At a hearing of a federal committee charged with improving health care through IT, experts laid out the promise and perils of establishing digital health records that patients could access electronically.
An important preliminary barrier is convincing patients that such records can help them and not be used against them.
Many health payers and employers have started programs that create patient-based electronic health records for covered patients based on data that insurance companies collect when processing bills from doctors.
That could make patients uncomfortable with the concept of PHRs (patient health records), said Paul Tang, chief medical information officer at the Palo Alto Health Foundation.
Citing data from the non-profit Markle Foundation, Tang said that patients want their doctors to host and access their PHRs, and do not want their employers, insurance companies or governments to maintain their personal health records.
In a survey by Markle, 79 percent of patients said that if they kept their medical records online, they would feel comfortable with their primary doctor accessing information. Only 23 percent felt the same way for their insurance company.
Tang felt that doctors were also probably in the best position to explain PHRs to patients and to get a sense of what patients wanted and needed in such systems.
The Palo Alto Medical Foundation already gives patients access to their medical information through PAMFOnline, which allows patients to see test results, schedule appointments and send e-mails to their doctors.
Tens of thousands of patients use the system, and reported satisfaction rates are very high. However, the system generally does not contain information about health care obtained from non-affiliated health care providers.
Other speakers at the hearing warned that PHRs could expose doctors to potential lawsuits if doctors did not use information in PHRs or used information that was inaccurate.
Still, others emphasized that many patients lacked the Internet and literacy skills to make sense of PHRs.
William Smith of the Academy for Educational Development, said PHRs should start slowly and avoid “over-engineering.”
Initial efforts should provide only the most basic information, then move on to storing important numbers, like blood sugar or cholesterol levels. These fields could vary by age, gender or disease category.
Taking an incremental approach could mean the difference between gradual acceptance and a sudden fiasco that could cause long-enduring mistrust.
“EMR and PHR might need to develop together. You want an early success, not a public failure. Dont try to do too much at one time with PHRs,” Smith stated in one of his presentation slides.
Smith also urged the panel to think creatively, jokingly suggesting the possibility of a card containing health information that also offered its owner the chance to win a trip to Jamaica.
More details of the hearing, held by the Consumer Empowerment Workgroup of the American Health Information Community, are available here.