magistrsko delo
Tina Firanović (Avtor), Uroš Rajkovič (Mentor), Urška Ivanuš (Komentor)

Povzetek

Tehnološki napredek in razvoj v zdravstvu se odražata na različne načine, tudi na področju zbirk, ki vsebujejo osebne podatke. Podatki posameznikov niso dostopni samo za potrebe zdravljenja, temveč tudi preventive. V Sloveniji so pomemben del preventive na področju rakavih bolezni presejalni programi za raka, poznani kot ZORA, DORA in SVIT. Za nemoteno delo Državnega programa ZORA (Državni program zgodnjega odkrivanja predrakavih sprememb materničnega vratu) je ključnega pomena Register ZORA, v katerem so osebni podatki žensk, vključenih v program. Zaposleni pri Državnem programu ZORA se pri svojem delu srečujejo s prošnjami za podatke, katerih posredovanje je zakonsko opredeljeno. Da bi omogočili čim večjo, varno uporabo podatkov Registra ZORA za upravičen namen ter, da bi ob tem čim manj dodatno obremenili zaposlene na programu ZORA, je bil namen magistrske naloge pripraviti protokol za posredovanje podatkov in zahtevek, ki bo omogočal hitrejše in učinkovitejše posredovanje podatkov, hkrati pa bo zagotavljal varstvo osebnih podatkov žensk, vključenih v program. Pregledu literature s področja varstva osebnih podatkov, relevantne zakonodaje, sorodnih protokolov v tujini ter s področja ocenjevanja tveganja pri posredovanju podatkov je sledila izvedba polstrukturiranih intervjujev z zaposlenimi v programih ZORA, DORA in SVIT ter z zaposlenimi pri Registru raka Republike Slovenije. Sintezi pridobljenih informacij je sledila testna izdelava zahtevka in protokola ter njuna fazna evalvacija s pravnega vidika, z vidika tistih, ki podatke posredujejo, ter z vidika tistih, ki za podatke prosijo. Trajalo bo nekaj časa, da bodo uporabniki popolnoma sprejeli zahtevek. Pri tem bodo v pomoč zaposleni pri Registru ZORA, ki bodo nudili podporo in pomoč pri njegovem izpolnjevanju.

Ključne besede

Državni program ZORA;Register ZORA;zahtevek za dostop do podatkov;varstvo osebnih podatkov;

Podatki

Jezik: Slovenski jezik
Leto izida:
Tipologija: 2.09 - Magistrsko delo
Organizacija: UM FOV - Fakulteta za organizacijske vede
Založnik: [T. Firanović]
UDK: 004.6
COBISS: 86182403 Povezava se bo odprla v novem oknu
Št. ogledov: 246
Št. prenosov: 19
Ocena: 0 (0 glasov)
Metapodatki: JSON JSON-RDF JSON-LD TURTLE N-TRIPLES XML RDFA MICRODATA DC-XML DC-RDF RDF

Ostali podatki

Sekundarni jezik: Angleški jezik
Sekundarni naslov: National screening programme and registry zora data access and release protocol
Sekundarni povzetek: The advance in technology in healthcare is also seen as a rise in the number of data registries, which hold personal data of patients. This data is not only used for the means of treatment but also for prevention of diseases. Screening programmes are an important part of cancer prevention in Slovenia. Three screening programmes in Slovenia are known as ZORA, DORA and SVIT. Registry ZORA is very important for effective functioning of The National screening programme ZORA. Registry ZORA holds personal data of women, that partake in this programme. The ZORA staff is oftentimes addressed with data access requests, which are legal in their nature. The aim of this master's thesis was to create a data request form in order to make the ZORA staff's work more effective, since a lot of time is used to address this data requests. The data request form should be able to make the process of data release faster and more effective and in the same time provide the protection of the personal data of women, included in programme ZORA. A literature review of personal data protection, different laws and regulations, other protocols from abroad and models of evaluating risk for data sharing, was conducted. The literature review was followed by semi-structured interviews with the staff of DORA, SVIT, ZORA and the Cancer registry of Republic of Slovenia. The synthesis of acquired information was followed by a development of the test data request form and also of the data release protocol. Both were evaluated in phases, from legal view, by those who request the data and by those who make data access inquiries. The finished data request form was published on the web page of programme ZORA, as an online application form. The data release protocol was also published, which provides more information about how to fill out the application. Although the aim of the master's thesis was reached, more time will be needed for the applicants to fully adopt the new data request form. The ZORA staff will assist the applicants while the adoption of the data request form is still incomplete.
Sekundarne ključne besede: Upravljanje z osebnimi podatki;Programska oprema;Zdravstvo;Univerzitetna in visokošolska dela;
Vrsta dela (COBISS): Magistrsko delo/naloga
Komentar na gradivo: Univ. v Mariboru, Fak. za organizacijske vede
Strani: VIII, 67 f.
ID: 13347603