My greatest joy in life, my young son, also introduced the hardest challenges I have ever faced.
The thing is, when it comes to caring for family, most people can accomplish more than they ever previously imagined. I found out the hard way that I can operate a ventilator and care for a tracheostomy tube properly, all while navigating the challenges of just learning how to be a parent. My amazing wife was right there with me along the way of course—and better at it, if I’m being honest.
There are families right now beginning a journey into pediatric home health similar to the experiences my family has had. Looking back, I see the potential for better, faster and smarter health information technology to lessen the burdens other families might face in similar situations. That belief in potential drives me now, as a student in health information technology, to go forth into a career of making it so.
Among the many areas of complex pediatric home health, the opportunities that stand out most to me for health IT to offer improvements are in coordinating nursing care for complex discharges, improving the interoperability of nursing records created at home, and enabling easier reporting for home health patients.
One of the challenges my family faced in getting our son home was a requirement from the hospital for pediatric home health nursing coverage; specifically that we arrange two weeks of 24/7 nursing coverage at the time of discharge. To set us up, the hospital gave us a list of some of the nursing agencies they worked with—just a sheet of paper with agency names and contact information.
My family got lucky. One of the first agencies we contacted was eager to work with us, met with us in the hospital, promised they had us covered and Medicaid approved the coverage quickly.
But imagine that rather than being handed lists to start cold calling, parents are given the contact information for providers that have already been queried through a health information exchange about potential care and have responded back that they have the ability to provide services.
Even if hospitals keep handing out nothing but lists for cold calling, changes to the state publication of licensed skilled nursing providers would make it more clear to parents which providers can help. My state’s website for selecting primary care providers for individuals with Medicaid can sort by which providers accept specific managed care plans, but no such searching capability exists for home nursing coverage. Also, my state’s website for finding licensed skilled nursing providers allows for sorting by county, but not by type of service such as pediatric or adult care.
Out of the three nursing agencies that worked in my home, only one has transitioned to any form of electronic health records. The transition is only partial, so while we benefit from increased legibility of typed nursing notes, the medication record, plan of care and other important documents are still in a large paper binder and the system for updating orders is burdensome.
When nurses have to update orders, medication records and other documents by hand, it doesn’t just slow the nurse down, it also makes it harder for other caregivers, such as parents, who need to access and check the records.
When my family had two nursing agencies working for us at the same time, both with 100% paper records, the challenges were magnified due to a lack of communication between the agencies. It was not uncommon for one agency to record an order correctly while another wrote it down improperly. Sometimes both would record an order incorrectly because the second agency would copy the order from the first agency’s incorrect paper record.
Electronic health records alone won’t resolve all errors. After all, an order taken over the phone can be typed in improperly, just the same as it can be written down wrong. However, there is a greater ability for electronic record systems to flag orders and have them reviewed immediately for mistakes.
RELATED: Interoperability Takes a Village
Interoperability offers the potential for automatic quality checks on new orders entered into electronic health records by home health providers. Aside from the ability of electronic systems to receive properly dictated orders straight from providers, there’s also the possibility of automatic alerts from record systems that a new order has been entered, alerting parents, caregivers, nursing supervisors and even the provider that gave the order, enabling them to double check it was recorded properly.
Parents and caregivers serve as de facto nursing supervisors, liaisons between providers and nursing staff, and documentation auditors. It is time to truly empower them as best we can. By adapting and leveraging electronic health record tools we can improve record entry at home, share records between providers and caregivers with ease, and ensure the quality of updates and new information. These changes would significantly lessen the burden on parents and allow them to focus more on being parents and less on being auditors of documentation.
Another major benefit of bringing more technology into advanced pediatric home health is the ability of technology to enable the correct collection of data and information for pediatric patients in the process of weaning off a ventilator and tracheostomy at home. My son no longer requires the ventilator he came home with, and the more recent decannulation of his tracheostomy tube was successful.
To say that this is a complex process is a significant understatement, but it is also largely data driven. The process for weaning my son off the ventilator required the collection of vital signs multiple times a day, sometimes as often as eight times or more every day, and reporting his performance to his pulmonary team once per week. There wasn’t a specific form or spreadsheet to collect the information and the nursing notes didn’t have a dedicated space for it either.
We ended up printing our own table for collecting the information, occasionally writing in the activity information into the margins when we thought it was important to write down. If I forgot to average the data or write down the high and low values before calling the pulmonary team, I found myself doing the math on the fly when asked about it. On occasion, something wouldn’t get recorded as even the nursing staff occasionally forgot to write down a number. We were left to our own devices to record the information, and we did our best, but it certainly wasn’t perfect and without a doubt a little bit of help would’ve gone a long way.
A low-tech solution for better data collection and reporting would be a better spreadsheet, outlined and designed to collect all the information the pulmonary care provider needs. Smart health devices that transmit data automatically to providers, with alerts for readings outside of normal range, represent a possible high-tech solution. There’s a lot of middle ground as well, as technology can be leveraged to create better form designs to accommodate reporting data from both nurses and parents, and enabling the reporting of the data by nursing agencies through electronic records and parental reporting through patient care portals.
What I envision is, with the right combination of software and smart devices, a more seamless system for collecting data, capable of being updated by parents, other caregivers and nurses, that provides automatic alerts if data out of acceptable range is recorded. Such a system would also allow for greater analysis and benchmarking of patient performance.
There are far more ways that improved technology can assist the parents of children needing complex care than the few ideas I’ve outlined here. My challenge to others already working to bring better health information technology to home care is to keep pushing for interoperability, for better communication between multiple providers of care, and most importantly, to leverage technology to empower patients and their caregivers.
My son and other pediatric home health patients often cannot speak for themselves. To say it is challenging as a parent to speak for your child while also managing extremely complex care does not do justice to the immensity of the task.
Empowering parents with the technological tools to better serve as caregivers, to find nursing care faster, to more easily review and correct records, to easily share those records among different agencies, and to properly collect important data driving changes in care, can provide significant benefits.
In my opinion, the greatest potential benefit of all is that health IT can enable parents to focus more on being parents and a little bit less on being auditors of documentation.
I am still perhaps a bit of an idealist on the potential benefits of health IT, but there is absolutely a need to bring more information technology into the process of improving care for complex pediatric home health patients and their families, so let’s keep working toward turning potential into practical solutions.
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Originally published June 11, 2019