On January 30 the Law Library will host a symposium on the legal issues connected with big data collection, usage, and preservation. The library is blogging about the topic of the conference in anticipation of the event. Today we highlight the work of one of the conference presenters, Carole Roan Gresenz, an economist and professor at the Georgetown School of Nursing & Health Studies.
Dr. Gresenz recently co-authored a report which used a range of data sets to assess cancer related outcomes in the District of Columbia. Entitled “Monitoring Cancer Outcomes Across the Continuum,” her work synthesizes and analyzes available data to document the capacity of the D.C. health care delivery system to provide cancer prevention and treatment services to those who are publicly insured.
The report also highlights gaps in data availability that limit understanding of cancer outcomes among District residents. On Jan. 30 she will talk about data challenges for assessing health and health care in local communities and what the future of big data holds for better understanding and monitoring community health.
An excerpt from pages vii – viii of Professor Gresenz’s report:
Perhaps as notable and important as the key findings summarized above are the gaps in available information regarding key elements of the cancer continuum. In what follows, we highlight important opportunities for data collection and analysis, noting the scarcity of information for describing outcomes for certain population subgroups, as well as current limitations of data for tracking historical and future trends in outcomes.
(1) More needs to be known about cancer treatment patterns and quality in the District.
More comprehensive data on treatment is needed to assess (a) the full range of treatment received by patients, (b) the degree to which treatment is in accordance with standards for quality of cancer care, and (c) variation in treatment patterns over time and across subgroups of interest.
(2) Regular, continued monitoring and timely reporting of cancer-related outcomes among District residents are essential, as is assuring validity and comprehensiveness of cancer registry data in the District.
Routine, consistent, and timely reporting of cancer-related outcomes in the District is essential to guide the efforts of government and nongovernmental entities working to reduce the burden of cancer in the District.
(3) Supplementary data would provide a more robust understanding of potential barriers to cancer screening.
Self-reports of cancer screening are subject to recall bias, as survey respondents, especially those who are black and Hispanic, tend to overreport screening (Rauscher, Johnson, et al., 2008). Therefore, it would be useful to supplement BRFSS data by exploring rates of screening developed from other data sources, such as claims data, and gleaning information from patient navigators in the Citywide Patient Navigation Network to identify barriers to screening among vulnerable populations.
(4) Opportunities exist to learn more about patient experiences across the continuum.
Although measuring patients’ experiences with cancer care is a critical component of overall quality assessment, to our knowledge, no systematically collected surveys are conducted with cancer patients in the District regarding their experiences with cancer care at any stage of the continuum. Administration of surveys of experiences with cancer treatment, survivorship, and end-of-life care could inform quality improvement or consumer choices between cancer treatment facilities.
(5) More information is needed on awareness and knowledge of cancer prevention and control among District residents.
Little empirical data are available regarding the degree to which District residents—overall, or by relevant geographic or sociodemographic subgroups—are aware of cancer risks, protective factors, or the benefits of early detection. The National Cancer Institute’s Health Information National Trends Survey surveys a nationally representative sample of American adults biennially regarding cancer awareness and communication and may present opportunities for identification of gaps in awareness and knowledge in the District.
(6) More attention needs to be given to understanding the regional burden of disease, patient flows across geographic borders, and regional capacity for cancer care.
Many cancers treated in the District are among non-District residents, suggesting the need for exploration of the key drivers of care-seeking across District boundaries and an assessment of health care capacity that encompasses the District and surrounding counties.