First Faculty Advisor
Second Faculty Advisor
data privacy; data access; medical research; interoperability; health care
The purpose of this research is to understand the current relationship between data access and data privacy in the health care industry and attempt to find a way that important health care research can still be conducted amidst HIPAA regulations. There is a lack of extensive research on the impacts of data privacy on health care research due to access regulations, so a survey was created regarding current data processes and recommendations for creating a healthier relationship between privacy and access for research. It was distributed to anyone in health care, analytics, or research to get a variety of perspectives. Tweets were also collected based on medical research and privacy regulation key words and analyzed to further understand the sentiment of these topics within the public view, especially in regard to research. It was found that a well-regulated process to create a partnership between medical professionals and researchers was a viable solution to work with privacy laws, as well as potentially creating a cross-functional team of patients and experts across different involved fields that discusses needs and obstacles in order to overcome them. The data also displayed that recommendation for de-identifying patient medical records for use in research was also a potential contributor to the solution. Analysis also led to the discussion of lacking interoperability in health care and the idea that data quality and structure poses a significant problem for the advancements of medical research, with a recommendation for more interoperability among health care databases to become a priority. Though few are discussing this topic, most analysts, researchers, and medical professionals who participated in the survey agree that the relationship between HIPAA and medical research needs to be discussed and has the potential to lead to legitimate access. Finally, finding a way to get the necessary data to researchers would help to enhance medical treatments and gain a better understanding of patient experiences in order to improve them.