In my previous post, I’ve spoken about how primary care physicians need to improve their self-esteem when it comes to demanding fair reimbursement for their services as well as being leaders in health IT and health care data for the future. Why is the second just as important as the first? Other than money (which is fairly obvious), owning and controlling your data is one of the keys to exerting influence and making significant and sustainable change in our currently bleak situation for primary care and private practices. Let me explain.
Data is knowledge. How data is collected and interpreted and then used is one of the most powerful forms of communication and human interaction. Just look at Google. They are the technological masters in data collection, interpretation, and innovative users of this data. Without their obsessive data gathering tools, we wouldn’t have tools such as its search engine or Google Maps. The integration of their data makes it the envy of all other internet-based companies. The reason why Apple Maps was a pale comparison to Google Maps is due to this one factor alone: Apple didn’t have the infrastructure and data that Google had carefully amassed years and years ago. Now one thing that does frighten me about Google is that all this data is held by one organization/corporation. We trust that they don’t do anything nefarious to the data that they have and use (but on the other hand, it’s foolish to believe that this could never happen). I’ll discuss more about this later.
Now, when it comes to health care, we must ask ourselves who is driving the data gathering and how it’s being used. Back in the “good old days”, physicians gathered the data, jotted them down on a piece of paper, organized them by patient to be used later on when a patient comes back for a re-evaluation. The data was singular, local, and relatively secure (I call them silos). Perhaps back in the those times, this type of data collection was sufficient because there was not as much travelling and moving for families and most patients went to their general doctor since there were not that many specialists to go around. Fast forward to now and we see a substantial increase in subspecialist health care providers (due to our perverse payment system) and patients are seeing not just one doctor, but most likely two or more. With data still in silos (both in paper and electronic format), we start to see the inefficiencies and consequently errors and reduplication of efforts to gather data from one provider to another. This further fuels the increase in health care costs (duplication of tests, for example) for the patient and society. It also decreases safety (drug-drug interactions and allergic reactions, for example) for the patient.
As technological advances accelerate in these times (like Google, smartphones, social media, cloud computing), health care can no longer ignore the impacts of electronic data. While it used to be that physicians were in the driver’s seat regarding data formation, gathering, and use; over time, physicians have abdicated the ownership and use of electronic data to other agents that seek to impose mandates on care and how care is to be delivered, often to the detriment of the physician and patient. These agents include insurance companies, governmental agencies that monitor reimbursements and incentives, and administrative bodies that determines productivity and pay for the physician. As you can see, these agents control the flow of money. Although I cannot blame these agents for what they do, and I suppose they are serving some useful purpose in the framework of “controlling” health care costs, I sense that the US health care system is now entering a situation where these agents are now defining how health care is to be delivered, to the point that if these agents wanted, they would do the work that physicians used to do, like determining the type of tests or medications to be performed on a patient, and even establish a diagnosis. These agents are now literally making clinical decisions that directly impact patients.
If the work that physicians do is really all about rigid clinical decision algorithms and purely calculated on cost analysis, I might as well hang my stethoscope out on the porch and say goodbye. I don’t know necessarily what has happened (possible media/TV show representation, but also the existence of rapidly advancing biomedical technologies) , but there seems to be a mistaken notion that medicine is all about science and technology. I would argue that medicine is still very much a 50/50 split between the “art” and the “science.” And as we know more about the effects of trauma on the brain’s neurodevelopment and the subsequent impacts of a person’s health, I would argue that this is even more salient. These agents are not even face-to-face with the patient, let alone talking to them. They just calculate the diagnosis and treatment based on data that physician’s gather (accurately or otherwise) to determine our worth. This is what all these “pre-authorizations” are all about. From a business perspective, this may sound reasonable to manage the bottom line, but from a medical perspective, I don’t think this is humanly fair or ethical. I feel a professional line has been crossed when the use of our data is used against us and the patients we serve.
And the race to control and gather that electronic data has already begun. We have large vendor EHR’s trying to monopolize their share of the marketplace, keeping their data proprietary and even take them as hostage for physicians who want to switch systems. We have insurance companies savvy with electronic data gathering through our current billing process to effect our clinical decision-making (pre authorizations) and threaten us with auditing and at times, taking away our reimbursement right or wrong. We have our government, also savvy with electronic data gathering, now requiring us to enter another set of data that has no impact or meaning whatsoever on our clinical care of patients, just so that we can “possibly” recoup the enormous cost of these EHR’s and if we don’t play along, we get paid less. The more I see it, physicians in general have allowed our control of data slip away and we (physicians and patients) are now paying the enormous price because some of us decided to put our heads in the sand and pretend that we don’t need electronic data to keep our profession going in the future. And in the end, we are not furthering our cause for keeping our patients safe and healthy because we refuse or unable to share data with other medical providers even if we have the electronic tools to gather data effectively.
The health care landscape from a primary care perspective may look bleak, but I believe there is still hope. The hope comes from these same primary care and private practice providers that remain steadfast in their belief to provide direct, meaningful care with their patients. The hope comes from those that have exited the field out of frustration and burnout or have been incorporated by a larger organization but are keeping one eye out to see if a better future remains for our health care system. Along with hope, we also need the right tools and organization to get us out of this bleak landscape. It is indeed a critical time to act.
This is where an open source electronic health record system coupled with a patient portal system is the gateway towards true interoperability. I emphasize that this is only a gateway and not a panacea to all that ails our health care system. An open source community allows doctors to have a say in what would make their system usable and customizable to work the way that clinicians work, not based on the needs of administrators, insurance, or a government mandate. It is chance for doctors to feel engaged in the process rather than feel left out. We can make our voices heard when we have the numbers and our public support behind us. It is the opposite of the top-down approach to change governed by who has the most money. Instead, this approach is a thriving, grassroots effort, united with our patients, that is governed by who has the means to gather, integrate, and use electronic data to improve the health of our society. It is really the only way when primary care and private practice physicians do not have the money and means to organize.
On data ownership, one of the reasons I chose to create NOSH ChartingSystem as a web-server based model and that it can be easily downloaded and installed on any desktop computer or installed on a virtual machine or in a cloud is that the data ultimately belongs to the physician or group of physicians use it. Several individuals who had interest in NOSH ChartingSystem stated that it would be great if I could provide a hosted program on the cloud (similar to Practice Fusion or other web-based EMR’s), but I’ve decided against it. I have no interest in storing centralized patient data from thousands of providers nor does it benefit the provider when it comes to security and safety for the patient. What would happen if the owner of this centralized patient data goes away? Outside of the health care sphere, there is increasing appeal for a de-centralized form of social media and data storage rather than leaving the data to only one organization for exactly these same concerns. Health care ought to be the first to venture in this new type of data framework and focus on interoperability of data technologies rather than centralizing data to only a few.
I propose that this is where the discussion can start, whether it be what you’d like to see in a physician usable EHR, or what it means to have true interoperability. If we can demonstrate that this cooperative model works for health IT, we could be the model of a future in healthcare, where patients and physicians are partners again and no longer divided.