ASCO Responds to Senate Finance Committee Regarding Health Care Data Transparency

August 18, 2014

The American Society of Clinical Oncology (ASCO), in a letter to Senate Finance Committee Chair Ron Wyden (D-Ore.) and committee member Charles Grassley (R-Iowa), responded to their recommendations on enhancing the availability and utility of health care data, while strictly maintaining and protecting patient privacy.

The letter expressed ASCO’s support for data transparency and the society’s interest in working with policymakers to enhance the quality and value of the care provided to cancer patients. To that end, ASCO President Peter P. Yu, MD, FASCO, outlined some of the society’s key initiatives including the Quality Oncology Practice Initiative (QOPI) and its participation in the American Board of Internal Medicine’s “Choosing Wisely” campaign.

Acknowledging that digital health technologies are a transformative force driving innovation in cancer care, ASCO is also developing CancerLinQ, a groundbreaking health information technology (HIT) platform that aims to achieve higher-quality, higher-value cancer care with better patient outcomes by assembling and analyzing electronic patient information in a learning network. The platform will, among other things, provide real-time information, analyze data from multiple clinical sources, deliver personalized clinical support to physicians, and allowing clinicians to gain otherwise inaccessible insights through data mining and data visualization. Clinicians will also be able to access information from a massive body of de-identified data on patient care and results, in addition to identifiable information related to their own patients.

Through its letter, ASCO also made recommendations for future Medicare physician data releases and responded to specific questions raised by the Senate Finance Committee in a June 2014 letter to stakeholders, regarding which data sources to make more broadly available, how to convey the data, reforms to improve the accessibility and usability of health care data, and overcoming the barriers to using data effectively. ASCO’s many recommendations included the following:

  • Health care cost and quality data should only be made more broadly available with appropriate context, such as information about the disease, the diagnostics employed to determine the etiology and severity of the disease, the treatments used to affect the natural history of the disease (including prevention), the outcomes of treatment including cures and complications, and host factors such as comorbid conditions.
  • Data should be released for the purpose of improving patient care and enabling a learning health system. Data transmission and interoperability among disparate provider HIT systems, health information exchanges, and clinical data registries would facilitate greater quality of care across the care continuum. Furthermore, these vendors should be incentivized to adopt common data dictionaries and/or data elements to facilitate data exchange across electronic health record systems.
  • Information sharing among health care providers can reduce duplication of records and unnecessary testing for patients that travel between numerous healthcare systems over the course of their lives. Regulatory reform that enables secure data sharing and incentivizes standardized reporting would enable providers to easily access and share data (in a HIPAA-compliant manner) that applies to the delivery of patient care. Additionally, since cost data alone does not provide useful information on the quality of care, Congress should further incentivize the development of quality improvement programs that are meaningful to patients.
  • Barriers such as a general lack of interoperability stand in the way of using existing data sources more effectively. Policymakers should require and incentivize the adoption of electronic data exchange to create an environment where more interoperability can occur. Sharing data across the care continuum—among providers, payers, and patients—is the key to best utilizing data to improve clinical outcomes, coordination of care, and the efficiency of care delivery. Congress should review existing programs to ensure physicians are compensated for time and resources they spend leveraging existing data to improve the quality of the care they provide.

“ASCO remains committed to working with legislators and [the Centers for Medicare and Medicaid Services (CMS)], to establish a more helpful process for providing reimbursement information in the appropriate clinical context,” said Dr. Yu. “In return, federal entities should provide physicians with a usable way to review and correct inaccuracies in their information.”

To read the full letter, please click here.