When will patients be trusted with the keys?
There are reasons that the health care system needs health advocates and navigators. The health care system is complex, and many patients feel they are not real partners in their care. One patient lamented to me that they felt like they were being ‘blown off’ by their health care provider.
Patients have numerous frustrations such as not being listened to, contradictory information, sometimes incorrect information. They say that they don’t understand how the system works. Some have told me their care provider made them feel like they were making up or misinterpreting their symptoms. It is not unusual to hear that a young intern tells a patient who has lived a lifetime with a chronic or rare disease that they have X when they have Y. Unfortunately, the danger of being assertive and knowledgeable is to been seen as a difficult patient.
The health system has a history of being paternalist and passive-aggressive with patients. In part, this history led to the current push for a more patient-centred approach to delivering care services. We have made progress, but there is still room for improvement in making the patient a true partner in the health care system – especially when providing access to health records.
Nowhere is the need to make patients’ real partners in the health care system more significant than giving them access and control of their health records.
Currently, gaining access is cumbersome and impractical. Suggesting there is a need to give patients ownership, management, and possession is almost heresy in some settings.
The frustrations of patients feel when trying to access their health records echoes their frustrations in other areas of the health care system. People are told that their records were deleted when they were not, they hear the records don’t exist when records do exist; they hear that access to records is restricted due to concern for patient safety and privacy.
The facts are different. More patients are harmed each year because they do not have access to their health records than because they do have access. According to a JAMA Network Open study, one in five patients reports finding a mistake in their electronic health record (EHR), with 40 percent perceiving the error as serious. More than 30 percent of all harm events involving medication errors are due to errors in health records. In contrast, there are no published studies showing that providing patients access to records causes harm.
A controversy existed when I first started my career in the health sector; at the time, the argument was regarding allowing patients to self-administer morphine in a post-operative context. Many care professionals believed there was a danger of addiction and abuse if patients have control, yet clinical trials demonstrated the opposite. The research results revealed better outcomes, less pain and less use of morphine when patients have control. We need the same shift in perspective for giving patients access and control of their health records.