovarajućih strategija, ispitivanje dostupnih izvora podataka i informacionih sistema, verifikaciju standarda podataka i metodologije prikupljanja podataka, uključujući elektronsku razmenu podataka povezanih sa zdravljem.", publisher = "Drustvo defektologa Srbije, Univerzitet u Beogradu – Fakultet za specijalnu edukaciju i rehabilitaciju (ICF)", journal = "Beogradska defektološka škola", title = "Founding process of a registry of people with disabilities – methodological challenges and overcoming strategies, Proces osnivanja registra osoba sa Invaliditetom – metodološki izazovi i strategije Prevazilaženja", number = "2", pages = "19", volume = "26, 30", url = "https://hdl.handle.net/21.15107/rcub_rfasper_3550" }
Milićević, M.,& Simeunović, B.. (2020). Founding process of a registry of people with disabilities – methodological challenges and overcoming strategies. in Beogradska defektološka škola Drustvo defektologa Srbije., 26(2), 19. https://hdl.handle.net/21.15107/rcub_rfasper_3550
Milićević M, Simeunović B. Founding process of a registry of people with disabilities – methodological challenges and overcoming strategies. in Beogradska defektološka škola. 2020;26(2):19. https://hdl.handle.net/21.15107/rcub_rfasper_3550 .
Milićević, Milena, Simeunović, Barbara, "Founding process of a registry of people with disabilities – methodological challenges and overcoming strategies" in Beogradska defektološka škola, 26, no. 2 (2020):19, https://hdl.handle.net/21.15107/rcub_rfasper_3550 .