(Originally published by ai-med.io)
I’m a cancer patient, a cancer mom, and a medical device innovator. Over the past 7 years, I’ve gone from being terrified of needles and hospitals, to spending weeks on end in hospitals, injecting myself – and my child – with medications, frequenting hospitals to train nurses on product use, and bringing a patient perspective and voice to medical innovation.
Our family was pushed into the cancer world with my diagnosis of Hodgkin’s Lymphoma in January 2011, after months of enduring misdiagnosis and mistakes. Scared and shocked, I weaned my 8-month-old daughter, and started chemotherapy. Just a few months later, after months of misdiagnosis and mistakes again, our then 11-month-old daughter, Saoirse, was diagnosed with stage 4 high risk Neuroblastoma – an aggressive pediatric cancer. Devastated and numb, we signed consent forms, were admitted to the hospital, and started our second cancer journey.
We pushed on. I went into remission quickly, and finished treatments that July, and Saoirse did very well with her treatments initially, and was in remission by October. We looked into different treatment options for her and decided to go to NYC for a newer, less toxic therapy for the second part of her treatment.
When we did the intake testing for the new clinical trial, we were told her disease was back, and she was no longer qualified for that trial and needed to do additional chemo. We were devastated. Sadly, Saoirse became resistant to her chemotherapy, and – although we tried many options – she died on December 13, 2011 – just 6 weeks after her relapse.
As we transitioned into grief, we took a different approach to honoring Saoirse’s life. While she was in treatment, I created a couple of devices to help manage her PICC and CVC lines. We had shared them with the patients and families we had met on the oncology floor, but we knew more patients needed our help. Even though it would be a difficult journey, we decided to bring these devices to market, and help as many people as possible.
Not long after starting our company, we found out we were expecting our second child. Excited and scared at the same time, we were happy to be growing our family, and happy to have a positive thing to look forward to.
I was referred to specialists because of my previous treatments, and the baby and I were closely tracked and monitored throughout my pregnancy. Lochlan was born in July of 2013 – a perfectly healthy, happy boy.
Just six months later, after a bout with kidney stones, a CT scan showed swollen lymph nodes in my abdomen. After more tests, and a biopsy, it was confirmed. I had relapsed with Hodgkin’s Lymphoma.
Over the past 7 years, there have been innumerable changes and advancements in healthcare in general, and this is definitely true in the world of cancer care. However, as a patient, I’ve seen some of these advancements interrupt the interactions between patient and provider; leading patients to feel more like a test subject, rather than a person, and straining the trust and confidence patients have in their providers.
Nurturing the patient/provider relationship is key to improving health outcomes and, with the move toward value-based care, an important piece of the healthcare puzzle.
There are three specific events that happened in our care which I believe display the widening of this patient/provider gap. The first happens to almost every patient with a chronic or critical illness at some point on his or her patient journey – the dreaded medical error.
Whether it is continued misdiagnosis, or basic human error, medical errors can wreak havoc not only on the patient’s health, but also on the patient/provider relationship. We experienced many errors in our journeys toward diagnosis and through treatment, but two stick out as critical errors that could have easily been solved with some simple tools.
During her debulking surgery, Saoirse had both her adrenal glands removed. While this left her tumor free, it also left her dependent on steroids for the rest of her life.
An endocrinologist managed this critical piece of her care – which meant a separate team from oncology, and a separate office to track her chart. This led to two almost critically dangerous errors.
The first came when switching the type of high dose steroid she was given. A resident insisted to give her both types for the first dose, which we refused, and a quick call to endocrinology (which we had to make ourselves) confirmed we were right.
The second mistake came when Saoirse’s at home lab draw showed a critically low sodium level that wasn’t reported to any of her doctors, or to us (this was before patient portals).
Without her adrenal glands, Saoirse’s body was unable to control how much sodium left her system, so this value was critical to her safety – especially when at home.
We were lucky to have a very attentive VNA (Visiting Nurse Association) nurse who immediately contacted Saoirse’s doctors when she saw the level two days later and sent us into clinic for management. Without this Saoirse would have been at risk for seizures or even death.
We can never remove human error completely from medicine, but if the tools that flag critical blood levels and medication contradictions could automatically report problems to the appropriate doctors and patients, Saoirse could have been protected from some of these mistakes and been safer at home.
In the age of electronic medical records, the risk of some of these errors is already lowered but, with patient loads on the rise and quantitatively more data being collected more frequently on each patient, having machines that can “blast” important and emergent things loudly to providers could make the difference between health and major complications for patients.
With all that digital data in mind, as a patient it’s hard for me to understand how complex and difficult it still is to share my own information with new providers and hospital systems.
When Saoirse was in remission, and after my relapse, we started to consult with other hospitals on different treatment options for our cancers. But even today, I’m shocked at how much physical paperwork there is to get that information sent, and the fact I’m still required to carry a physical CD of my imaging to an upload center at the new location by hand (and the number of people I have to go through to do this).
Not to mention the pushback patients get when they want their current providers to send their data to someone new. In an age of almost instant data transfer, I feel this could be streamlined in a much more patient friendly way.
While I will admit to not having knowledge of all the legal and bureaucratic red tape standing in the way of this becoming reality, my hope is that as patients begin to take a stand in demanding easier access to their data, this also leads to easier and improved data sharing between providers and institutions.
When you are a chronic patient, feeling like a person can be the highlight of your day
Most recently, and in my opinion most importantly, my hope is that these improved tools of data processing and information sharing can give providers back what has eluded them – time to spend one on one with their patients.
When I emergently needed a urology consult and a stent placement, I was referred to a new urologist for my care. While thankful that he was able to fit me in on a holiday weekend and add my procedure to an already full day of surgery, I noticed an almost complete loss of patient to provider interaction.
At first, I missed it (being in extreme pain and discomfort for that first meeting). But every subsequent visit, I noticed something – the doctor would come into the room, say hi, how are you like if he met me on the street, and then pick up a voice-to-type recorder and start funneling information into the computer.
Not once was I asked symptoms, or if I had questions. At first, I thought it was a fluke. But after 4 separate visits all going this way, I wondered how he ever actually found anything improving or declining in his patients.
While I think this is a rather extreme example of the “wall” between patient and provider, I don’t think it’s particularly uncommon.
Even primary care physicians sit at computers and type in what you say to them as you are sharing your concerns and symptoms. That face-to-face encounter happens only when they are shining a light in your eyes or down your throat. There is no conversational element to the patient/provider relationship.
Now, I’m not saying I want to be best friends with my urologist, but feeling less like a video recording would help me have more faith that my concerns were being listened to, and make me feel more like a person than a patient. And when you are a chronic patient, feeling like a person can be the highlight of your day.
With advancements in technology – artificial intelligence included – there is an opportunity to create tools and systems that give time and confidence back into these patient/provider relationships.
Where providers have been bogged down in overwhelming amounts of data and the time intensive processes involved in making use of them, we can see the opportunity for machines and tools to help narrow down those data to what is meaningful.
The opportunity to give the ever-elusive time back to providers, and in turn give providers the opportunity to improve their relationships with patients, can bring us out of the world of patients’ distrust and frustrations with their healthcare and into a more collaborative relationship between patient and provider.
These relationships can empower patients to improve their own health and make healthier decisions, in turn improving outcomes, decreasing overall costs and – most importantly – improving people’s lives!