Electronic Health Records Benefits: An ePatient Story

Alisa Hughley | October 21, 2013

Electronic health records benefits may be clear for providers – cutting redundancy of tests, coordinating care during discharges, etc. — but these benefits also will ultimately accrue to patients in the form of better health.

In July, I participated in the Tenth Annual Healthcare Unbound Conference. I was delighted to be invited to speak on an ONC panel dedicated to “Looking Forward to the Next Frontier in Public/Private Collaboration to Promote Patient Engagement.” More importantly, I was pleased to see a government entity interested in focusing on an area that has become a personal mission of mine.

  1. Reiterating a big policy change that was made in the 2014 Edition final rule; and
  2. Providing some data and insights into comparisons between 2014 Edition and 2011 Edition certification numbers.

When I began electronically consolidating my health information last summer, the definition for success was simple: Gather all paper records in PDF format. Academic medical centers easily processed my request within days and provided an option for electronic delivery. Community hospital capabilities, in contrast, remained stuck in the last century with policies that allowed 30 days for the delivery of records by fax or snail mail. Perhaps, my greatest disappointment came when a world-renowned health center where I was getting specialized care took three months to mail a hard copy of my records. While MRI results were saved on DVD, it required a second request and 30 more days to receive this vital component of my medical history.

Electronic health records benefits for patients include:

  • More timely consults.
  • Better coordination of care through data sharing.
  • Evidence-based decision support.

Do I want my physicians to have timely consults, sharing lab results and imaging studies with one another? Absolutely! This however is not yet the reality. I’m currently under the care of one generalist and three specialists. Over a lifetime, I expect this number will surpass 20. I know that each is extraordinarily busy spending long days with a high volume of patients, and overflowing voicemail or email inboxes. Physicians triage care when necessary. Weeks go by before consults actually take place. Necessity dictated I become proactive in coordinating my care.  An ability to share health information with providers at the point of care shortens the timeline and begins that consult. This is the solution Blue Button aims to achieve.

Meaningful use has been designed to enhance patient engagement. I implore physicians and healthcare executives from organizations of all sizes to consider access-view-download-transmit as the central dogma of care coordination and shared decision-making. These capabilities lay the foundation for well-designed EHR/EMRs and patient portals, giving patients and family caregivers the tools necessary to fully engage their health care teams. Yet, the aim should not be to elicit medical compliance in the traditional sense, but rather to ensure patient healthcare choices are informed by evidence-based medicine with the provider’s clinical judgment and then aligned to the patient’s own values. Bioethicists call this respect for patient autonomy. To ePatients, it’s good medicine.

While the mission to electronically consolidate my health information continues, I’m moving forward with better tools to help me accomplish this task.

Alisa Hughley is a patient advocate and healthcare consultant. She advises healthcare organizations in community engagement and promotes organ donation and advance planning including the use of advance directives. Alisa’s journey in patient engagement began when her family was thrust into navigating the health care system after her brother Carey Hughley III was murdered by a person with untreated paranoid schizophrenia. Her brother’s organs were donated to assist others patiently waiting on the donor list for critical organs. She has since dedicated much of life to empowering patients to be active participants in managing their health and using health information technology not only as a tool in that effort but also as a communication tool to enhance the patient-provider relationship.