The Patient-Centered Outcomes Research Institute (PCORI) this week issued an update to the White House outlining progress made by its National Patient-Centered Clinical Research Network (PCORnet) toward its commitments to the Administration’s “Moonshot” initiative to accelerate cancer research. As the nation’s most innovative and robust patient-centered clinical research network, PCORnet offers cancer researchers a wealth of real-world insights to address unmet research needs and reduce disparities in cancer care and outcomes. PCORnet has experienced great momentum over the past several weeks, which is reflected in notable progress made toward its commitments pledged to White House Cancer Moonshot.
PCORnet’s first commitment is to enhance its highly representative national clinical research network to allow large-scale research, including cancer research, to be conducted with greater quality and efficiency.
In the 12 weeks since first pledging its Moonshot commitments, PCORnet has already grown its number of patients with a demographic record from 110 million to 145 million, substantially enriching its data pool to support observational studies as well as clinical trials. To ready the network for research, PCORnet’s developers are continuing to characterize its available data and to enhance quality. The team is also working with its partners to examine the data, explore questionable patterns, flag missing data, and determine its utility to answer specific research questions.
PCORnet’s second commitment is to create data tables that include descriptive characteristics of patient cohorts treated for the most common types of cancer (including breast, colorectal, prostate, lung, and melanoma) within PCORnet’s 130 healthcare systems.
This is a massive undertaking that requires a stepwise process, with the first step being to organize all of PCORnet’s available data into a standard structure called the Common Data Model (CDM) version 3.0. This activity is well underway, and the “DataMarts,” or repositories of structured data from PCORnet’s healthcare systems, have made meaningful progress toward transforming their electronic health records into the CDM to ready them for research use. In fact, 70 percent of PCORnet’s DataMarts have now met the technical criteria for structure in the CDM and have signed PCORnet’s data-sharing agreement, with the remaining DataMarts expected to follow suit within the next six months. With these data in a standard structure, PCORnet is actively building a “Table 1” to summarize the demographics of its population – including sex, race, age, and 10 conditions of interest – and to answer research questions.
Progress toward this commitment has also contributed to the arrival at an exciting milestone: PCORnet’s very first research query, known as the “weight cohort research query,” was sent on July 11, 2016 and results are expected back in August, 2016. The results of this query will provide detailed weight information across PCORnet’s network and inform its obesity demonstration projects. With PCORnet’s data nearly characterized and its first research queries already in motion to test the strength and readiness of the network, the team will soon be in a position to produce descriptive tables of patient cohorts with the common cancers mentioned above.
PCORnet’s final commitment is to build a Cancer Collaborative Research Group (CRG) affiliated with PCORnet that brings together teams of patients, clinicians, and investigators to 1) identify and prioritize our nation’s top cancer research questions; 2) develop approaches for using real-world electronic data to address unmet research needs in prevention, diagnosis, and treatment of cancer; and 3) reduce disparities in cancer care and outcomes.
PCORnet’s efforts to this commitment are well underway, with the details of its Cancer CRG concept submitted to PCORI’s executive committee on July 15, 2016 and the notice of interest process initiated. A PCORnet Cancer CRG Planning Committee has also been established. This committee is led by patients, clinicians and investigators from our Greater Plains Collaborative (GPC) Clinical Data Research Network (CDRN) focused on breast cancer, Kaiser Permanente & Strategic Partners Patient Outcomes Research to Advance Learning (PORTAL) CDRN focused on colorectal cancer, and the American BRCA Outcomes and Utilization of Testing (ABOUT) Patient-Powered Research Network (PPRN) focused on hereditary breast and ovarian cancer.
One of the noted primary objectives of the proposed Cancer CRG will be to rapidly enhance the current PCORnet CDM by including key cancer-specific data tables and structures supportive of the Administration’s Cancer Moonshot, including, but not limited to, tumor registry, cancer systemic therapy, germline mutations, and molecular marker tables. In addition, breast and colorectal cancer patients who were identified from electronic health records and merged registry data have already been surveyed to collect patient-reported data. This will be valuable when considering what cancer-specific data, including patient-reported data, should be added to the CDM.
To further solidify the Cancer CRG and its remit, the networks are currently in collaboration to finalize their proposal in preparation for PCORnet’s October 31, 2016 CRG application deadline. The final CRG recommendations will be presented to PCORI’s executive committee in November 2016 and in early December 2016, it is expected that the PCORnet Council to vote to approve and fund the Cancer CRG.
PCORnet will continue to pursue its three Moonshot commitments enthusiastically in the months ahead, with progress reports planned on a quarterly basis in 2017. Stay tuned for more updates on these goals as PCORI and PCORnet partner to advance cancer research and care.