With the recent legislative enactment of the 2016 Cures Act, I personally have received several comments and concerns. On the surface, the concept of information transparency is paramount as we move towards a more consumer-driven approach. As a patient, I should have immediate access to my information since it pertains to me and I wish to know what the healthcare provider has written and also verify that it is correct. However, when it applies to clinical situations, an explanation might be necessary concerning the next steps. Unfortunately, timing becomes a limiting factor and may lead to patients seeing their information prior to an appropriate discussion with their healthcare professional.
On one level, transparency will improve the quality of care delivered. Moreover, patients are an additional set of eyes to close the holes in the “Swiss cheese,” possibly avoiding results slipping through the cracks. Furthermore, patients may discover mistakes and critical information, perhaps forgotten at the time of a visit, or even missed, thus allowing them to alert the healthcare professional, thereby creating a more robust picture of a situation an opportunity for two-way communication. Also, medication updates may become easier, thereby leading to improved care and avoidance of adverse outcomes.
Unfortunately, any change may also have unintended consequences. There is a concern that patients viewing information without explanation may lead to increased anxiety. On the other hand, one might argue that this will lead to improved communication, which can be considered positive.
Unquestionably, I support the concept that transparency improves care, and that information belongs to the patient. My concern is where this may lead us? The next set of questions will include who has the right and ability to add information or change it? What if I notice that the record is incorrect or do not want certain information in my file? On one level, since it is my information, I should be able to edit and only allow what I want to be a part of my record. Unfortunately, this has the unintended consequence in which professionals are missing critical information that impacts interventions and treatments. And taking it a step further, depending on my disease state it may be harmful to me if not all the necessary information required to treat me is in my file.
We must wrestle with these foundational questions and operational situations as we move forward with transparency and consumer-focused information sharing and care. There needs to be a record of “truth,” and we must decide who is the final arbiter of this “truth.” Do we create a situation where a patient sends their updates and corrections or, perhaps, “allow” them to edit a document? How will version control be managed?
Regardless of the outcome, we must begin somewhere and have a shared premise of the picture of success. Having a more robust record with the correct information and seeing it in a timely manner will only improve our knowledge, thereby leading to improved care. Professionals and patients will now become better partners in information sharing and understanding. However, it’s imperative to be careful not to create situations where such information becomes lacking in crucial facts that are necessary for the delivery of optimal care. Let us not avoid these conversations and puzzles but instead work together to create a model that enhances care and patient interactions.