Privacy and Collaboration
All information obtained, including responses to the DISTANCE Survey, are kept confidential; are maintained by the Division of Research; and used for research purposes only. No information gathered will become part of anyone's medical record or shared with their doctor. Also, no individuals will ever be identified in published reports. We only report our findings for the whole group of survey participants. The DISTANCE Survey has been approved by the Kaiser Foundation Research Institute's Institutional Review Board, which oversees all research and protection of study participants. This board reviews study plans to ensure that researchers respect and protect the privacy and confidentiality of study participants.
We are not free to release participants' personal data under our promise to them regarding confidentiality. However, the DISTANCE is interested in collaborations with external researchers. DISTANCE investigators are particularly interested in comparing processes and outcomes in this insured population with uniform access to care to disparities observed in population-based samples, where quality and access to care vary widely by social strata. Requests for collaboration must be submitted to the director of the central coordinating center. Before collaborations can be initiated, proposals require review and approval by the Publications and Presentations (P&P) Committee. This committee was formed to: (i) Ensure accurate, uniform, timely and high quality reporting of DISTANCE findings; (ii) Preserve the scientific integrity of the study, and (iii) Safeguard the rights and confidentiality of participants.
For more information or to collaborate, please contact Howard H. Moffet, MPH.