At any given time, there are about 100,000 people in the United States in need of a kidney transplant. Despite this, the number of people who actually receive a kidney donation is still, sadly, very small. August is National Minority Organ Donation Month so we took this blog as an opportunity to discuss the challenges surrounding the transplant issue and how healthcare analytics can help.
Organ donation is and always has been an extremely complex healthcare problem. Right now, patients all over the world sit on organ donor lists, waiting to receive organs that will save or drastically improve their quality of life. But connecting an organ donor with a patient is a difficult process that can take years. Sometimes, patients don’t live long enough to receive the much needed organ.
Why is it so complicated? Why can’t kidney transplant patients find the right donors? Or get the life-saving medical procedures they need when they need it? Let’s find out.
Why Kidney Transplants Are So Challenging
The waiting list is too long
As of 2021, the organ with the most patients waiting for transplants in the United States is kidneys. The average time patients spend on the waiting list for a kidney transplant is two to three and a half years, and patients almost always need to be on dialysis during this time frame. With so many people waiting for kidney transplants and so much time to wait, the outcome can look grim. Aside from these disappointing statistics, there is a lack of awareness and stigma surrounding organ donation that make finding a donor even more difficult.
We don’t know how to talk about it
As a society, we don’t talk about organ donation enough. And when we do, we often use uninformed language. Studies show that lack of government sponsored incentives, fear of procedural delays and inappropriate counseling for deceased donation are among the reasons for poor organ donation rates in the United States. When we don’t know enough about a topic, we can’t make an educated decision, and this is part of the overlying problem.
There’s stigma around organ donation
Most Americans have had the experience of choosing whether to become after-death organ donors when renewing their driver’s licenses. In this scenario, people tend to opt in and then later opt out, changing their minds over the years in between license renewals. And for those who don’t have a driver’s license, there is no way to legally state that you want to be an organ donor after death, unless you have a written will, a healthcare proxy, or are registered on an organ donation list. Family members can also put pressure on each other to opt out of organ donation based on perceived stigmas or from cultural and religious beliefs. Beyond cultural norms, if people remain uninformed and don’t know what organ donation truly entails or the benefits it can bring to those in need, they are less likely to become organ donors or to encourage others to become donors.
Living donors experience the same lack of awareness and stigma. Studies show that 84% of organ donors fear experiencing social stigma because of their kidney donation – this huge number reflects how the majority of the population feels, and this indicates that as a society, we aren’t offering the knowledge and resources people need to understand and accept the need for organ donation.
So, what options exist to help us cut through some of these challenges? It starts with finding and harnessing the right data.
Which Healthcare Data Can Help?
There are two main sources of data that are needed in order to find the right organ donor for a patient.
SDOH are the non-medical factors that influence healthcare outcomes. They include the environment where people are born, live, learn, work, play, and age that affect a wide range of quality-of-life functions and risks. They include things like economic stability, education, neighborhood and environment and social and community context. These conditions play a huge part in a patient’s life and can assist in the prediction of certain types of illnesses.
SDOH information, such as race and ethnicity, may help with the identification of groups that are underrepresented in organ donation or in need of an organ. In addition, knowing SDOH among organ donors can help us understand the differences that account for being a living versus a deceased organ donor.
#2 – Comorbid conditions
Comorbid conditions are more than one condition or disease that is present in a person at the same time. Conditions described as comorbidities are often chronic or long-term conditions. It’s imperative to have data regarding comorbidities in both organ donors and patients because this information can help with stratification of patients based on illness severity and other risk factors.
Some conditions make living organ donation a higher risk. People with underlying medical conditions who are interested in becoming a living donor need to speak with their physician to discuss risks.
Using Healthcare Analytics to Navigate Transplant Challenges
Healthcare analytics platforms are increasingly being used to organize and harmonize the above kinds of data creating databases of potential donors and recipients. The information captured in these data sets are used by transplant centers and coordinators to determine when an organ becomes available and who is the best match as a potential recipient. Additional information on blood types, serum makers and other clinical parameters give medical facilities and health care personnel (HCP) access to patient information, making it easier to make decisions regarding patient care.
PurpleLab has access to medical, pharmacy, and patient demographic information. Our platform, HealthNexus™ is able to take this information and look at specific medical conditions, pharmacy information, and the providers treating the patients. HealthNexus is a HIPAA-compliant platform that allows organizations to systematically govern and manage medical data. The platform’s on-demand access and robust reporting enables deeper and more precise real world insights and outcomes across patient, provider and payer populations. HealthNexus can codify medical data into one language so you can enhance your internal analytics. Our platform is backed up by a group of clinical experts, biostaticians and data analysts, so if you have questions, there’s guidance readily available..
With HealthNexus, the specific patient information is never identified, only the patient SDOH attributes are linked to the medical and pharmacy claims information. For example, when looking at patients receiving a kidney transplant, we can see that the highest prevalence is for individuals between the ages of 60 and 70. In addition to this, the healthcare platform allows for further investigation with regards to the patient’s medical diagnoses, the geography of the patients, and SDOH information at the population as well as individual provider level. Using HealthNexus can help you leverage organ donation data easily and quickly, providing insight about both patients and donors.
This graph shows HealthNexus data regarding kidney transplants – most people who need this transplant are males ranging from 65-69 years old.
August is National Donor Minority Awareness Month. Why is This Important?
It’s essential that people of all races and ethnicities have access to organ donation. There are some inherent differences between all races that cause some people to experience higher rates of specific diseases. For example, African American people have higher rates of diabetes and high blood pressure than the white population, and these conditions are known to put patients at risk for organ failures. And in 2020, 83.6% percent of donor organs from African American people were from deceased donors, indicating that the number of living donors is low, especially in this race group. Unlike most data sets which do not include SDOH information at the provider or patient level, HealthNexus is able to show this type of information for both patients who received a kidney as well as the donors.
Raising awareness around organ donation can greatly improve these statistics, making kidney transplants and similar procedures more readily available for all ethnic groups and ultimately saving lives.
Healthcare analytics is a powerful tool that can help connect transplant patients with the organs they need. While we make progress with healthcare data, it’s still important to create awareness around organ donation and lessen the stigma. And if you are considering becoming an organ donor, your decision can make a difference in as many as 50 lives. Please let your family know when you have made this important decision so you can celebrate accordingly.
Contact us to learn more about HealthNexus powered by PurpleLab and to see how our platform can help you manage and use your healthcare data.