Health IT: Supporting Us as Caregivers

Being a caregiver is hard, but health IT can help caregivers manage a loved one’s care. From tracking multiple medications to having all your health information in one place, health IT and new mobile technology are proving to be valuable resources to patients and people like me, those of us who take care of a loved one.

As a child, I was always oblivious to the difficulty of navigating the healthcare system. My mother coordinated my care and made sure I visited the appropriate doctors at the appropriate time. That changed in 2008, towards the end of my senior year in college, when she was diagnosed with End Stage Renal Disease. I was stunned by the amount of work and the responsibilities that came to me as my mother’s caregiver and “medical home.”

For starters, I had no information about my mother’s medical history—she was the superwoman and glue that held our household together. So when I was asked about family history and who her primary care physician was, her ER nurse and doctor were met with my tears and endless blank stares.

How was I supposed to know?

The healthcare system did not care that I didn’t know and my level of readiness was not their concern. My life was transformed and from that day forward, I was dubbed caregiver—care coordinator and documentarian extraordinaire for my sweet mother.

The life of a caregiver is not glamorous—no one aspires to be a caregiver because it usually signals something has gone terribly wrong. More than 90 million caregivers across the U.S. provide nearly $450 billion worth of unpaid care annually. Many of these caregivers are full-time workers. Younger Americans between the ages of 18 and 29 make up 36% of the family caregiver population.

As a family caregiver it means the decisions you make have a direct impact on your patient’s daily comfort and their overall quality of life. We perform both complex medical and nursing services like medication management and wound care for our loved ones, but also the mundane tasks like bathing. I’m frequently responsible for coordinating her care and making sure the proper pieces of health information flow between her primary care doctor and the myriad of specialists.

I’ve essentially become my mother’s medical home, making sure that she followed up with the home care agency when she was discharged from a hospital-stay, or bringing a summary of the last doctor’s visit from her primary care physician in Maryland to her nephrologist in Washington, D.C.

There are also a number of co-morbidities associated with a disease like ESRD, so making sure she has an assigned specialist to monitor her heart, vision, nutrition, etc. was something I needed to stay on top of. Yes, she had a primary care physician, but the reality is, as a caregiver I’m much more sensitive to her needs.

Health Information Technology has been an extremely useful tool in managing/coordinating my mother’s care. The road wasn’t easy, the learning curve was steep, but I’ve been using a number of mobile health applications to help manage my mother’s overall wellbeing a little better. I am much more efficient and have learned to save a lot of time.

With the help of these different health applications, I can compile the summary notes from her visits and document questions I have about her care so that when she does need to see her doctor, the questions are well-informed and very specific. The number of readmissions due to her kidney disease and diabetes has decreased dramatically—from 14 readmits in 2011 to two only admissions so far this year. When healthcare professionals in the hospital can’t seem to talk to one another or share notes, I at least have all the up-to-date insurance information, prescription lists, and her physician contacts centralized in one place.

The other benefit I’ve experienced is with the coordination of her social services. I’ve found there’s a disconnect between the health component and human services. My mother’s diagnosis and disability meant she had to stop work. The best way to describe the coordination of social services, pre-health IT, is “baptism by fire” (no kidding). However, with mobile apps, like Blue Button, I’ve been able to do some of the financial reconciliation on her Medicare claims data, often required for some of the social services offered at the state level.

Health Information Technology can be fun (really). Health IT has helped me become more efficient—I’m now using a number of food apps to get ESRD-friendly recipes (we have to be mindful of things like acid, and potassium among other things). I’ve also downloaded applications that provide us with at-home exercises/activities.

It’s been a rewarding experience as an ONC team member. I’ve had the opportunity to use the tools and better understand the policies that are digitizing health care in a way that offers patients (and their families) better access, better health and lowered costs. As we continue our work on the implementation of meaningful use stage 2, aligning our program work with patient-centered models like ACOs and the medical home.

I know that these new tools will eventually translate into better health outcomes, and help us better engage in the coordination of our own health care.

Fadesola Adetosoye is a Caregiver and Patient Advocate and a Public Affairs Manager at the Office of the National Coordinator for Health IT

2 Comments

  1. I just came across your article this morning. Thank and very informative information and will pass this onto my staff.

  2. Tiffany Green says:

    I would have to say reading this blog made me think a lot more about how I currently track my health related documents. I have seen several specialist in the past three years and when I am ask to provide them with information they too are meet with a blink stare. This blog definitely has encourage me to look further into health IT as welll as encourage my mother to do the same. Fade, there is a major disconnect between the health component and human services. Time is definitely lost, procedures, treatment, and even diagnosis are delayed when trying to connect the two. Fade is well put together and I am so proud of you. I pray all is well with your mom.

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