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Why a connected community of health matters

Although I am in the “business” of HIT, I also believe that healthcare is very personal. I think it is incredibly important to connect WHAT we do to an awareness of WHY we do it – a personal connection makes all that we do matter. The more we share stories about why we do what we do, the bigger difference we can make together. I’d like to share my why.

Finding my why was not easy

Through my career changes, I’ve searched for the fulfillment that comes with doing life-changing work. It wasn’t until I came to Allscripts and spent time with clinicians that I saw the impact of my work on people’s lives.

Belonging to a community of health inspires me to wake up every day wanting to make a change. It’s no coincidence that finding my why corresponds with a family member’s traumatic health journey, which began 15 years ago in North Carolina.

She was a young, healthy woman thriving as a restaurant manager with her whole life ahead of her. She was my little sister.

I’ll never forget when she called me and mentioned red stains on her shirt after work one day. I joked that it was probably ketchup because it couldn’t be cancer, right?

The cancer diagnoses that became complicated

The problem of being diagnosed with breast cancer in North Carolina meant she had no family or support system nearby, as I was in Indiana and my parents were in Ohio. She had a double mastectomy and reconstruction through one health system. Shortly after, she became very isolated and depressed, a common side effect of a traumatic diagnosis. She needed support, so I moved her to Indianapolis with me. Less than a year later, her cancer reoccurred.

Realizing a patient is so much more than just a patient

This time around it meant surgeries, chemotherapy, radiation and me becoming her caregiver. As difficult as that was with my career and two young children, I embraced it. Unfortunately, her moving meant we had to basically start over with her medical records at an entirely new health system.

I can’t describe how difficult it was to get records from North Carolina and to try to help her new doctors understand her history. Recalling which tests she had taken and those results was nearly impossible. The responsibility was seemingly on us to get the right data and provide it to the new doctors. Most times we couldn’t get or find what was needed. Hence, every conversation with every doctor felt like Groundhog Day – always starting our story over from the beginning.

The complexity of her traumatic diagnoses became apparent through addiction

My sister’s mental stress started to show in a very serious way. While undergoing chemo and radiation, she began numbing herself with alcohol and pills, which made finding appropriate care more difficult.

There were countless times I called 911 during her treatment just to get her to the hospital after finding her incoherent. It became clear that I could no longer give her the best care.

She went to live with our mom in a rural Ohio town. There, we saw a gradual decline in her mental health as she balanced rehab and cancer treatments. Five years ago, a hospital visit for pneumonia revealed heart failure.

Given five years to live with disconnected care

The very drugs she was given to save her life from cancer are the same ones that damaged her heart beyond repair. Her primary and preferred hospital is the nearest community hospital, the one in which we were born, just a town over, but she has to drive farther to Columbus, Ohio, for her oncology and heart care. With now a plethora of doctors – she last counted 11 – her care has become more and more complicated and confusing.

The two hospitals have different HIT solutions that don’t talk to each other. There’s no overall care plan, no sharing of data between her many caregivers, or even a single patient portal to help inform her or my family of next steps. During one ED visit, the doctor advised her to stop taking all of her medications (she has 23 different prescriptions) without consenting the other key doctors from the other hospital. It was my sister who had to call her cardiologist to ask if this was a good decision. Needless to say, it was NOT and would have had dreadful impact.

Three states, 4 hospitals, countless labs and specialists, and no connectivity. My sister, the patient, is simply not at the center of care.

In cases like this, the patient feels helpless and in the dark. She once said to me: “My biggest concern is that my doctors are not communicating and making a valid effort together to help me get better. Instead, it feels like they throw me through hoops and just send me to other doctors, as if I’m too problematic to help anymore.”

For my sister, disconnected care has led to:

  • Anxiety and depression
  • Hopelessness
  • Financial strain
  • Lack of trust in caregivers
  • Lack of understanding of care plan
  • Lack of information to help herself
  • Feeling as if she has no advocates

Can you imagine having only five years left and feeling like your doctors aren’t working together to get you to six?

Currently, my sister is doing well despite her diagnosis and day-to-day challenges, but this is one story among many. I’m sharing this because we have the ability to change all of this today.

We can put the patient truly at the center of care, ensuring that she always knows what is next for her care, what medications to take when and why, to help schedule appointments across multiple providers.

We can provide doctors with a single care plan and longitudinal view of a patient’s care no matter which hospital or EMR that data resides. We can alert doctors to crucial clinical information seamlessly and within their EMR workflows in order to make informed decisions at the right time. We can include family members in the patient journey so that they can become informed advocates. A connected community of health is a compassionate one. At Allscripts, our vision is to build open, connected communities of health.

My sister is my why. She makes what I do matter every day. What’s your why?

Comments 1

  1. Tammy Hamrick 12/20/2019

    Thank you for sharing your very personal story. It relays the message well of why we in healthcare have got to get connected- we’ve got to get this right.
    I hope your sister will continue to do well and ultimately beats the odds.

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