@article{Laryea_Awittor_2017, title={Ensuring confidentiality and safety of cancer registry data in Kumasi, Ghana}, volume={9}, url={https://ojphi.org/ojs/index.php/ojphi/article/view/7714}, DOI={10.5210/ojphi.v9i1.7714}, abstractNote={<div style="left: 78.2727px; top: 278.962px; font-size: 12.3207px; font-family: sans-serif; transform: scaleX(1.0823);" data-canvas-width="55.467823232323234">Objective</div><div style="left: 91.3182px; top: 291.965px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.04052);" data-canvas-width="330.1555232323235">To discuss the implementation of confidentiality practices at the</div><div style="left: 78.2727px; top: 306.46px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00799);" data-canvas-width="124.21736868686868">Kumasi Cancer Registry.</div><div style="left: 78.2727px; top: 334.043px; font-size: 12.3207px; font-family: sans-serif; transform: scaleX(1.11884);" data-canvas-width="71.86668434343434">Introduction</div><div style="left: 91.3182px; top: 347.046px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.993495);" data-canvas-width="330.7345964646465">Cancer registration involves collecting information on patients</div><div style="left: 78.2727px; top: 361.541px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.0137);" data-canvas-width="344.7432404040404">with cancer. Population-based cancer registries in particular are</div><div style="left: 78.2727px; top: 376.036px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.02278);" data-canvas-width="342.9037588383839">useful in estimating the disease burden and to inform the institution</div><div style="left: 78.2727px; top: 390.531px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00743);" data-canvas-width="342.5427621212121">of prevention and control measures. Collecting personal information</div><div style="left: 78.2727px; top: 405.026px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.987058);" data-canvas-width="344.1543106060605">on patients with cancer requires strict adherence to principles of</div><div style="left: 78.2727px; top: 419.521px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00582);" data-canvas-width="342.3641118686869">confidentiality to ensure the safety of the collected data. Failure may</div><div style="left: 78.2727px; top: 434.016px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.960798);" data-canvas-width="343.1809747474747">have legal and medical implications. The Kumasi Cancer Registry</div><div style="left: 78.2727px; top: 448.511px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.0232);" data-canvas-width="343.02696590909085">was established as a population-based cancer Registry in 2012. The</div><div style="left: 78.2727px; top: 463.006px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.03453);" data-canvas-width="342.94811338383863">registry collects data on cases of cancer occurring among residents</div><div style="left: 78.2727px; top: 477.501px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.996815);" data-canvas-width="344.4992904040407">of the Kumasi Metropolitan area of Ghana. Issues bordering on</div><div style="left: 78.2727px; top: 491.996px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00321);" data-canvas-width="344.30092702020227">confidentiality were an integral part of the establishment of the</div><div style="left: 78.2727px; top: 506.491px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.01256);" data-canvas-width="344.6237295454549">registry. We discuss the implementation of confidentiality plans</div><div style="left: 78.2727px; top: 520.985px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00372);" data-canvas-width="324.0345959595959">during the four years of existence of the Kumasi Cancer Registry.</div><div style="left: 78.2727px; top: 548.568px; font-size: 12.3207px; font-family: sans-serif; transform: scaleX(1.07424);" data-canvas-width="50.65042676767676">Methods</div><div style="left: 91.3182px; top: 561.571px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.965778);" data-canvas-width="328.75096262626255">The registry has a designed abstraction form which is used to collect</div><div style="left: 78.2727px; top: 576.066px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00926);" data-canvas-width="342.5107282828282">data. Data sources for the Registry are all major hospitals in Kumasi</div><div style="left: 78.2727px; top: 590.561px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.984443);" data-canvas-width="341.7985914141414">providing cancer treatment services. Data sources also include private</div><div style="left: 78.2727px; top: 605.056px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.03486);" data-canvas-width="343.17604646464645">pathology laboratories and the Births and Deaths Registry. Trained</div><div style="left: 78.2727px; top: 619.551px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.04108);" data-canvas-width="342.98507550505053">research assistants collect data from the folders of patients. This is</div><div style="left: 78.2727px; top: 634.046px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.960268);" data-canvas-width="343.6799633838383">followed by coding and then entering into the Canreg 5 software.</div><div style="left: 78.2727px; top: 648.541px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.03946);" data-canvas-width="343.1600295454542">Coded and entered into the Canreg5 software for management and</div><div style="left: 78.2727px; top: 663.036px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.969282);" data-canvas-width="343.8204194444443">analysis. After data entry, the forms are filed in order of registry</div><div style="left: 78.2727px; top: 677.531px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00107);" data-canvas-width="322.26041414141395">numbers as generated by the canreg5 software for easy reference.