We Aren’t There Yet: Health IT (HIT) Shortcomings in 2016

This past weekend my husband Frank and I watched Matt Damon in The Martian. The movie invokes just enough current technology, NASA, and space station scenes to make travel to Mars seem realistic. It makes manned space travel to and from Mars seem like a simple matter, with the creation of water and an indoor potato farm as the reality stretch. Then the movie credits roll, the lights come on, and it’s back to reality. Someone’s surely calculating the food, fuel, and trajectories needed to land a spacecraft on Mars, but it’s not part of everyday life on Earth, yet.

This week, however, I didn’t need the theater lights to come on for a dose of real life. In this blog I write a lot about new technology, pervasive sensing, personal healthcare, and interoperability, and after my recent experience I’m feeling like I’ve been futuristic and didn’t even know it.

A real-life story about the state of HIT

My primary care physician is part of a large healthcare organization in downtown Boston and I live and work in the Boston suburbs. Going to the city for a medical appointment involves about 45 minutes of driving each way on a good day when avoiding rush hour. During my annual checkup last fall I talked to my physician about using a nearby community hospital radiology group for my annual mammogram. She said, “Sure, that will be fine,” and she printed out an electronic prescription. If I had planned to drive back into the city to her institution for my mammogram, she would have completed a computerized order entry for the x-ray, but use of an outside entity meant that she had to enter an e-prescription, print it out, and hand it to me.

This past week I called the community hospital to schedule my mammogram and they were very happy to do it. “Of course,” they noted, “we must have your previous mammograms from the healthcare center in the city before we can read your films.” They would perform the x-ray next week as scheduled, but they would not read the films without the old films for comparison. I asked the mammogram scheduler how I should go about getting my films to her and she suggested that I call my primary physician and have them sent over.

Up to this point in this process my primary physician’s EHR functionality had just provided a printed prescription for this x-ray. I had to schedule the x-ray appointment by phone call, and in establishing a relationship with a new healthcare entity had to track down previous x-rays from another institution. The old x-rays are mine, but I don’t have ready access to share them with a provider of my choosing. So far HIT wasn’t helping me out very much.

As I disconnected from my appointment scheduling phone call with the community hospital I thought HIT might, yet, assist me with my health data management. I logged into my patient portal. I actually have 2 patient portal accounts with the downtown Boston healthcare entity: a primary care portal and a specialty care portal. It really didn’t matter because neither portal provided access to my x-ray images or an online process for requesting my x-rays be shared with another healthcare entity.

Fortunately, my smart phone facilitates telephonic communication, so I googled the phone number for my primary care physician’s office and made a phone call. The primary care office staff was available to answer the phone and they were pleasant. They checked my office record, confirmed that I had the x-rays the previous year, and reported that they could not request the records on my behalf, but that a quick call to the Breast Health Center should work. They kindly provided the phone number.

I called the Breast Health Center and spoke to a chipper administrative person who confirmed the x-rays were available. She also was not able to assist with arranging for the information transfer and asked me to call the x-ray file room. She kindly provided the phone number.

I called the x-ray file room, gave my name, and inquired about my x-rays. The file room gentleman was also pleasant, but really didn’t need my name or any time to look at my records.

“You can come right on by the file room and pick up your x-rays anytime you like,” he said.

“Oh, no”, I replied, “That is a big trip for me into the city, so that just won’t work.”

“No problem,” he answered, “Go by your new x-ray place, pick up a request for records form, sign it, and mail it to us at the file room.”

I explained that even going by the community hospital was not a quick trip and asked for any other options. My last and only other option was to write a “To Whom It May Concern” letter requesting my x-rays with instructions for where to send them, sign it, and fax it back into the file room.

“So,” I asked, “After I fax you this letter authorizing release of my x-ray images will you send those electronically to the community hospital?”

“No,” he replied, “We’ll need a mailing address.”

“You’ll mail them a CD or a disc with the images?” I asked.

“No,” he said, “We’ll mail them a copy of the films.”

Before I could even complete that process I had to call the community hospital back and ask for a mailing address.

In the end I faxed a letter with my name and other key personal identifiers to a file room somewhere in the basement of a healthcare organization in the center of downtown Boston, and I hope to goodness the proper person collected it from the fax machine, processed the request, and mailed copies of my x-rays to the community hospital. Otherwise, my new mammogram results will not be available to me until that mail packet arrives.

Reality check 2016

• Appointments for my hair salon can be made online, but healthcare appointments still require a phone call
• It is my responsibility to deliver my past medical records to my new healthcare provider since they are unable to make that request without my written permission
• I have to manage multiple patient portals
• My patient portals show me important data, but they don’t allow me to request services from my healthcare providers
• Even my primary care provider and specialists in the same healthcare organization are not connected electronically
• My healthcare data is being held privately and securely, often in a basement file room
• I can fax a letter presumably written by me and signed by me to a file room to request my records, but I can’t request them through my secure patient portal
• People still actually fax and mail important stuff
• Fortunately, I have a good smart phone and the rest of my life is made simple by technology

Before I leave you with too much discouraging news, let me light a hopeful fire. As mentioned in earlier blogs, FHIR offers a bright future for interoperability. It doesn’t star Matt Damon or Jessica Chastain, but it’s getting superstar billing for a blockbuster on the HIT event horizon. Now I can clearly see that my interest in interoperability is not just about transitions of care and physician support, it’s for me as a patient, too.

Dugan Maddux, MD, FACP, is the Vice President for CKD Initiatives for FMC-NA. Before her foray into the business side of medicine, Dr. Maddux spent 18 years practicing nephrology in Danville, Virginia. During this time, she and her husband, Dr. Frank Maddux, developed a nephrology-focused Electronic Health Record. She and Frank also developed Voice Expeditions, which features the Nephrology Oral History project, a collection of interviews of the early dialysis pioneers.