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Beyond Meaningful Use: #EmpowerHIT and #HITworks Applications for a Family in Crisis

A call to action for HIMSS17 health IT vendors.

By Mandi Bishop

Imagine your 7 year-old child develops flu symptoms on Friday, and wakes up feverish and lethargic enough for you to bring her to the local ER on Saturday. They examine her, prescribe an antibiotic, and give you options: wait and see whether the antibiotic works, or take her to the children’s hospital for further testing. It may be meningitis, they tell you; but they also tell you it may just be the latest flu. The choice is given, matter-of-factly, without emphasis on the possible consequences of either approach.

Your family is on a high-deductible health insurance plan. The children’s hospital is listed on your plan’s network, but they don’t give you a list of the providers who are included in-network.

What do you do?

It’s likely you wait. After all, the care team at the local ER didn’t seem alarmed. They’re medical professionals; you are not. If it were a likely health emergency, they would have insisted. Right?

When she wakes up non-responsive on Sunday morning, you rush her to the children’s hospital ER. Your child is suddenly on a gurney surrounded by lab coats and scrubs - a sea of adults who frequently don face masks. They suspect meningitis, but don’t know which type; they admit her into the pediatric ICU (PICU). Blood tests, urine tests, X-rays, CT scans, a spinal tap and an MRI are ordered and executed. Your little girl is in and out of consciousness, but even when awake, she’s not talking; she whimpers and cries, and finally a peripherally inserted central catheter (PICC) line is placed so the staff can modulate the pain and discomfort of all the pokes and prods.

Fast-forward 24 hours and you’re there in the family waiting room of the PICU. You’re out of your child’s room because the neurologist has ordered a second MRI with contrast, so that they can examine the blood vessels supplying the brain. Previous scans showed evidence of TIA, or minor strokes; they didn’t tell you what that might mean. Meanwhile, the infectious disease specialist told you they think it may be an autoimmune disorder, but they didn’t specify what kind, so you’re frantically Googling for any information you can find, eyes glazing over at pages of information on Lupus.

Eight hours later, you have a diagnosis: a rare, progressive, cerebral vascular disorder. The only treatment option with any long-term positive effect is neurosurgery. Her condition has to stabilize before surgery, which means she will be in the PICU for an indefinite amount of time. She is visited by a steady parade of specialists and attending physicians, and her case becomes a staple chart review stop on PICU rounds for each shift of residents.

You and your husband haven’t slept or eaten anything not out of a vending machine for 48 hours, and as her condition changes hour-by-hour, leaving the hospital for any significant period of time leaves you with a sense of paralyzing guilt. Your work is understanding, as is your husband’s; you both have vacation time saved, after decades of service. Your daughter’s other parents (because you are a blended family, as is more than 40% of American families) don’t have the same flexibility with their jobs; they come and go throughout the day, with the mother returning late each evening to sleep at her child’s bedside.

Meanwhile, you have three other children at home. School is in session, and there are make-up tests to take after school, and orthodontist appointments before school, meals to be made and groceries to be bought. Life, for them, must keep going as normally as possible – even if yours is in suspended animation. So, a coalition of friends, family, and colleagues spin up a support squad, coordinating activities and rides. When the kids half-jokingly ask, “how long are we going to have random adults taking care of us,” you have to respond, “I don’t know.” And you don’t. There is no telling how long this life-on-pause moment will last, or what “after” might look like.

How will you cope? How long can you (and your spouse) be away from work without being fired? How long can you depend on your extended support network to help take care of mundane things like keeping food in the fridge and making sure the kids get their field trip permission slips signed? What will be the short and long-term impacts of this event, on every aspect of your family’s lives and futures?

Do you know the answers to those questions? I sure don’t. And I’m a member of the extended support network, as a friend of the family undergoing this ordeal. The stress and anguish I feel just being on the periphery is intense; I cannot imagine how it feels to be the parent. I think the parents deserve a medal for remembering to continue to breathe, amidst all this.

So what does this have to do with healthcare IT?

Watching this unfold around me, I see many opportunities for applications of healthcare IT. On the interoperability front, clearly, this child’s ongoing health maintenance is going to require frequent, substantive, coordinated care across a number of specialists. As her condition is progressive, it will be imperative that her providers collectively monitor changes over time; health information exchange (HIE, the verb) is a necessity, and not just within the same EHR or health system. Details about her medication plan, diagnostic testing schedule and results trends, and most importantly her images and all imaging result reports, MUST be available electronically, on-demand, at point-of-care.

On the patient-centric front, her digitized, complete medical record must also be available for all of her parents, for storage in a PHR or HIE-of-1. Automated medication reconciliation is an advancement that would greatly benefit cases like hers, which involve a medically complex pediatric patient; the parents shouldn’t have to fear the potentially fatal repercussions of forgetting to list the correct drug or dose when running down the litany of dozens of prescriptions.

And then there are the practical processes that don’t currently seem to have healthcare IT fixes – but should. Consent and release forms should be centralized and shared via HIE, so that each parent only has to fill out a single document, regardless of the number of departments within the same hospital the child visits during her extended stay. The HL7 Admit/Discharge/Transfer (ADT) transaction document created upon the PICU admission should have automatically generated an authorization request and sent it to the insurance company. That same ADT should have notified the child’s pediatrician of the event. That same ADT should have been used in the insurer’s workflow to create a new case, and assign a case worker.

With the insurer and associated provider network a known quantity, after the patient has been admitted, and once a diagnosis has been established, the EHR should alert each time a new clinician enters a “detailed or comprehensive physical exam” event (99221-99223 CPT codes) into the encounter if no new diagnosis has been added. Unless medically necessary, and/or requested and approved by the parents, the onslaught of white coats and scrubs is increasing the family’s stressors and is financially ruinous.

Finally, from the perspective of complex and social needs integration into the healthcare system, applicable community services (all levels of government as well as non-profit organizations) should be loaded into the EHR as a workflow tab, available at a moment’s notice to provide to the families seeking answers in their hour of need. Although it would be wonderful for this health IT addition to have a business rules engine driving “life decision support” through contextual awareness of the condition prognosis and care plan impacts, it would be a start to simply have a list of entities and contact information.

While the HIMSS exhibit floor will buzz with the latest and greatest examples of the “art of the possible”, I sincerely hope that someone, somewhere, reads this and comes up with simple, unsexy-but-impactful solutions to the fundamental problems that still plague our industry – solutions that would make times like this just a little bit better for people like my friend.

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