Accessing Our Electronic Health Records to Empower Us as Patients

Barry Dickman

Interoperability, project management, quality assurance and testing in healthcare IT probably sounds like dry, esoteric issues to most people. But these are issues I have devoted much of my 25-year career to—and experiences with friends and family have only strengthened my commitment to this passion. My experience in the healthcare field has enabled me to be a more effective advocate for myself as a patient and as a caregiver for my loved ones as they navigate the complexities of our healthcare system.

Recently, my twin brother went through bilateral total knee replacement. The extensive surgery itself went well, but he ended up with an infection at the incision site post-surgery. His orthopedic surgeon prescribed a standard antibiotic. My brother didn’t think to question the diagnosis or the treatment, but I encouraged him to find out why this particular antibiotic was prescribed. Had a culture been performed? Had the doctor checked for possible drug interactions with other medications? My brother had no idea, and wasn’t sure how to find out. Furthermore, he was unaware that he could question his provider’s treatment protocol and a bit resistant at first to doing so.

The HITECH Act, HIPAA and parts of the Affordable Care Act (ACA) mandate that providers must provide patients with access to medical records, particularly Electronic Health Records (EHRs). In theory, doctors should also be able to easily transfer records in order to better coordinate care and services between all of the parties involved in a patient’s healthcare. Like most surgical patients, my brother interacted with multiple providers: hospitals, outpatient rehabilitation centers, his orthopedic surgeon, his primary care doctor, his pharmacist, his physical therapist and numerous labs and technicians. But were all of them on the same page and coordinating their efforts? He didn’t know. I doubted it.

I encouraged my brother to contact his surgeon and find out how he could access his EHR. He was not aware that laws required his doctors and other providers to give him this access, and his providers had not told him. I told him, because as his brother, I wanted him to be informed in order to advocate for himself. Once he had access, he was able to see that no culture had been performed, and he questioned his doctor about the treatment protocol and choice of antibiotic.

As second example, access to medical records and their interoperability were also important for a friend after his second heart attack. He was unhappy with his care and wanted to switch providers. Happily, he was able to access his EHR and have it transferred to his new provider, including records for all hospital admissions, lab work, prescription medications and procedures performed by this doctor. Because the records systems used by his previous and new primary care provider were interoperable, these records were transferred seamlessly to ensure continuity of care.

This is the way it should work for all patients. Unfortunately, we are still way off from the full vision of easily accessible and transferable health records. In part, this is a matter of vendor conformance and compliance to industry standards, uniform adoption and implementation of those standards, and development of standards that ensure technical and workflow interoperability. Far too many systems are still not interoperable (and the definition of interoperable still remains a bit nebulous and open to interpretation), making record transfer difficult and splitting patient records into multiple incompatible files held by various providers. More work remains to be done at the legal, legislative and policy level to provide guidance and standards for the vendor community. But is also a matter of patient education: many people, like my brother, don’t know how to access their records or even that they are supposed to be able to.

I have worked in healthcare management and IT for more than 25 years, most recently as a Program Manager for Battelle focused on health analytics and IT for federal government clients. Over the last decade, much of my work has focused on high-profile federal health IT initiatives in addition to the challenges and barriers to successful interoperability. I have authored numerous blogs, papers, and presentations and have been an active member of and subject matter expert to the healthcare industry. These experiences have provided a unique insight into the U.S. healthcare system.

Patients and their caregivers should not require my background and experience in order to advocate for themselves or others in the use of their healthcare system. Access to medical records, and the secure exchange of those health records, empowers patients and caregivers to take a more active role in their healthcare. It allows them to take charge of their healthcare decisions, gives them visibility into the tests and medications they have been prescribed, and enables them to easily switch providers or obtain specialty services as directed by a primary care provider to ensure they are getting the care they need. It also enables providers to better work together to ensure continuity of care for their patients. This is why we need to continue to work in the industry to make access and interoperability for health records a priority.

As my brother’s saga continued, he became a staunch advocate for his healthcare coverage, access to care and services. He now better understands the information accessible to him as a patient and more informed consumer of his personal healthcare. It is my hope that with improved standards, guidance for the vendor community, and more education for patients and healthcare providers, we will see the healthcare system improve for all patients and families.