I recently had a somewhat frightening experience that required support and care from our health care system. As always, my experience was influenced by the informed perspective that comes from working in health care, and specifically in quality improvement and health information technology.
Access to Care
What started as an upset stomach and thoughts of possible food poisoning progressed rapidly over the course of a few hours and culminated in severe pain and nausea during my short flight into Salt Lake City. Something was not right and I knew I’d better address it. I am fortunate to live where I know that I have access to care for any level of concern—including urgent care providers and hospital emergency rooms when traveling, which was my situation. I made the decision to drive my rental car to the nearest emergency room to seek care and answers. Turns out that was a good idea because after labs and scan results came back, it was clear that I had acute appendicitis, and I was very grateful for the pain medication they administered!
Shared Decision Making
I then found myself in a relatively odd situation as I was traveling in from out of town—I was away from home and alone to step through a few decisions that would need to be made. I am fortunate to have access to support from caring physicians and other health care professionals based on my job and family relationships. While I waited in the hospital room trying to understand what would happen next, I was able to text and then receive a call from HealthInsight’s medical director in Utah. She helped me visualize the likely scenarios and guided me regarding questions to ask of the care team.
The care team in the ER was competent, professional and kind throughout the process. They regularly made sure my physical needs were considered. I noticed, however, that what could easily have been missed in the routine was my ability to have a say in the decisions being made for me. At multiple points, I had to interrupt the process and pose questions to the care team about my specific situation. I felt as if I needed to stand up for myself and be clear that I needed be part of the decisions being made for me, and to say why we might need to consider additional elements. This was a challenge, as I felt like I became just another patient with lab results and a diagnosis, when what I needed was just to be heard and valued as part of the decision making for my care.
Considerations that I value and questions I needed to discuss in the decision-making process included the following:
Well, I am happy to report that the decisions that we made together that day had a positive outcome. I was discharged later that night into the care of my loving wife; she made the 4 ½ hour drive up while I was in surgery and recovery! I had a quick and relatively painless recovery and return to my normal life, albeit with a greater appreciation for my health as well as for the health care professionals and my support team.
Connecting the Data Dots
Because I am a health IT geek, I have to mention the challenges with connecting my single-day encounter. Data silos still exist, where a procedure done in a hospital system isn’t effectively communicated to my primary care provider even after my multiple attempts to request that the information be shared. We are living in a world of technology that allows data transfer to happen instantaneously, using email and text alerts to push out supportive notifications to those involved. It works for everything from financial transactions to flight delays. Why do I have to wait weeks for my appendectomy report to show up for my primary care physician to begin supporting my recovery?
Needless to say, it was frustrating to still see significant gaps, both in connectivity of data systems and in training and education for those involved on both ends. In my ideal vision of the process, I anticipated my primary care provider reaching out to me, after he received notification of my ER visit and appendectomy, to check on my status and schedule a follow-up appointment. Instead, I had to call and schedule my appointment and then make multiple phone calls on both sides to try to get my ER visit documentation shared with primary care. At my follow-up appointment two weeks later, I discovered that it hadn’t been received at all. They had to call and ask it to be faxed over while I was in the office.
Health care needs to continue to look for improvements by incorporating the innovation that is happening and scaling it across the system to benefit all patients. It shouldn’t matter that I ended up in an ER run by a different organization then my PCP’s—it is my care and my health data. I just want it to be shared with those I entrust to support me in my health care decisions.
I return to the beginning to admit that the above experience and perspective is severely tainted by my experiences in quality improvement and health IT. The vast majority of patients in similar circumstances would likely have seen things differently. In the end, they likely would have had the same excellent outcomes that I did. I guess my hope is that we can continue to learn from patients that experience the health care system—both the good and the needed improvements. We will strive to fulfill our mission of serving as a primary agent in the continual improvement of the health of our communities and in the quality and effectiveness of health care. We appreciate the partners and stakeholders that do their part as well. It matters, it is needed and it is making a difference!