Data brings knowledge and knowledge brings power, so data brings power. This is true in most areas of life, including healthcare. Though I am not a statistician or data scientist, my clinical perspective of 25-plus years working in healthcare has helped me recognize the tightrope along which health information travels.
Doctors are risk averse. I hear this all the time in healthcare, and it makes sense. We took an oath to “do no harm” to our patients. The laws that ensure the privacy of healthcare information are rooted in the concept of doctors not harming patients. Health information in the wrong hands can lead to discrimination against people with certain health conditions; or, perhaps, the information could be manipulated by those who stand to gain power or wealth from it. One solution to help protect patient data has been to “deidentify” individuals’ health information to allow researchers to look at populations. This is great for healthcare overall, but the individual patient still does not reap all the benefits that would come from consistently tracking and sharing their information.
So why not just give the patient a data folder and add to this folder as the patient moves through the system? The first reason is that the patient needs to own the folder to maintain control of their healthcare. But who pays for it? Many patients either cannot afford or would not be willing to pay for an expensive electronic health folder. Healthcare systems and providers have tried to overcome this hurdle by allowing patients to access their healthcare information through electronic portals at no extra cost. This is helpful for providing specific information about what happened during a single healthcare interaction, but to do this every time care is received in every different system where it’s received is time consuming and inefficient.
Second, who determines the format of the folder? Who determines how information is stored and shared, and what can be shared with which parts of the healthcare system? Ideally, the patient should control what, when, and how information is shared. But teaching every patient how to share what they want, how they want it, and when they want it from an electronic folder is simply unrealistic.
Also, healthcare entities recognize that data is power. Each uses the data’s power both to help their patients and to improve their own healthcare delivery. This makes sense in a free economy but is naturally at odds with creating information consistency for the patient.
Third, the laws of health data exchange can only go so far. Over my years in healthcare, Health Level Seven International (HL7®) interoperability, Office for the National Coordinator (ONC) for Health Information Technology (IT) Certification, Meaningful Use, Health Information Exchanges, Fast Healthcare Interoperability Resources (FHIR®) standard, and Information Blocking Rules are just some of the initiatives that have worked to smooth out the bumps along the health information tightrope. While these help each entity to do its part along the healthcare continuum, there is still no universal personal health record that can meet all the needs of every patient. Balancing the individual’s control and the privacy of their own healthcare information within the free economy of healthcare entities continues to bring this tension.
But there is some good news. Many organizations are working not just to adhere to the rules of better health information sharing but to go the extra mile to bring health information together for each patient in a meaningful, useful way. Veradigm’s portfolio, such as Practice Fusion, Veradigm EHR, and Veradigm FollowMyHealth, are designed to gather each patient’s health information in a timely, understandable, and meaningful way that individuals can access where, when, and how they want. These offerings are free to patients and are constantly being improved with patients as the focus. Though not every patient goes to a provider currently using these products, hopefully we will see a universal personal health record in the near future which every organization can adopt.