Lost Voice: Addressing healthcare inefficiencies through patient equality

After attending the Healthcare Information Management Systems Society (HIMSS ) 2018 in Las Vegas in March, Christina Farr, the CNBC reporter who covers health and technology, tweeted

Defining patients

Farr’s tweet  received over 70 replies and 942 “likes.” One part of the tweet that elicited response was: “We’ll all be patients and/or caregivers someday.”

In other words, “patients” are people with chronic conditions. The statistics on chronic conditions in America are staggering. According to the CDC, half of all US adults have at least one chronic condition. Moreover, half of those adults living with a chronic condition are, in point of fact, living with two or more chronic conditions.1

The Lost Voice

Another Twitter response came from a professional cancer patient advocate:

These voices on Twitter are pointing out a problem in the entire healthcare industry, the missing patient voice. Without the patient, there is an information gap.

One presentation at the HIMSS conference tackled this information gap. A mother and daughter, Kristina and Kate Sheridan, described the inefficiencies in their experience living with chronic conditions.*

The Sheridans’ HIMSS 2018 presentation

When she was 11 years old, a Lyme disease-infected tick bit Kate Sheridan, now a senior at George Mason University. Even with three weeks of oral antibiotics, her health declined. During the next three years, she said, “I saw over 30 doctors, was given 15 different diagnoses and was hospitalized five times. Over that time, the disease progressed through my body and my cognitive abilities began to fade.” Her ordeal included a year and a half of severe burning pain during which she lost her ability to run, read and write. “I went from a straight A student to a special needs student who couldn’t read a page in a book. It moved through my limbs, swelling every joint in my body and robbing me of my energy. I went from being a competitive athlete to bed-ridden.”

Appointments with physicians were a trial. “My family and I were overwhelmed with everything–appointments, became a blur. We would walk in, my doctors would ask, ‘what’s changed in the last two months?’ and we would struggle to put into words–an emergency room visit, to added supplements, to purchasing a wheelchair. I had so many diagnoses that accurately communicating my medical history had become impossible,” she said.

The turning point for her treatment came with an Excel sheet created by her parents. Her parents collected all her medical data, and overlaid that data with a tracking system where Kate could input information on the severity of her 26 symptoms. This made it possible for her physicians to understand the whole story. “Being able to capture that information ahead of time insured that we disclosed everything fully and allowed us to visualize my symptoms over time,” Kate said in her presentation.

Her mother, Kristina, is an aeronautic engineer by training. She was caring for Kate and Kate’s younger brother, who also had Lyme disease and who was experiencing a similar course in his illness.

During her portion of the presentation, Kristina described two “realizations” that she made during her caregiver journey. First, she found that, “It was easier for me to walk into that launch control center and launch a satellite than it was for me to be at home and manage my children’s care.” Kristina explained that she had provided input to the developers and designers of the systems of launch control at her work. She had helped test the systems and they had been created so that she could use them. With her children, “All I had to go on was my gut and a piece of paper that the hospital might have given me.” She had no tools to help her decide if they needed to go to the emergency room or wait.

Second, she realized that her children were the experts in what was happening to them.

These two insights motivated her to develop a tool, that functions like their Excel sheet, to help other patients. Specifically, their tool, created at a non-profit organization, Mitre, where Kristina now works, includes a journaling function, calendar and scheduling to help keep up with medications, appointments and life in general. It also features symptom-tracking that maps to the appropriate code standards. “Patients have a lot to stay on top of. Medications, appointments and life—they coach basketball, they have to go to school, or to work,” Kristina said in her presentation.

Lessons for the life science industry

The most significant inefficiency that Kristina identified during her family’s medical odyssey was that patients are not equal members of their healthcare team. Their voice, she said, is too often lost. In essence, without an equal voice, their expertise in their illness is not acknowledged.

Although the story in their presentation focused on patient-physician communication in the clinical setting, it is not just about provider-patient communications. Ninety-nine percent of the time, patients with chronic conditions are not in the clinical setting. They are coping with their disorder and integrating new behaviors into their lives.

For example, listening to patients and caregivers might clarify why people miss medications.  The pejorative words non-compliant or non-adherent (see Adherence and Compliance: Is Our Language Patient Centric?) do not recognize living with a chronic condition. Not doing what is prescribed can have a perfectly reasonable explanation. These words are not information–seeking. By using the terms, adherence and compliance, valuable data is lost.

If researchers, developers, designers and providers don’t understand the burden of chronic disorders, how can they create effective treatments, or technological innovations to “disrupt” healthcare? The answers, the routes to understanding, and to reducing inefficiencies begin with hearing the patient and caregiver. Multi-directional communication among all members of healthcare/life science team could reduce healthcare costs, research and development costs, manufacturing costs and unnecessary suffering.

Leaving experts off of the team has led to poor clinical trial recruitment and resulted in production of products that don’t work for the people who use them. Moving patients onto the team in the clinic, in the pharmaceutical and medical device industry, in hospitals and the health insurance industry will make an enormous difference in reducing inefficiencies. Why waste money and time by leaving the experts out? (See Patients MacGyvering: a resource for device and equipment manufacturers)

* To see the full video presentation, go to https://www.facebook.com/HIMSSpage/videos/10156113497658334/

See our eBook, “Experts by Experience 2017”

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1 Ward BW, Schiller JS, Goodman RA. Multiple Chronic Conditions Among US Adults: A 2012 Update. Prev Chronic Dis.2014;11:130389. DOI: http://dx.doi.org/10.5888/pcd11.130389.