Christine Rekash – Every Heartbeat Matters
The American Heart Association in conjunction with Duke Margolis Center for Health Policy launched its Value of Healthcare Initiative in September 2019 in Washington DC. I was invited to participate in this initiative along with 11 other heart patients from across the nation. This was an opportunity for me, a heart valve patient, to participate in drafting a patient survey examining how cardiovascular patients, such as myself, defined value based on the interactions with the health care system. The survey was created in order to ensure the work of the initiative was capturing the patient perspective. At the initial Summit, the forum sparked conversations among patients as well as forty stakeholders surrounding the urgent challenges in cardiovascular diseases, namely the problems facing patients in accessing and deriving quality and value from the healthcare system. Each patient ambassador had an opportunity to share his/ her journey with heart disease and their journey navigating through the health care system. From the initial diagnosis to the treatment plan including medications and devices, coverages by insurance, and prior authorization to developing predict and prevent models, all aspects of CV disease were discussed as the healthcare system transitions to paying for value rather than on the number of services delivered.
As a heart valve patient, it was important for me to have access to the best-qualified surgeon to repair the leaking mitral valve that I developed as a result of a structural abnormality. As a resident of a major metropolitan area, I was fortunate to have access to many well-established research hospitals that are known for their outstanding successes. That said, however, I felt that I needed to be 1001% comfortable with my heart literally being in the hands of the most qualified surgeon for the repair, rather than the number of services the institution delivered which contribute to their overall rankings. How does a patient feel the most comfortable with this large proposition? Simply through communication.
Communication with one’s health care provider and trust in healthcare providers is what I found to be ranked most important. Did my provider have my best interest at heart versus just being a number or a payment because I had insurance coverage? This became even more important to me as I transitioned from my cardiologist into acquiring an electrophysiologist due to enduring post-surgical complications that led to catheter ablation of the atrial flutter / a-fib risk from the open-heart surgery repair to the mitral valve. Interestingly, these two factors are also what was found to be ranked the most important in the patient survey that was published and is being shared here on the Patient Support Network.
Out of 745 survey respondents, 63.5% were female with average age of 62. As a woman, I know from my journey, that heart disease affects 1 in 3 women, greater than all forms of cancer combined, and certainly does not discriminate. Yet, there is a gap in the research and in clinical trials for women and minorities. Having said that, the survey results indicate that financial affordability is a factor that is more important for racial minorities and younger respondents. The findings of the survey underscore the importance that we cannot have a health care system that is based solely on the number of services delivered and a one size fits all approach which leave those less fortunate or non-qualified behind. Take into consideration those individuals that are from rural areas versus major metropolitan cities. These patients may differ in how they define value in healthcare, as well as those across various age groups and ethnic groups as the survey results also indicate. The current value-based health care programs, while generally focusing on measurable metrics of quality, outcomes, and costs, more often than do not include the patient experience. In order to truly transform cardiovascular care and develop a system that encompasses value, we must create a system that is equitable and accessible to all. We need to do a better job at meeting the patient where he or she is, understand where the patient is coming from, and understand the total patient concerns. Perhaps in moving toward this goal, we can look at the developments that have come as a result of the COVID-19 pandemic. In the wake of keeping patients safe and minimizing in-person health care visits, telehealth visits have exponentially increased in a very short time period. Technology companies have developed apps re-contract tracing as well as symptom checking to determine if an individual should be tested for CV-19. All of these advances have transpired in record time. Perhaps we could use these advances to moving toward a health care system where access was no longer an issue for those who are in rural areas or minorities who cannot afford health care services as the survey results demonstrate. Eliminating barriers such as these to healthcare and empowering the patient to have the best access and care is necessary for improving patient outcomes, adherence, and the quality of health care services delivered.
It is my hope that as the survey results found, that by focusing on the total patient experience this could contribute to improved value and delivery of life-saving therapies. Improving the patient experience has been linked with better clinical outcomes which is imperative that trust and communication can lead to changes in health care delivery all around. Every heartbeat matters.