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Prioritizing the value of clinical data

May 19, 2023
Health IT
Victor Wang
By Victor Wang

Clinical trials have long been considered an integral component of developing innovative treatments. However, clinical trials continue to struggle to gain representative patient data; only 5% of American adults have ever participated in a clinical trial, and low accrual often contributes to under enrollment or termination of many trials. Participation tends to be unrepresentative of the general U.S. population in addition, leading to a lack of diversity that can negatively impact patient outcomes. As a result, real world data (RWD) has risen in the industry as an innovative alternative. RWD, or data extracted from sources such as patient medical records or health information, has proven to provide a powerful means of conducting clinical research and influencing patient care, particularly in difficult to find patient populations. Yet, many hospitals and health systems still do not participate in these research efforts or effectively manage clinical data to unlock its ultimate value.

One recent survey of professionals holding managerial, executive, or other leadership roles at hospitals and health systems throughout the United States found that over half of respondents noted using real world data in clinical research at their facility as a top priority. This result demonstrates that healthcare professionals understand the value of clinical data in making impactful changes in the health care industry. Yet only 32% of respondents shared that their facility or health system was actively sharing real world data to support clinical research. This is despite 59% of respondents sharing that, from their perspective, patients are either very or somewhat comfortable with the idea of their de-identified data being shared for clinical research. However, significant barriers are precluding hospitals and health systems from sharing RWD for clinical research.
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According to the survey, 65% of respondents attributed a lack of resources as a reason preventing their facility from currently using and/or sharing real world data with other organizations. While a shortage of resources has been an ongoing challenge in the healthcare industry, a deficit of healthcare professionals to capture and interpret clinical data can have considerable implications. By taking action to prevent burnout among staff, leveraging new technology and automation, and even partnering with professional third parties, the clinical data management process can be both streamlined and optimized for the betterment of clinical research. One potential first step for hospitals may be to conduct an assessment to understand existing data efforts across quality improvement, registry participation, and research efforts to understand existing data and efficiencies to gain with minimal new investment. Many hospitals have found that this enterprise data strategy can actually support improved funding of data initiatives from external research partnerships.

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