The need for cancer transparency

Just in the course of today’s media posts I saw articles that discussed using genetically modified lettuce to replace chemotherapy and another article on the importance of tracking incidents of cancer.  These articles got me to thinking about a recent paper I completed on a notional cancer transparency portal.  The Transparency Portal I envisioned in this paper provides a mechanism for cancer research and treatment centers to become more transparent in their use and publication of cancer data.  When fully implemented a Transparency Portal can enable a cancer research center or provider to publish cancer-related data in an open and accessible way. A recent AMIA panel charged with developing a national framework for the use of secondary (e.g., use of data outside of the facility) use of health data has several relevant recommendations.  The panel evaluated organizations currently engaged in publishing health data. Upon reviewing the current landscape the panel determined that organizations should be aware of and plan for the publishing of secondary health data(Safran, Bloomrosen, Hammond, Labkoff, Markel-Fox, Tang, et al., 2007). The first concept the panel identified centered around the recognition that health data is becoming widely (Safran, Bloomrosen, Hammond, Labkoff, Markel-Fox, Tang, et al., 2007). The panel found that the use of secondary health data is widespread and should addressed by any organization engaged in the health ecosystem. The panel also found that many potential users of published health data are unaware that the data even exists (Safran, Bloomrosen, Hammond, Labkoff, Markel-Fox, Tang, et al., 2007). The panel went on to recommend that organizations take care to promote properly and educate the public on the availability of this data (Safran, Bloomrosen, Hammond, Labkoff, Markel-Fox, Tang, et al., 2007). In another recommendation, the panel suggested that the access to secondary health data has become a national imperative (Safran, Bloomrosen, Hammond, Labkoff, Markel-Fox, Tanc, et al., 2007). From these recommendations, we can draw the conclusion that making our data available in the way proposed in this paper not only is beneficial to the cancer provider or researcher but also is also beneficial to our entire health ecosystem.

The Transparency Portal is necessary to help cancer researchers and providers improve their reputation and research productivity evaluations in two ways. Through a Transparency Portal the organizations will begin to publish grants, clinical trials, and (de-identified) patient surveys. This data (when published) will help improve reputations by combating the perception that the Hospital is only focused on generating revenue and is not interested in conducting research that improves the health ecosystem. There is, unfortunately, a perception in the marketplace that Hospitals engage with a pure focus on revenue at the expense of driving up costs (Relman, 2013). Through the Transparency Portal, organizations will be able to demonstrate how they spend their precious resources in support of their mission and how that mission ultimately benefits the entire health ecosystem.

If you are interested in the full version of this paper email me at

I will be posting additional portions in future blog posts.

A student at the University of Illinois at Chicago

As a graduate student in the University of Illinois at Chicago’s health informatics program I thought I would start a discussion that gives you my perception on this program and insights into classes that I’ve taken.  As I publish my insights into the program I encourage you to comment and add your own insights.  As an open-data evangelist, I believe in transparency and therefore I think it is critical to share information about this program.

During the Spring 2015 semester, I completed two classes, BHIS 520 Health Information Systems Analysis and Design and BHIS 530 Topics in Health Informatics. In the days to follow I will be publishing my feelings and observations on both of these classes.