Why We Need Accountable Accountable Care—A True Story

This summer I was reminded, once again on a very personal level, why I started Axial Exchange.  Five years since company inception, I’ve learned a thing or two about Health Care, including a deep understanding of all the buzzwords -- ACOs, accountable care, narrow networks, shared savings -- you get the idea.  Notice what word isn’t in any of these industry buzzwords?  P-A-T-I-E-N-T.

Many of you know that I started this company based on my own journey into the abyss of health care -- the everybody, nobody, somebody system where no one was accountable.  It took years and ten physicians to ultimately get diagnosed and another year to recover to the point I could work again.  Since I started this company, I’ve listened to hundreds of similar stories, and I know the true number is in the millions -- I just don’t hear every one.

This time, the person that fell into the cracks was my thirteen year old daughter.  When these issues started, she was eight.  She started to get too many colds, sore throats, nasal infections, low grade fevers, and blinding headaches -- you name it.  By third grade, she missed one third of the school year.  She’d lie at home in the fetal position.  She started to lose interest in her friends and extracurricular activities.  Her pediatrician would just say, “some kids get sicker than others.”  But she was my second, and I knew that something was wrong.  Fourth grade was the same story.  She was out at least two days every week.  We went to allergists, ENTs, optometrists, and, ultimately, a pediatric neurologist about her headaches. Everyone looked in her nose and said, “Her nose is really swollen shut.” She was diagnosed with “Chronic Daily Headaches”, a precursor to Migraines and sent home with something horribly strong and numbing -- she hated taking it.

Fifth and sixth grade were okay -- maybe twenty percent of the time she was sick, but she learned how to power through her pain.  But, she wasn’t the same girl.  Always tired, she had no energy for extracurricular activities, and everything was a struggle.  We kept taking her to the pediatrician and urgent care when it got particularly bad and usually by then she had a sinus infection and would get antibiotics.  By seventh grade, she was downright depressed -- who wouldn’t be?  We kept searching for answers.

I finally took her to my doctor, who though primarily an adult physician, is an excellent diagnostician.  He ran a complete series of blood tests, and found her iron was so low as to be negligible.  She had pneumonia, which our pediatrician (now fired) had missed.  She had to get iron IVs to get back any energy.  She was low in every major vitamin and minerals, probably from being chronically sick.  She had food sensitivities, but no allergies.  He didn’t know the root cause, but at least we started treating the symptoms.

Finally, we got to the right ENT, courtesy of a distant relative who is a nurse and knows “the good doctors”.  This ENT saw my daughter through two bouts of antibiotics and nasal steroids and said. “This isn’t right”.  He wanted to do a CT scan.  We said sure.  We had to wait two weeks for our insurance to approve, which they thankfully did.  We went back to the ENT, and guess what we found -- our daughter had extra sinuses that were blocking her nasal passage to a small tube, allowing infections to breed.  Because she had so many infections, she also had multiple polyps in her nose.  She is now scheduled for surgery this month.

At first I was so relieved to finally have a root cause, and one that was visually evident,  so simple to fix, I was doing handstands. But, then I got angry.  Who in the medical system was responsible for helping out my daughter?  Where was the accountability?  When there is no diagnoses, what do you do?

At the end of the day, patients and family members are their own advocates.  No one owns the patient’s problem in the healthcare system.  The system has care coordinators, but not problem owners.  This is a structural issue that needs fixing as we move to a world of accountable care, which at this point is more about payment systems than real changes to the way systems functions.  In the world of software, where Axial Exchange operates, we are always responsible for issues through to resolution.  In fact, before we get a penny from any customer, we are contractually obligated to fix things or people won’t do business with us. Can you imagine asking for this in health care as a buyer of services?  Sometimes problems are downright hard to figure out, and we need multiple specialists involved to get to what we call “root cause analysis”.  

Thankfully, my daughter is going to be fine. I can’t give her back the last five formative years, but I wish I could.  I do wonder what she might be like if she wasn’t in pain and fatigued all the time.   My heart breaks when I hear similar stories with families with crippling diseases that are degenerative.

Accountable care must be accountable -- not just at a population level with good population metrics, but at a patient level.  Each patient should have someone to reach out to that is accountable for getting them diagnosed, and helping them with a plan.  The patient then has the responsibility to be an active participant in their own care.  But first, they must know what the issue is, and have an advocate that is accountable.