Electronic personal health records and limiting information transfer in health care

Electronic personal health records (PHRs) have generated great interest in healthcare and offer the potential to support core functions of public health. PHRs might become powerful tools for syndromic surveillance and service evaluation, in addition to increasing patient engagement in care. But PHRs might also pose a risk to public health reporting if they facilitate the selective withholding of medical information by patients or physicians.

We conducted a random sample survey of primary care physicians to determine their views on PHRs and withholding medical information when transferring patient records within and between providers and others; 267 physicians responded (response rate 49.6%).

Almost half (44.9%) of surveyed physicians report they sometimes, often or always agree to patient requests that information be withheld from medical records, and 32.7% of physicians agreed that electronic records make it easier to release only part of a record to others. However, relatively few physicians (10%) report receiving frequent (monthly or more often) patient requests to withhold information, and only 5.1% report the regular use of “shadow files” for especially sensitive information. Also, the exclusive use of electronic records was not significantly associated with confirming risks of PHRs.

A substantial minority of physicians is concerned that electronic personal health records will permit medical information to be selectively withheld from files. However, few physicians experience frequent patient requests to withhold data, and at the moment it does not appear that physicians using electronic record systems are helping patients hide information from public health tracking systems.