Requesting Access to POC Data and Updating/Changing POC Data Requests

Extramural use of Patterns of Care data

1. Process for Requesting Access to POC Data by Extramural Investigators: POC data are available to investigators for research purposes. Although personal identifiers for all patient and medical care providers and institutions have been removed from the POC data, there remains the remote risk of re-identification. Maintaining patient and provider confidentiality is a primary concern of NCI. Therefore, POC data are not public use data files. Investigators are required to obtain approval for specific research questions in order to obtain the data. The purpose of the approval process is to ensure the confidentiality of the patients and providers. NCI will work with investigators requesting POC data files to balance their research needs with those of the individuals and institutions included in the data. Please note that POC data will be released only as a “national” data set; the registry that supplied data for a case will not be identified in these data sets.

2. POC Data Requests: Authorized personnel should prepare a proposal for access to these data. The Protocol Summary can be no more than five pages and must use the Proposal for use of Patterns of Care data (PDF, 211 KB). Data requests must also include the Request form for POC data (PDF, 106 KB).

   References can be included, if relevant. The requesting investigator must also complete the POC Data Use Agreement (DUA) (PDF, 142 KB).

   Researchers can request (1) data for multiple cancer sites collected during a single year’s POC study or (2) data collected from a single cancer site (e.g., colorectal cancer) in multiple years of POC studies. A research application cannot request all POC study data or multiple years of data involving multiple cancer sites.

3. Institutional Review Board approval: The requesting investigator must provide documentation that their Institutional Review Board (IRB) has reviewed the proposed study and either approved it or found it be exempt.

4. Use of POC Data: POC data use authorization is project specific; the released data can be used only for the project specified in the data request proposal. Investigators may not provide POC data to any other individual or investigator. Investigators may not link POC data to other files.

5. Data Retention: Data are released for one year; investigators can request additional one-year periods if the project is not complete for a maximum of five years. At the end of this period, all data must be destroyed and the investigator should email the POC contact attesting that the destruction is complete so the DUA can be closed.

6. Changes to POC Data Requests: To make changes to a previously approved POC data request, the requesting individual should submit a Data Change/Update Request form (PDF, 166 KB) to the NCI POC contact.

7. Manuscript Development: All manuscripts using POC data must be submitted to the NCI POC contact (Dr. Jennifer Croswell) for review before they can be submitted for publication. Please note that all cells presented in manuscripts, abstracts, book chapters, presentations, or other public dissemination of results from POC data analyses must include at least 5 cases or must be hidden/suppressed. Please see the ResDEC CMS Cell Size Suppression Policy for information on implementing this policy. Information on abstracts and meeting presentations involving POC data must also be submitted to NCI but does not require review and can be submitted after the presentation.

   NCI would appreciate the inclusion of the following acknowledgment in any publication or presentations using POC data: "This study used data from the NCI Patterns of Care (POC) studies. The interpretation and reporting of these data are the sole responsibility of the authors. The authors acknowledge the efforts of the National Cancer Institute; Information Management Services (IMS), Inc.; and the Surveillance, Epidemiology, and End Results (SEER) Program tumor registries in the development of the POC database."