By now, most of us are familiar with recycling. Items with reclaimable value are collected; then base materials are salvaged to create new products—often of lesser quality.
Fewer people are familiar with the term upcycling, a form of recycling that involves reconceiving, and sometimes adding to, existing items with the goal of giving them a different purpose and higher value. Though the term may be unfamiliar, the concept is old. A hundred years ago, farm families upcycled feed sacks into dresses, and old doors into furniture. The fleece jackets we now see everywhere, often made from reclaimed plastic bottles, are a modern example of upcycling.
In the world of health care data, too, opportunities exist to upcycle by adding to and repurposing existing information. It makes good sense to leverage investments in data collection, many of which have already been made for other reasons, such as public health surveillance and provider billing: doing so reduces data collection and cost burdens. The California HealthCare Foundation, based in Oakland, is actively pursuing data-upcycling initiatives as part of its mission to make useful information about health care quality publicly available. Two such efforts are highlighted below.
Maternity Care Data
More than 500,000 California women give birth each year; yet little information exists to guide decisions about where to seek high-quality maternity care. Providers themselves often lack information about their own performance. To help fill this gap, the California Maternal Data Center was launched in 2012 (it is cofunded by the California HealthCare Foundation and the Centers for Disease Control and Prevention and operated by the California Maternal Quality Care Collaborative). By repurposing data that hospitals and the state government have long collected, it provides metrics on the quality of maternity care. The California Maternal Data Center links birth certificate data (for example, birth weight, delivering provider) with information included in patient discharge data (for example, diagnostic and procedure codes related to the birth) that hospitals are already required to submit to the state.
With this combination of data, the center is able to produce robust measures, such as rates of cesarean sections, episiotomies, and vaginal birth after C-section, on all California hospitals providing maternity care. With a small amount of additional work, hospitals can voluntarily submit additional data elements from targeted medical chart reviews (that is, reviews of a subset of charts identified by the California Maternal Data Center to be most relevant) to generate other measures, such as elective delivery before thirty-nine weeks. Many participating hospitals are using the center’s data to facilitate quality improvement, and plans are under way to support public reporting at the hospital and physician-practice levels.
Cancer Care Data
In 2009 some 147,000 new cancer cases were diagnosed in California, and 55,000 people died of the disease. But, as with maternity care, there is little information about cancer care quality.
California—like all fifty states—has a mandated cancer registry requiring providers to submit standardized information on every new cancer diagnosis. State cancer registries were designed as public health surveillance systems and typically contain reliable information on who is diagnosed, cancer type, stage at diagnosis, and who died. Also included are some details on the first line of treatment.
However, although this nationally standardized infrastructure exists for cancer, registry data are not typically available for public reporting on specific providers. There is clear potential to upcycle state cancer registry data, particularly if they could be made more valuable by linking them with other data to gain a more complete picture of care quality, as advocated in a recent Institute of Medicine report.
In 2010 the California HealthCare Foundation launched an initiative focused on improving cancer care transparency in California. To date, the foundation has funded exploratory efforts; several aim to use the California Cancer Registry data for the following:
* Technical work required to publicly report the number of cancer procedures performed, using state hospital discharge and cancer registry data.
* A feasibility assessment of measuring cancer care quality at the medical-group level in California, using cancer registry and commercial claims data.
* A workgroup to examine the barriers and opportunities for using the registry to measure and improve cancer care quality.
Challenges to a “Greener” Data World
Real challenges exist in expanding upcycling for transparency purposes in health care:
* Restrictions on existing data sources: Many proprietary sources, notably registries operated by specialty societies and health care delivery systems, share data on a limited basis or not at all. In many cases, the data collected were envisioned for internal quality improvement only. Releasing them is likely to meet with resistance from providers who may be collecting the data with their own resources, had not agreed to participate in public reporting initiatives when they started these efforts, and/or may have other valid technical concerns (for example, about risk-adjustment methods or sample size per provider).
* Operational issues: Integrating data across diverse sources is difficult, and unique patient identifiers may be required (to correctly link patient data from different databases) but not readily available due to Health Insurance Portability and Accountability Act (HIPAA) or other privacy concerns.
* Collaboration for consumer benefit is needed: To be effective, measurement experts and consumers need to work together to determine what existing data could be useful from the consumer perspective, versus the more traditional perspectives of those engaged in quality improvement, public health surveillance, or regulatory affairs. It is important to not fall prey to letting the “data drive the measures.”
To support consumer decision making, all stakeholders need to work together to rethink the use and reuse of existing data. These stakeholders include consumers, providers, payers, and policy makers. The expectation of public data release should be built into new data collection efforts, especially initiatives spurred by the Affordable Care Act (ACA). The Centers for Medicare and Medicaid Services’s (CMS’s) leadership in “liberating” data is critical, given the agency’s role as the nation’s dominant payer and its reach to virtually all providers. Payers, especially, should encourage registry participation and public reporting.
An important step is CMS’s efforts to allow Medicare providers to meet Physician Quality Reporting System requirements by reporting data to clinical registries. The Physician Quality Reporting System is “a reporting program that uses a combination of incentive payments and payment adjustments to promote reporting of quality information by eligible professionals,” according to CMS.
While assuring appropriate safeguards for patient privacy, all parties should demand that data collected with taxpayer funds be made available to organizations with experience in public reporting. States that operate all-payer claims databases are particularly well positioned to leverage claims data with other sources, such as cancer registry data.
In these and likely other ways, data could be better used, reused, and upcycled—making the data world “greener” and helping to inform health care decisions in the process.
The author thanks Jill Yegian and Pam Dardess for their comments on earlier drafts of this piece.