Millennial Medicine: We Need to do Better

Last week, I synced my finances to the latest free money tracking and forecasting software available to man. Within five minutes, I linked my retirement accounts, personal savings, and investments to a service that could very well have been funneling money to a prince of Siberia. The service proved efficient and disturbingly easy, and I couldn’t help but think why the same sort of technology hasn’t been applied to health records.

A few years ago, I took care of my father with ALS. Its rare, paralyzing, terminal, expensive, and complicated. When someone in your family has this or something similar, they need round the clock care, and you deal with issues you never thought you would deal with for a parent until they are much, much older. My situation was rare in that my father’s disease was rare. But, the idea of navigating through the healthcare system is nothing new.

Compared to the average healthcare consumer, I should have had an advantage: I have a masters degree in public health, a steady job in healthcare dissemination, and I deal with the government on research projects on a daily basis. This should have been where I shined in my personal life, but it wasn’t. Oddly enough, in my inner circle of girlfriends, two of them have lost their dads to cancer, one to a rare medulloblastoma (brain cancer), and the other to stage-4 lung cancer. Being the strong, independent women that we are, we took charge of our family’s care, and, as a result we’ve all witnessed so many holes where this confusing, inefficient system could be much better.

Every new doctor we saw had the same blank stare on their face when asking about my father’s history and diagnosis. This was shocking: I felt like they should have already known why we were there and at least taken the time to review a chart or call the referring specialist, or something where it appeared they spent 20 seconds to get an overview. In a world where the days of a doctor are spent maximizing the number of patients seen, this can be too much to ask. But, there has to be a better way to sync information on patients, especially for those with rare or complex diseases with multiple co-morbidities. There was not a single place I could go that would have provided me a comprehensive to-do list from his neurologist, pulmonologist, nutritionist, physical therapist, social worker, nursing care, his clinical social worker, his Medicare coverage, and his finances. If there was someone in charge, no one told me about it. And, as an aside, I don’t live in a rural area. I live in the premier medical center in the United States with access to the best and brightest specialists in the nation. Yet, I carried around a printout of his 30 plus medications hoping it was the latest one to give to whatever doctor we were seeing that day. Side note: this is a method that third world hospitals use for medical records.

Depending on your doctor (I’ll call them providers throughout this piece) of choice, this may or may not be an issue for you. Providers are wising up to this problem of convoluted information and the idea that information silos can, at times, create more problems than privacy is worth. For instance, many hospitals and private practices are instituting web portals for patient records once they leave a facility. Managed care models are making more sophisticated dashboards for their patients, but it is far from across the board and in this age should be turnkey. There seem to be blips of success rather than sweeping change with standardized services. There are several examples of successful pilot initiatives: for childhood cancer survivors, a portal exists in Texas that can provide all their medical records to current and future providers with the touch of a button. It’s an app, and it’s wonderful.

In my own personal experience, I go to a comprehensive women’s center every year for my annual checkup where I have the option to see an internal medicine doctor, a gynecologist, a nutritionist, a “well-being” specialist, (whatever that is), and everyone is under one zen roof. All of my tests and medical records are available in one place. It’s improved over the years, and I can see tests and records from five years back when I started going there. However, I know if I ever switch providers, there will be a disconnect in information. I will likely have to repeat some tests and raise my annual healthcare costs, and there will likely be some communication issues. I will be the holder of this information. For me, it’s not a problem, but I am also a healthy patient. If I had multiple conditions, especially one that could impair cognition, this is a disaster waiting to happen.

The Millennial generation is not against to synchronizing private information. We embrace it with our finances, so why couldn’t we expand it to healthcare? What if the problem was solved on a region-by-region basis? What if, for complex diagnosis, there was an established consortium of providers who could more easily share information across a portal. What if, when my father was diagnosed, I was given a list of providers who had already agreed to be on board with treating ALS patients in Houston, and I knew all his information from them would be in one place that I could login to daily. What if someone sat me down after the appointment and walked me through the Medicare application process, and what if I was recommended to a list of clinical trials available for ALS patients. That could have saved me hours on the phone and the computer and wasting the time of many state employees.

This is a problem, and one that is tricky with HIPPA, but is one we shouldn’t ignore if we want to lower cost, lessen the duplication of services, synthesize information for diagnosis, and improve the patient experience. When taking care of my dad, I was exhausted because the disease was terrible. I wasn’t always in the right frame of mind to be making life-changing decisions for someone and could have used all the help in the world. As healthcare providers, we should be giving our patients and their families as much access to information as possible without sacrificing the integrity of services. In 2017, there should be a better way.