Jackie Ng-Osorio - Equity for Heart Patients
In September 2019, I was selected as one of 12 patients to provide my voice as a cardiovascular patient and survivor at the launch of the American Heart Association’s Value of Healthcare Initiative in Washington, DC. The Initiative is a multi-stakeholder effort to make sure that as the healthcare system transitions to paying for value, the voice of the cardiovascular patient is heard. (Value essentially means paying based on a patient’s outcomes and the quality of care he or she received, rather than the number of services delivered.)
At the time that I received my pacemaker for complete heart block 16 years earlier, I was only 27 years old. Although I had a family history of cardiovascular disease, was a woman, and a Native Hawaiian (the indigenous group of Hawaii), I was also a runner who had completed my first marathon and ate a healthy diet. Being Native Hawaiian puts me at risk for many health outcomes, for in Hawaii, Native Hawaiians have the highest prevalence of cardiovascular disease, strokes at earlier ages, diabetes and metabolic syndrome. Native Hawaiians comprise of almost a quarter of the state’s population, have the highest rates of poverty, and many work multiple jobs. Together, these contribute to a poorer status of health among the major ethnic groups in Hawaii.
Therefore, my presence in Washington DC to share my voice was particularly important. So were the voices of the other patients and survivors in attendance. We were as diverse as the communities that we came from, yet we shared a common story with heart health.
As a starting point for the Initiative’s work, AHA leaders wanted to hear directly from patients about what was important to us when we interact with our clinicians and the healthcare system - how do we measure the “success” of a visit and what attributes of a clinician are most important to us. We had been asked a few background questions related to this as preparation for our participation and the answers were discussed with the full group at the launch. The group was genuinely interested in how to incorporate our opinions into the work of the Initiative, but we were only the start to understand the patient’s perspective. It was important to us that the true voice of a larger population was incorporated. Therefore, we encouraged the leaders to develop a larger survey and to share it with the members of this Patient Support Network. As engaged patients, seeking to better understand their conditions and find strength in their shared experience of others, we thought this was the perfect venue to gather unique perspectives.
That survey is now complete, and the findings were published last month. You may have participated in this survey and if you did, thank you for sharing your experience. As expected, the findings shed great insight into how we, patients, value health and how it differs across demographics. Due to the diversity of the country’s population, we cannot create just one system to be used universally to solve all the problems, we need to understand where the patient is coming from, what is the context that surrounds that individual. Rural America is different from a city that has many universities and university health centers there to provide the current and innovative care.
Yet, we all deserve to be able to receive the best healthcare independent of what zip code we live in and common themes emerged from the findings. There were themes that cross diversity because they are important to everyone – competent and knowledgeable providers, clear treatment plans, affordable treatments, whether surgeries, technologies, or prescriptions. The way in which patients define value in healthcare may differ across age groups or ethnic groups, but to really provide the best care, we must understand the differences between how patients and clinicians define value in healthcare and develop a system that accommodates all sentiments. Cost may be discussed among both groups but the way in which it is used and understood is different, and for this reason we need a greater understanding of what the patient can afford monetarily, but also what the patient needs to survive and thrive.
As our country moves forward to create equity in daily living, we must create equity in health care. Understanding the patients’ perspective is one way in which the American Heart Association is doing that.
