It is hard to understate just how much of a currency data has become in medicine. Whether talking about evidence-based medicine, precision medicine, or genomics, the ability to collect and distill data into information, transform it into knowledge, and use that knowledge to drive effective action is at the heart of what modern medicine seeks to accomplish. The centrality of data to this process has created well-entrenched stakeholders, which is why it comes as no surprise that the conversation around open sharing of research data following publication has shifted into controversial territory.
It’s widely recognized that health care must change. Paper charts are still commonly used, providers communicate via fax, and patients wait weeks for an appointment. Given the recent excitement around health information technology and the unusual political will, it may seem not only that health care is ripe for disruption, but that it may even happen.
Or will it? Disruption is one of those “know it when you see it” kind of things. By lowering the costs of distribution for content providers, the Internet, for example, has unmistakably changed, and continues to change, the media industry. Or, if you don’t like that, you can try wikipedia’s take. There is a lot about health care that feels like pre-Internet media: insular, capital-intensive, multiple stakeholders (read: middlemen). And so, it feels as though health care will be disrupted, but where and how can that reasonably happen?
When people get sick, they have several options for obtaining health care. These include going to the emergency room, urgent care center, or calling a doctor or nurse. However, 80% of people experiencing symptoms start with an Internet search. Unfortunately, searching on Google offers spotty results and frequently leads to undue concern. For example, one is 1000x more likely to encounter “brain tumor” in web search results for “headache” than they are to ever have the disease. Undue concern is a contributor to the 40% of emergency room visits and 70% of physician visits that are considered to be inappropriate.