Amy CaronWhen I’m asked why I left a sought after career in the fashion industry to get a master’s in public health I have an easy reply, I was a health care ‘consumer’ and I was mad. I was reminded about my experience recently when I read new guidance on immunosuppressant therapy in lupus patients that are in remission. Years ago when I found my perfect balance of diet, rest, exercise, and alternative care I had a long period of remission that prompted me to ask my rheumatologist if we could taper the azathioprine. The response was, “Look, take your medication or you’re going to get sick, if you have a problem with doing that, you should take it elsewhere.” And with that, like so many other times, I went to the front desk, kindly asked for a copy of my paper records, and never went back.

I began to wonder how older adults would handle similar situations with their doctors, or people from different cultural backgrounds, or anyone that had a fraction of my tenacity. How could they be their own advocates in a system that incentivizes overuse with little regard for improved health outcomes or patient satisfaction? And why was my voice lost in the conversation about my own medical care? From those experiences (of course not all were that disheartening) grew a sense of responsibility to somehow become a part of a necessary change in the health care system, and at the time that was all I knew.

I describe my experience as a lupus patient like being a gear spinning round and round in the middle of a gang of other gears spinning at all different speeds and rotations. I was responsible for getting information between providers, but I didn’t have the power to really get them to use it. I could never quite make my primary care doctor connect and roll with my rheumatologist, and my acupuncturist never had a chance of making it onto the machine at all as far as they were concerned. We just left that spinning on a whole other plane.

When my insurance changed, of course I had to recruit a new health care team. One day my health history didn’t get over to my new rheumatologist in time for my appointment, and I forgot my journal. And so it began… the series of questions trying to map out the course of my illness in the most accurate way possible to arm my new doctor with the information needed to treat me. As a patient with a chronic illness, the frustration of duplicative testing and repeated questions, especially during an onset, is palpable. I just didn’t feel like trying to recount my history, and he knew it.

“Ok, hang on,” he said, “have you ever been seen here before?”

“Pffft, please, it’s a big place, I don’t remember.” Like I said, I wasn’t feeling it.

“Ok, well let’s see what we can find out. Do you mind if I head to the computer?”

Computer? Sure, whatever (in the true spirit of a 20 something).

And just like that, the dynamic changed. He was able to recount some of my milestones; with dates and medications I was taking at the time. It certainly wasn’t a complete picture, but it was information and it was correct and he was telling me the narrative, not the other way around. I said, “Yes! That’s totally me.” The information that was in front of us facilitated a dialogue, and I became a believer in health information technology.

It’s years later now and I’ve had the fortune of serving the Primary Care Information Project at the New York City Health Department and am now serving the Massachusetts’ Executive Office of Health and Human Services’ statewide health information exchange, Mass HIway. My experiences working with health care providers have given me invaluable insights I didn’t have as a patient. Like, why would my doctor go home and read the latest research in all the medical journals every night? They have dinner to make, family to spend time with, and need to shake off a long day of running a business or dealing with all of the operational challenges of just trying to be a doctor. And what could a doctor do with a bunch of paper from another doctor anyway? It’s not structured, not searchable, not in the format they’re used to… and why try? That would take time away from seeing more patients in a day, which meant less revenue. Instead, rather than review the test results to make an informed decision that day, reorder them and have me come in again for a follow up. Simple as that; the business of being a doctor.

What I’ve also learned is that the big take home message is technology is not a magic bullet. It’s a tool that has an important role to play in system transformation, but it’s just a gear in the machine. For example, programs like Accountable Care Organizations and Patient Centered Medical Homes are helping promote the value of improved patient outcomes, over quantity of services. Technology is essential to success, but it’s only a piece. The bigger picture is that these programs can support a shift away from the business of health care and bring quality of care back into focus. They offer some opportunity for doctors to realign their efforts with what drives them: helping patients.

Again, these are just independent gears that we’re all working to piece together to make the system work, and there are many more to consider. But I’ll close as I started and that’s with the most important piece of all, the patient. Yes, we’re all in this to help patients, whether it’s delivering quality care or helping to create a system to support it, but at the same time we’re also patients ourselves. And as patients, we need to realize, accept, and act upon our responsibility in managing our health and help others become empowered to do the same. This is how we all can take part in the transformation of our health and health care delivery systems.

As a patient, I’m certainly not mad anymore; I’m informed and responsible. Trust me, I know how hard it is to maintain a healthy lifestyle, but I’m also proof that doing so can work. I’ve been in remission and drug free over five years through a combination of my own dedication to my health outside of the doctor’s office, and having a care team that’s inspired by it and incorporates it into how they care for me. This type of doctor/patient partnership relies on shared motivation, communication, and information. Thankfully, the health care system is changing to offer the space to support that.

Professionally, it’s been a difficult transition from my ‘I just have to get it done’ mentality I employed to succeed in the fashion industry to navigating the landscape of multiple stakeholders, drivers, and contingencies in a government agency. I lack finesse and I’m a bit sharp at times. When I struggle with it, I think about how government pioneered the essential design elements of the Internet, and in 20 years… maybe 30 or so… when systems are integrated and information is flowing securely and seamlessly between a collaborative, holistic health care team, I’ll take great pride in knowing I was a small part of such a great evolution.

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Amy Caron is a fashion industry veteran turned outreach, communications, and education professional in health information technology. She’s served the statewide health information exchange, Mass HIway, operated by the Massachusetts’ Executive Office of Health and Human Services and the New York City Department of Health and Mental Hygiene’s Primary Care Information Project and regional extension center, NYC REACH.  She’s a seasoned independent traveler, community health worker, fitness coach, storyteller, and introvert. She holds a MPH from CUNY School of Public Health and a BA from the University of Massachusetts, Amherst. Connect on Twitter or Linkedin.

 

 

 

 

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