Ensuring confidentiality and safety of cancer registry data in Kumasi, Ghana

ObjectiveTo discuss the implementation of confidentiality practices at theKumasi Cancer Registry.IntroductionCancer registration involves collecting information on patientswith cancer. Population-based cancer registries in particular areuseful in estimating the disease burden and to inform the institutionof prevention and control measures. Collecting personal informationon patients with cancer requires strict adherence to principles ofconfidentiality to ensure the safety of the collected data. Failure mayhave legal and medical implications. The Kumasi Cancer Registrywas established as a population-based cancer Registry in 2012. Theregistry collects data on cases of cancer occurring among residentsof the Kumasi Metropolitan area of Ghana. Issues bordering onconfidentiality were an integral part of the establishment of theregistry. We discuss the implementation of confidentiality plansduring the four years of existence of the Kumasi Cancer Registry.MethodsThe registry has a designed abstraction form which is used to collectdata. Data sources for the Registry are all major hospitals in Kumasiproviding cancer treatment services. Data sources also include privatepathology laboratories and the Births and Deaths Registry. Trainedresearch assistants collect data from the folders of patients. This isfollowed by coding and then entering into the Canreg 5 software.Coded and entered into the Canreg5 software for management andanalysis. After data entry, the forms are filed in order of registrynumbers as generated by the canreg5 software for easy reference.ResultsConfidentiality of KsCR data is ensured through the followingmeasures. The signing of a confidentiality agreement by all registrystaff. The confidentiality agreement spells out terms for the releaseof data to third parties in particular but even staff of the variousfacilities. The agreement also spells out the consequences of a breachof any of the clauses. No direct contact is made with patients duringthe process of abstraction of data by registrars. The data abstractionforms are kept in a secured safe in the registry office. The computersthat house the registry data are password enabled and are changedon a regular basis to ensure security. The Canreg5 software usedfor electronic data management also has individual profiles withpasswords for all registrars and supervisors. The scope of accessto Canreg data is limited by the profile status of the respectivestaff members. Supervisors have full access to all data includingsummarized reports. Registrars have limited access mostly restrictedto data entry. Access to the registry office is restricted to registry staffand other personnel authorized by the Registry Manager or Director.An established Registry Advisory Board is responsible for assessingrequests and approval of data from the registry. Where files have tobe sent electronically, they are password protected and sent in severalparts in separate emails.ConclusionsDespite the potential challenges to maintaining confidentialityof data in developing outcries, evidence from four years of cancerdata management in Kumasi suggests stringent measure can ensureconfidentiality. The use of multiple measures to ensure confidentialityis essential in surveillance data managemen

Ensuring confidentiality and safety of cancer registry data in Kumasi, Ghana

ObjectiveTo discuss the implementation of confidentiality practices at theKumasi Cancer Registry.IntroductionCancer registration involves collecting information on patientswith cancer. Population-based cancer registries in particular areuseful in estimating the disease burden and to inform the institutionof prevention and control measures. Collecting personal informationon patients with cancer requires strict adherence to principles ofconfidentiality to ensure the safety of the collected data. Failure mayhave legal and medical implications. The Kumasi Cancer Registrywas established as a population-based cancer Registry in 2012. Theregistry collects data on cases of cancer occurring among residentsof the Kumasi Metropolitan area of Ghana. Issues bordering onconfidentiality were an integral part of the establishment of theregistry. We discuss the implementation of confidentiality plansduring the four years of existence of the Kumasi Cancer Registry.MethodsThe registry has a designed abstraction form which is used to collectdata. Data sources for the Registry are all major hospitals in Kumasiproviding cancer treatment services. Data sources also include privatepathology laboratories and the Births and Deaths Registry. Trainedresearch assistants collect data from the folders of patients. This isfollowed by coding and then entering into the Canreg 5 software.Coded and entered into the Canreg5 software for management andanalysis. After data entry, the forms are filed in order of registrynumbers as generated by the canreg5 software for easy reference.ResultsConfidentiality of KsCR data is ensured through the followingmeasures. The signing of a confidentiality agreement by all registrystaff. The confidentiality agreement spells out terms for the releaseof data to third parties in particular but even staff of the variousfacilities. The agreement also spells out the consequences of a breachof any of the clauses. No direct contact is made with patients duringthe process of abstraction of data by registrars. The data abstractionforms are kept in a secured safe in the registry office. The computersthat house the registry data are password enabled and are changedon a regular basis to ensure security. The Canreg5 software usedfor electronic data management also has individual profiles withpasswords for all registrars and supervisors. The scope of accessto Canreg data is limited by the profile status of the respectivestaff members. Supervisors have full access to all data includingsummarized reports. Registrars have limited access mostly restrictedto data entry. Access to the registry office is restricted to registry staffand other personnel authorized by the Registry Manager or Director.An established Registry Advisory Board is responsible for assessingrequests and approval of data from the registry. Where files have tobe sent electronically, they are password protected and sent in severalparts in separate emails.ConclusionsDespite the potential challenges to maintaining confidentialityof data in developing outcries, evidence from four years of cancerdata management in Kumasi suggests stringent measure can ensureconfidentiality. The use of multiple measures to ensure confidentialityis essential in surveillance data managemen

