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Top1. Introduction
A cancer diagnosis can devastate a patient’s life physically, emotionally, and if the patient is not properly insured, financially. Once diagnosed with cancer, the patient and his/her family typically begin a planning process of treatment that may lead, for all intent and purpose, to a cure. At the initial planning stage, however, little thought is given to the myriad activities that take place prior to, and concurrent with, the patient’s treatment journey. Accordingly, a key aspect of cancer care, which may often be overlooked, is the role of cancer research; for instance, the patient will likely not understand the role that previous research has played in his/her treatment plan. Also, most patients are not understanding that, if they are admitted into a large cancer treatment center, especially one specializes only in cancer care, they will most likely become a participant in one or more studies that are currently underway. Indeed, one of the many forms they will sign to initiate their treatment program will be a release that allows the faculty and staff at the facility to collect and analyze data pertaining to the patient’s disease and/or treatment progression.
Broadly, data used in health research come from multiple sources, but one of the most potent sources is the Electronic Medical Record (EMR). As a means to improve the quality, safety, and efficacy of the health care process, EMR development and implementation was mandated by Title XIII of the American Recovery and Reinvestment Act (ARRA) of 2009 (United States Congress, 2009). As a side benefit, EMR also created a much more efficient and effective tool for health researchers to extract data for their studies. Even so, cancer research requires data that are not often readily available in the EMRs. One challenge is the nature of cancer care itself - it is not atypical for the diagnosis of cancer, for example, to occur in one institution, the labs to be done in another, and the treatment to occur in a third. While all of these facilities will have EMRs, it is conceivable that the different systems will contain data only on the patient’s encounter with the specific institution. No single EMR will contain enough data to track the progress of the cancer, its histology and staging, and whether the cancer is a new or recurrent tumor. Thus, while useful for research to inform decisions relating to insurance coverage and costs of treatment, these data are not suitable for the types of knowledge needed to develop effective means of fighting the patient-specific cancer disease.
This paper highlights key aspects of the data collection, organizing, and managing processes within the cancer registry system that sometime lead to inconsistencies in the data held within the databases. Such inconsistencies are a threat to the validity of the cancer research process; accordingly, the paper presents a mechanism, using blockchain technology, to identify these inconsistencies when they occur and to call attention to these inconsistencies for those wishing to use the data for any type of cancer research. As documented in the literature, blockchain is being applied to a growing number of healthcare use cases owing to its ability to protect the integrity of the data. When data are used to make life or death decisions, or to perform research that results in the development of life-saving therapies such as those developed by cancer researchers, the data consumer must be able to trust that the data are accurate and valid. This means having a tool to compare the data being used with its original state to check for tampering or other changes – a requirement that characterizes the blockchain technology. As such, this paper seeks to address the following broader research questions:
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Can blockchain data management processes be used to help manage the data discrepancies between the various levels of cancer registries?
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What improvements can the use of blockchain-based data storage and management brings about in the cancer registry process?
The rest of this paper will be organized as follows. Section 2 overviews the cancer registry processes, blockchain technology, and the literature that supports the current research. Section 3 details the study methodology and the application of that methodology in cancer registry system design while section 4 presents and highlights important results of the study. Finally, section 5 closes the paper with some concluding remarks while pointing out certain limitations of the present study and offers directions for future research.