Who Owns Your Medical Tests Results and Personal Health Data?

Personal health records (PHRs) have been developed in the US as part of the Institute of Medicine's goal of improving healthcare quality and making it more patient-centered as well as through patient pressure to have greater control of their health data. The PHR is also integral to the US National Health Information Network (NHIN), which will give all Americans access to their electronic health records by 2014. However, little research has been published on how PHRs compare with other types of medical records or how privacy concerns are to be addressed.

Melinda Whetstone and Ebrahim Randeree of the College of Information, at Florida State University, Tallahassee explain that employers, insurance companies, healthcare providers and independent entities have increasing access to PHRs. However, whether the PHR, and other types of electronic records (Electronic Medical Record (EMR) and Electronic Health Record (EHR), have been adopted and implemented successfully remains unclear.

One of the aims of adopting the PHR is to reduce the chances of medical errors caused by overuse, under use or misuse of a patient's medical data. The Institute of Medicine estimated that there are almost 100,000 deaths each year caused by such preventable mistakes.

Nevertheless, from the patient perspective, the adoption of PHRs must provide benefits that outweigh any trust and privacy issues, the researchers say. Fundamentally, a PHR will be an electronic, lifelong resource containing an individual's health information, which they and authorized healthcare workers can access at any time, to allow them to make appropriate health decisions. The Tallahassee team suggests that individuals will own and manage the information in the PHR.

Data in a PHR would include a patient's immunizations, allergies and adverse drug reactions, medications, herbal remedies taken, past and present illnesses and hospitalizations, surgeries and other procedures, laboratory test results, and family history.

The PHR might also contain living wills and advance directives, organ donor authorization, recent physical examination data, healthcare workers' opinions, other test results, eye and dental records, permission and consent forms, and even lifestyle information, such as details of smoking, drinking, drug use, exercise and diet.

The benefits of adopting a secure, online PHR system include allowing access to a comprehensive personal health history that can be used by healthcare workers. Additionally, it could give patients the means to become their own health advocate, provide benchmarks and prompts for maintenance.

"The ability to create a PHR is available. The desire and need for patients to utilize this technology is real. The intangible question of 'Will they come?' has yet to be answered."