Why HIPAA doesn't always provide the best outcomes:
Confidentiality is not all that it seems. I have a love - hate relationship right now with confidentiality or otherwise known within the medical space as HIPAA (Health Insurance Portability and Accountability Act). This US law, enacted on August 21, 1996 was designed to protect a patient's medical records or other health related information. When HIPAA was established, one goal was to protect the safety and security of individual health information.
As a medical professional working in the hospital healthcare setting for over 10 years, I fully support HIPAA and confidentiality. I understand the impact and importance which HIPAA provides not only for the patient but also for their loved ones. Some patients simply don't want to share their diagnosis and/or prognosis and I strongly support empowering patients with their decision-making. I see HIPAA as an effective law within the hospital and patient settings.
In addition to my professional background, I'm personally affected by HIPAA. As a patient with an inherited cardiovascular heart disease who has an extensive history of surgeries and multiple pre-existing health conditions I fully understand the important of keeping my diagnosis personal to the level of my choice. When I was initially diagnosed at age 23, I didn't discuss with my employer my health status as there were no functional limitations I had at that time. When applying for my master's degree, again without limitations I choose to keep my diagnosis separate from my professional aspirations. I see HIPAA as an effective law within my personal and family's space.
But while HIPAA is effective within the hospital and patient settings, confidentiality has a significant and mostly negative impact on our community at large relative to why we need life-saving heart defibrillators (AEDs). As an executive director of a local nonprofit we are fighting an uphill battle without knowing the direct impact and usage of AEDs in our cities, our schools, and our community. Success of sudden cardiac arrest victims is strongly assocated with access to defibrillator devices and time with which they are used. Until we secure accurate data insights about AED usage we continue to keep success at a minimum. The actual success rates of SCA survivors have been unchanged since the 1960s and yet we have a cost effective medical device which could increase our survival rates up to 80%.
According to the CDC, the incidence of out of hospital cardiac arrests (OHCA) in 2015 was a staggering 357,000 people in the United States. Given that approximately 70-90% of individuals with OHCA die before reaching a hospital, could you imagine the impact of lives saved if there were readily assessible AEDs. And, for the economic and social impact, accordingly to the CDC, we could gain 3.3 million years worth of productive lives.
So how can we balance the dichotomy between patient confidentiality and the impact of data we need to support our mission. While we could extrapolate AED usage by looking at data one city at a time, that data remains vague and incomplete at best. Simply put, knowledge regarding AED usage is largely unknown. This knowledge isn't fully tracked by the manufacturers, the vendors, nor our government departments. And when tracking is done, the community doesn't learn about most successes due to HIPAA. We value confidentiality and the associated law relative to HIPAA as primary but we must strongly advocate obtaining critical non-intrusive data points which may have a significant postive cost impact for our society at large.
Here are the steps I think we need to take: While the EMS and healthcare space continue to evaluate response times and/or patient cognitive outcomes after experiencing a SCA, I think we should also evaluate AED usage data. Simple yes/no answers could be obtained which indicate that an AED was accessible and an AED was used. We don't need to know the name, age, gender/non-binary, or economic status. We don't even need to know if the event was an SCA or from a secondary medical source. What we truly need to know is when an AED is used outside a hospital setting.
With this data knowledge, we could share with our community the important of AEDs and thus correlate any success rate changes. Stories are powerful and persuavsive. But, without historical data we will continue to see flat results in the success rates associated with SCAs.
In reality, heart health and safety lose out due to the current status quo surrounding HIPAA. And while there are cost/benefit rewards to everything in life, I strongly believe that the cost of not having the data is greater than the confidentiality it protects as a whole.