What Do People Affected by Cancer Think About Electronic Health Information Exchange? Results From the 2010 LIVESTRONG Electronic Health Information Exchange Survey and the 2008 Health Information National Trends Survey

Purpose: The Health Information Technology for Economic and Clinical Health (HITECH) Act has placed an emphasis on electronic health information exchange (EHIE). Research on needs of patient, especially those touched by cancer, has been sparse. Here, we present data on preferences for EHIE among those touched by cancer compared with a nationally representative sample of American adults. Methods: Two surveys were used: an online survey designed by LIVESTRONG (the Lance Armstrong Foundation) and a dualframe, nationally representative sample of adults collected through the National Cancer Institute’s Health Information National Trends Survey (HINTS). Results: The LIVESTRONG EHIE survey yielded a sample of 8,411 respondents, including 433 currently receiving cancer treatment, 298 living with cancer as a chronic disease, 2,343 post-treatment survivors, and 5,337 with no history of cancer. The HINTS sample consisted of 7,674 respondents representative of the general adult population. Comparisons revealed a strong positive view of the value of EHIE within the cancer-relevant groups, especially among those living with cancer as a chronic disease. Only about half of the general population showed a similar degree of enthusiasm for EHIE. When asked about specific functions for EHRs, respondents valued privacy and security above all, followed by improving care coordination and data sharing between providers. Conclusion: These data suggest that the EHIE needs among those touched by cancer may be greater than in the general population. This is particularly important because people affected by cancer are among those who access our health care system most frequently and who have the most at stake.