Three Years of Population-Based Cancer Registration in Kumasi: Providing Evidence for Population-Based Cancer Surveillance in Ghana

Population-based cancer registration is not common practice in developing countries. Ghana's first PBCR, the Kumasi Cancer Registry was established in 2012. We review data from the registry from 2012 to 2014. Females accounted for the majority (64.2%) of the 1,078 cases of cancer were recorded. Breast (35.1%), Cervix (23.7%), Ovary (7.9%), Liver (3.8%) and Endometrium (3.2%) were the top five cancers among females. Among males, the commonest cancers were Liver (21.8%), Prostate (17.9%), Stomach (4.1%), Lung (3.4%) and Bone marrow (2.9%). Histology was the basis of diagnosis for 58.7%. There is the need to establish more such registries in Ghana

Three Years of Population-Based Cancer Registration in Kumasi: Providing Evidence for Population-Based Cancer Surveillance in Ghana

Population-based cancer registration is not common practice in developing countries. Ghana's first PBCR, the Kumasi Cancer Registry was established in 2012. We review data from the registry from 2012 to 2014. Females accounted for the majority (64.2%) of the 1,078 cases of cancer were recorded. Breast (35.1%), Cervix (23.7%), Ovary (7.9%), Liver (3.8%) and Endometrium (3.2%) were the top five cancers among females. Among males, the commonest cancers were Liver (21.8%), Prostate (17.9%), Stomach (4.1%), Lung (3.4%) and Bone marrow (2.9%). Histology was the basis of diagnosis for 58.7%. There is the need to establish more such registries in Ghana

Follow-up of Breast Cancer Patients in Ghana: Challenges to Community-based Surveillance

Cancer-related deaths have been projected to increase in sub-Saharan Africa. Cancer control programmes require good quality data in order to provide information for planning and implementing cancer control and prevention activities. Cancer registration and follow-up of cancer cases to estimate survival are useful tools in cancer control programmes. We followed up 136 cases of breast cancer diagnosed from the year 2006 to 2008. The majority of cases (62.5%) could not be reached either by phone or at the residential address indicated in the folders. We recommend a strengthened system of demographic information collection on cases for effective surveillance

Heterogeneity in head and neck cancer incidence among black populations from Africa, the Caribbean and the USA: Analysis of cancer registry data by the AC3

International audienceBackground: Africa and the Caribbean are projected to have greater increases in Head and neck cancer (HNC) burden in comparison to North America and Europe. The knowledge needed to reinforce prevention in these populations is limited. We compared for the first time, incidence rates of HNC in black populations from African, the Caribbean and USA. Methods: Annual age-standardized incidence rates (IR) and 95% confidence intervals (95%CI) per 100,000 were calculated for 2013-2015 using population-based cancer registry data for 14,911 HNC cases from the Caribbean (Barbados, Guadeloupe, Trinidad and Tobago, N = 443), Africa (Kenya, Nigeria, N = 772) and the United States (SEER, Florida, N = 13,696). We compared rates by sub-sites and sex among countries using data from registries with high quality and completeness. Results: In 2013-2015, compared to other countries, HNC incidence was highest among SEER states (IR: 18.2, 95%CI = 17.6-18.8) among men, and highest in Kenya (IR: 7.5, 95%CI = 6.3-8.7) among women. Nasopharyngeal cancer IR was higher in Kenya for men (IR: 3.1, 95%CI = 2.5-3.7) and women (IR: 1.5, 95% CI = 1.0-1.9). Female oral cavity cancer was also notably higher in Kenya (IR = 3.9, 95%CI = 3.0-4.9). Blacks from SEER states had higher incidence of laryngeal cancer (IR: 5.5, 95%CI = 5.2-5.8) compared to other countries and even Florida blacks (IR: 4.4, 95%CI = 3.9-5.0). Conclusion: We found heterogeneity in IRs for HNC among these diverse black populations; notably, Kenya which had distinctively higher incidence of nasopharyngeal and female oral cavity cancer. Targeted etiological investigations are warranted considering the low consumption of tobacco and alcohol among Kenyan women. Overall, our findings suggest that behavioral and environmental factors are more important determinants of HNC than race