</div><div style="left: 78.2727px; top: 705.114px; font-size: 12.3207px; font-family: sans-serif; transform: scaleX(1.08542);" data-canvas-width="44.50239393939395">Results</div><div style="left: 91.3182px; top: 718.117px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.978932);" data-canvas-width="330.60153282828276">Confidentiality of KsCR data is ensured through the following</div><div style="left: 78.2727px; top: 732.612px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.02294);" data-canvas-width="342.940720959596">measures. The signing of a confidentiality agreement by all registry</div><div style="left: 78.2727px; top: 747.107px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.03468);" data-canvas-width="343.1169070707069">staff. The confidentiality agreement spells out terms for the release</div><div style="left: 78.2727px; top: 761.602px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.968304);" data-canvas-width="344.0705297979801">of data to third parties in particular but even staff of the various</div><div style="left: 78.2727px; top: 776.097px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.992872);" data-canvas-width="342.0277565656565">facilities. The agreement also spells out the consequences of a breach</div><div style="left: 78.2727px; top: 790.592px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.01477);" data-canvas-width="342.6536484848484">of any of the clauses. No direct contact is made with patients during</div><div style="left: 78.2727px; top: 805.086px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.02176);" data-canvas-width="342.90252676767693">the process of abstraction of data by registrars. The data abstraction</div><div style="left: 78.2727px; top: 819.581px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00359);" data-canvas-width="342.3062045454544">forms are kept in a secured safe in the registry office. The computers</div><div style="left: 78.2727px; top: 834.076px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.94899);" data-canvas-width="343.2179368686868">that house the registry data are password enabled and are changed</div><div style="left: 78.2727px; top: 848.571px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.97156);" data-canvas-width="343.62452020202005">on a regular basis to ensure security. The Canreg5 software used</div><div style="left: 78.2727px; top: 863.066px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.992588);" data-canvas-width="344.03110353535345">for electronic data management also has individual profiles with</div><div style="left: 78.2727px; top: 877.561px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.979873);" data-canvas-width="343.9842848484848">passwords for all registrars and supervisors. The scope of access</div><div style="left: 78.2727px; top: 892.056px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.997155);" data-canvas-width="344.3009270202022">to Canreg data is limited by the profile status of the respective</div><div style="left: 78.2727px; top: 906.551px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.981997);" data-canvas-width="343.84629292929304">staff members. Supervisors have full access to all data including</div><div style="left: 78.2727px; top: 921.046px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00511);" data-canvas-width="342.44173232323215">summarized reports. Registrars have limited access mostly restricted</div><div style="left: 78.2727px; top: 935.541px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.989341);" data-canvas-width="341.85033838383845">to data entry. Access to the registry office is restricted to registry staff</div><div style="left: 78.2727px; top: 950.036px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00692);" data-canvas-width="342.40353813131316">and other personnel authorized by the Registry Manager or Director.</div><div style="left: 78.2727px; top: 964.531px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00952);" data-canvas-width="342.58095631313125">An established Registry Advisory Board is responsible for assessing</div><div style="left: 78.2727px; top: 979.026px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.02731);" data-canvas-width="342.89759848484823">requests and approval of data from the registry. Where files have to</div><div style="left: 78.2727px; top: 993.521px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.990852);" data-canvas-width="341.8934608585859">be sent electronically, they are password protected and sent in several</div><div style="left: 78.2727px; top: 1008.02px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00132);" data-canvas-width="118.38967424242426">parts in separate emails.</div><div style="left: 443.545px; top: 278.962px; font-size: 12.3207px; font-family: sans-serif; transform: scaleX(1.10408);" data-canvas-width="73.93656313131314">Conclusions</div><div style="left: 456.591px; top: 291.965px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.0033);" data-canvas-width="331.2569944444444">Despite the potential challenges to maintaining confidentiality</div><div style="left: 443.545px; top: 306.46px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.949909);" data-canvas-width="343.2179368686867">of data in developing outcries, evidence from four years of cancer</div><div style="left: 443.545px; top: 320.955px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.02693);" data-canvas-width="342.8754212121212">data management in Kumasi suggests stringent measure can ensure</div><div style="left: 443.545px; top: 335.45px; font-size: 12.3207px; font-family: serif; transform: scaleX(0.986667);" data-canvas-width="341.78134242424244">confidentiality. The use of multiple measures to ensure confidentiality</div><div style="left: 443.545px; top: 349.945px; font-size: 12.3207px; font-family: serif; transform: scaleX(1.00132);" data-canvas-width="218.65558838383845">is essential in surveillance data management</div>}, number={1}, journal={Online Journal of Public Health Informatics}, author={Laryea, Dennis O. and Awittor, Fred K.}, year={2017}, month={May} }