As the practice of medicine has become more sophisticated, complex and subspecialized over the past fifty years, so has the confusion and misunderstanding surrounding patient care. A survey by the electronic health record company Practice Fusion found that the average patient now sees more than 18 doctors, including specialists during the course of their adult medical care. For this reason, “care coordination” has been a longed-for goal by health reformers. The Agency for Healthcare Research and Quality defines care coordination as:
“…deliberately organizing patient care activities and sharing information among all of the participants concerned with a patient’s care to achieve safer and more effective care. This means that the patient’s needs and preferences are known ahead of time and communicated at the right time to the right people, and that this information is used to provide safe, appropriate, and effective care to the patient.”
Interestingly, all of the efforts so far have been to facilitate communication among practitioners, and very little has focused on elucidating the patient’s “needs and preferences”. Kaiser and the VA are great examples of what a vertically integrated system can do with a coordinated electronic health record (EHR). The physicians all work for the same health system and are incentivized to work together and they use the same Electronic Health Record. Even though these doctors can communicate in a coordinated way on their electronic health record, there is no evidence that Kaiser or the VA is doing any better than anyone else at discovering and documenting the patient’s own “goals of care”, or that the patients themselves have a better understanding of their options.
What is the answer to coordinated care? It is not the electronic health record (EHR), although the EHR is a valuable tool. To achieve real care coordination, patients must come to the table prepared to have a conversation with their medical team about their goals, values and beliefs in order to create a care plan that is appropriate for them. Ideally, that is facilitated by a primary physician. At the very least, each doctor visit should be an opportunity to revisit these goals and interpret recommendations in the context of achieving them.
To achieve real care coordination, patients must come to the table prepared to have a conversation with their medical team about their goals, values and beliefs in order to create a care plan that is appropriate for them
While the medical system can track all the diagnostic codes, prescribed medications and physician consultation notes, ultimately, it is the patient and their family that must keep their eyes on the ball to ensure coordinated care. This means being organized, having access to their own records and being willing to ask questions. Also, patients and their loved ones should be ready to discuss difficult things such as tolerance for aggressive treatments and life support, financial capacities and preferences for care at the end of life.
…ultimately, it is the patient and their family that must keep their eyes on the ball to ensure coordinated care
Medical systems owe patient and families the tools they need to stay on top of things, such as education materials, organizational tools and forms and access to their medical records online. However, it is the patients and families themselves that have to gauge whether or not they are getting too much care, too little or the right amount to achieve their goals. The age of paternalism in medicine is over. Coordinated care means empowered care, and ultimately, that is up to the patient or the person making decisions for them.