ABSTRACT
Due to the high incidence of deaths from breast cancer, high cost of treatment and limited resources, the need to formulate and implement effective programs in reducing the burden of disease is obvious. Care, control and creation of cancer information system having an infrastructure from collection of minimum data sets [MDS] are the top priorities of research in Iran's Ministry of Health. This is an applied descriptive research with comparative approach implemented in 2010. MDS for breast cancer on selected countries were searched and reviewed and proposed model based on the country's need was designed. Research data were implemented in 2 stages; assessment of MDS on selected countries and the validation of the proposed model through several meetings that has been carried out by the Undersecretary for Research and Technology and several oncologists and pathologists. The MDS is composed of 11 parameters in the form of fields in closed structured arrangements with consideration to coding responses. These parameters include: hospital data, demography, referral, physical examination and investigation, diagnostic information, pathology, treatment, palliative care, completion of primary treatment, clinical trials and follow-up. This form is available for use in the cancer registry database. MDS provides an opportunity to strengthen communication between performed researches and research results for the improvement of programs, policies and strategies and provides positive effect on equality in the health system. Although the stages of creating the MDS for breast cancer has been successful, but many challenges has been met until its completion
ABSTRACT
This study defines necessary data elements required for the research information system in the domain of health, and its level of accountability to national health research indicators from the experts' perspective is being explored. This qualitative study was conducted based on comparative approach using the focus group method. Data were collected through 6 semi-structured group discussions held at the Undersecretary for Research and Technology, Ministry of Health and Medical Education, Tehran, Iran. For this study, 48 researchers were selected for the group discussions. All interviews and group discussions were recorded and transcribed. The Data analysis was performed simultaneously using Strauss and Corbin method. Based on content analysis, the necessary data elements identified for the National Health Research Information System designed for all databases were the following: organizations, researchers, journals, articles, research projects and dissertations. Also, extracted from the focus group discussion were three main themes regarding data elements of these databases for the National Health Research Information System: 1] essential elements for each database 2] the system's data elements accountability to the national indicators in the domain of health research and 3] recommendations in the direction of optimizing the data. The results obtained from this study can serve as a valuable source in designing research information system in the domain of health within the country and in the region as well