Why #IHeartHIT as an Executive and a Mom

CHICAGO, Illinois, Oct. 3 -- The Healthcare Information and Management Systems Society issued the following news:

I have worked in health IT for over 12 years, and I have experienced firsthand the shift from a fee-for-service world to value-based care models and population health methodologies. During my career, I have worked for a major electronic medical record (EMR) vendor and on an EMR implementation team at Children's Healthcare of Atlanta and I currently work for a solutions vendor in population health. As technology and processes have advanced, I have personally benefitted from health IT.

My son Shenlin is from China. When Shenlin was 6 years old, my husband and I adopted him and brought him to the U.S. to join our family. Shenlin was born with club feet - both left and right - and shortened digits due to amniotic band syndrome while he was in the womb.

Before we adopted our son, we did extensive research on his conditions. Shenlin had already received surgery on one of his feet in China, but the other still needed attention. Although we knew major challenges were ahead of us, we were confident that the U.S. healthcare system would provide our son with the best care, and the best possible chance to succeed and lead a healthy life.

Club foot is not very common in the U.S. because of early interventions and proper prenatal care, but when a child is born with this condition, strategic interventions and care begin at birth. Typical treatments include leg braces and physical therapy throughout early development and then, as a last resort, surgery. The need for treatment of an older child, like Shenlin, was rare and required thoughtful consideration and expertise.

Finding the right medical doctor for our son became what felt like a part-time job because so few physicians possessed the education and training necessary to treat children over the age of 2 with clubfoot. The search required extensive research followed by traveling and interviewing a number of physicians across the country that could potentially help us. Not only did we have to identify the right physician, but also the correct treatment and therapy plans, surgeon and ongoing treatment plan. We eventually narrowed down our options to a physician locally in Atlanta at Emory University, and physicians in Charlotte, North Carolina, and Iowa City, Iowa.

No Consistency From One System to the Next

After 18 months of research and preparation, we finally brought our son home to the United States and began the cross-country visits so that the three different physicians could examine him. If you know anything about healthcare IT infrastructure and EMR data, then you understand there is no consistency from one system to the next. For each visit, which included planes, trains, and automobiles, we had to carry hard copies of Shenlin's medical records from China - notated in Mandarin, of course - as well as his very limited U.S. medical information collected at his first pediatric visit.

My husband had the smart idea to store all of Shenlin's information on portable drives for each physician practice, but the separate practices were limited in what data they could utilize as nearly all the data was unstructured, including photos from Shenlin's Chinese medical exams. Still, at every visit, my husband was asked to recount Shenlin's story and medical history with what little information we possessed and each physician had a slightly different line of questions. It was during these three months of traveling and exams that we thought to ourselves, how very backward our healthcare system seemed.

The process was physically and emotionally taxing for our family and we struggled with questions that should have had easier answers. Why did we have to wait to share Shenlin's information until we had an in-person office visit? Why couldn't we send the information ahead of time for evaluation and then respond to a physician's questions before taking our still-adjusting son across the country? Why couldn't we have video consultations with the physicians and care teams to avoid costly travel expenses? Of course, these questions had answers, many of which were hard to accept.

The majority of healthcare in the U.S. today is reactive instead of proactive, and therefore starts with a physical exam in an office setting. Physicians are compensated based on the volume of office visits and antiquated coding systems tied to even more antiquated billing systems. At the time, telemedicine was a fairly novel concept. Not until the ICD-10 Codes, which have been postponed multiple times, was there ever an option for telemedicine consultations that were covered by typical health insurance plans, especially when surgery would ultimately be required.

We also asked ourselves, why couldn't we provide our son's medical information one time to one clinician and have it shared among physician practices across a nationwide database? Unfortunately, there is no such single standard for medical records in the U.S. healthcare system. Meaningful use only requires providers to utilize an EMR system; it does not require standardization of data and information across multiple EMRs.

Only after months of travel and exams and questions and heartache did we finally decide on a physician, a surgeon, and a treatment plan for Shenlin. We would have done anything or traveled anywhere to ease our son's transition and adjustment into our American world. Ultimately, a local option was ideal for our family, and we chose a physician and surgeon from Emory University. Their collective experience and reputation were known throughout the world, and they approached Shenlin's treatment plan conservatively. The process would include months of casting to slowly turn our son's bones, joints and muscles straight, followed by a bone surgery and more casting to continue the process of alignment of Shenlin's foot.

What We Needed Was a Care Manager

Once we settled on the best course of action, the next obstacle presented itself. The coordination of office visits, a time-consuming casting process, and the scheduling of surgery and subsequent rehabilitation visits became another part-time job. In retrospect, what we needed was a care manager to coordinate different facilities and services and help us estimate costs and timelines. Instead, we guessed about costs and the time-off we'd have to arrange for Shenlin's care, which would require countless visits, procedures and a hospital stay.

Only now are care managers becoming a more routine option for hospitals post-discharge and they're often in place more to prevent costly hospital readmissions than manage the ongoing care and physical therapy of an 8-year-old like Shenlin who is not considered high risk.

In my experience as a mother and my experience working in Health IT, I am witness to the fact that we are beginning to provide better care through population health management methodologies. However, our healthcare system is constantly in flux and is slow to change.

As we celebrate National Health IT Week and recognize all the good that we do in improving data integration and patient care, we also need to realize that our work is not done. Integrated patient information, history and tracking are key to improving the quality of care and patient experience. As Health IT professionals, we must steadfastly continue to improve the healthcare delivery system and processes because we all, at some point in our lives, will rely on them for the care of our families, our friends and ourselves.