Caring for our loved ones with Health IT: Celebrating National Caregivers Month

Lisa Lewis | November 15, 2018

This blog is written to honor all of the caregivers who give tirelessly of themselves for a loved one and often feel left alone to navigate the healthcare system. I want you to know you are not alone. We in ONC stand with you both professionally and personally as we dedicate our efforts to improving the health and well-being of individuals and communities through the use of technology and health information that is accessible when and where it matters most. We do this for all Americans, and always keep caregivers and patients at the forefront of what we do.

Most of us chose the healthcare field for similar yet different reasons. Healthcare professionals focus on service to others; at the heart of it, we all want to help people whether we are government employees, clinicians, researchers, or entrepreneurs. However, it is our distinctly personal reasons for choosing this field, our “why,” that motivate us to keep pushing forward. I want to share with you my “why” – why I chose to work in the Office of the National Coordinator for Health Information Technology (ONC) and why I continue to lead this agency within the Department of Health and Human Services that is on the cutting edge of transforming healthcare delivery. You see, my “why” is because when I was a caregiver, I saw up close and personal the dramatic difference health information technology (health IT) can make in the lives of the American people that we serve.

…for me health IT has been the great equalizer because it allows us to have access to the information we need, when we need it, including in times of crisis.

As a very young child, I lived with my grandparents in a small town in West Virginia; it was a poor area with a concentration of minorities. As a World War II Veteran who proudly and honorably served his country, my grandfather returned to a society that remained segregated, including in respect to the healthcare he received. He became a coalminer and toiled in the mines for several decades.  He was my hero, and, as a little girl, I promised him I would take care of him when he became older as he had cared for me.

My grandfather enjoyed good health until his late 80’s, when his health worsened and he was diagnosed with multiple chronic conditions. I started going with him to his medical appointments to help coordinate his care, and in this very rural area, the closest doctor was two towns away. So, two towns away we drove to see my grandfather’s primary care physician. The wait always lasted at least an hour, while the visits lasted no more than 15 minutes unless I prolonged the visit by asking questions to better understand my grandfather’s care plan.

My grandfather’s and my story very much followed the progression of health IT. When I started going to the doctor with my grandfather, all of his records, all of his medical information was in paper form. To get information, I either had to pay for copies of records or ask the doctor lots of questions and take copious notes. After the passing of the Health Information Technology for Economic and Clinical Health (HITECH) Act, this doctor’s office, two towns over from my small hometown, implemented an Electronic Health Record (EHR), and I would leave each visit with a care summary.  With the care summary in hand, I felt like a world of information opened up to me to better coordinate my grandfather’s care.

Later, my grandfather needed more help, so he came to live with me.  I often say that my grandfather came to live with me, but his EHR could not make the journey from West Virginia to Maryland. Once my grandfather was living here in the DMV (DC, Maryland, and Virginia area) and his medical information entered into a new EHR, his information flowed between his primary care doctor and his specialists. It was such a relief to take him to the doctor and not have to provide his entire list of medications and recite his medical conditions over and over again! I was able to not only see but personally feel the relief that health IT provides by allowing information to move to those who need it when they need it most. There is still progress to be made, but for me health IT has been the great equalizer because it allows us to have access to the information we need, when we need it, including in times of crisis.

My grandfather died five years ago, but he and I (along with my family who also assisted with his care) were able to coordinate his care in a way we could not have imagined even a decade before. Whether you are a coalminer’s granddaughter or an heiress, health IT allows you to better understand and coordinate the care of the people you are helping.

Because of this experience as my grandfather’s primary caregiver, the “why” that motivates me daily is that I want everyone to have access to medical information whether it is to care for themselves or family, friends, and others, whether it is to deliver care, or whether it is for research purposes. We all have a right to that information. Information that flows seamlessly is the fuel that ignites disruption and changes lives for the better, and information technology gives access to critical information and levels the playing field in every aspect of our lives, including healthcare.

Since the passing of the HITECH Act, we at ONC have worked with our partners to digitize the healthcare system, develop a roadmap to interoperability, and demonstrate interoperability in and across various care settings. Now, it is time to ensure the seamless flow of health information to where it needs to be when it needs to be there in a secure manner, every time. We are on the path to data liquidity through the use of open application programming interfaces, by identifying and addressing information blocking, and by advancing a trusted exchange framework and common agreement that sets the governing principles for sharing electronic health information. At ONC, we will continue to work to advance interoperability every day. Let’s work together to make this happen for caregivers and care recipients every day, every time.