The Linchpins to Real-World Data

by: Rebecca Owens

?1 in 6 of Publication Series

Real-world data (RWD) is data in real time as a patient is being consulted and cared for by their physician. If RWD is the modern day ‘gold rush’ then healthcare stakeholders are going to have to develop innovative ways to partner with physicians. For more than a decade the healthcare industry has focused on ‘big data’, ‘real-world data’, and now the value of ‘data’. Discussions on utilizing patient data are in every conversation from boardrooms to patient exam rooms. What is so evident is that there is an entire healthcare industry that wants and needs to get their hands on complete patient data sets as we seek to innovate therapies, testing, procedures, devices, and overall care. On the flip side, healthcare stakeholders have severely struggled with obtaining quality and complete, “clean”, data that can be utilized for discovery and innovation.

Just as a linchpin keeps the wheel on the axle; I would like to propose that physicians serve as the linchpin in healthcare. Furthermore, they are the individual most qualified to provide clinical data from the immediate physician and patient consultation. I am intentionally setting aside the amazing care teams that support the physicians; it is without a doubt it is a team effort. The license of a medical doctor is what puts them front and center with the patient. Yet, as new ideas and solutions are built, physicians are often forgotten about. What often gets missed are the variabilities in clinical environments, unique workflows, patient demographics and care needs, physician experience with latest technology and trends -to name a few. The patient to physician relationship is unique in every scenario and the moments at the ‘bedside’ are the most valuable moments for a patient; thus making it extremely challenging for the physician to turn away and record the key data points most necessary for advancing science. Not to mention the privacy of such interactions, which deserves a stand-alone written article.

Point of care solutions, at the ‘bedside’, are in high demand; yet the healthcare industry has become buzzed on the promises of data science technologies like Artificial Intelligence (AI) and Machine Learning (ML). Massive monetary investments are being placed into companies developing such tools, in hopes that they are the panacea to healthcare predictions. While they have shown early promise, we seem to be losing sight on the need for solutions at the bedside where the data is most useful for analysis downstream. RWD will continue to be incomplete, “dirty” as we often call it, unless our healthcare linchpins are enabled, engaged, motivated, and empowered to provide the necessary data that is needed to advance scientific discovery.

A great analogy is like the ‘field of dreams’ and “if we build it - they will come”. I wonder sometimes about the millions of products and billions of dollars spent on products and solutions that physicians simply cannot use and/or will not use. I have often wondered if we could just build solutions to take care of the ‘ultimate caregiver’; what would that look like? I mean, I get giving them a yoga retreat is out the window. Joking aside - Our nation complains about how much money doctors make. We have made their jobs more challenging by implementing regulation after regulation, healthcare reform, Meaningful Use, Pay-for-Performance models, Quality Metrics…and the list goes on. None of which have been straight forward or easy to implement; rather quite challenging, distracting, and cumbersome. Components of such programs have shown to be beneficial but all the while creating more work for the clinic, time away from the patient, and unsurmountable frustrations that have left our metaphorical linchpins unwilling to provide more information without substantial incentives to do so.

The linchpin keeps the axle in place in order to move the vehicle forward. An engine alone will simply not get the car to move. The all too critical linchpin, the physician, not only cares for the patient in the clinic, but they too are a vehicle to new discoveries in medicine. If we value the data as gold for scientific discovery, which it undoubtedly is: what will it take to assist physicians and patients to seamlessly provide meaningful data that can be used to advance clinical care? When will we be able to say that data is also being acquired fairly and ethically? Yes, fairly! Not surreptitiously taking data from patient records. Not arguing about ‘who the data belongs too’. Not meaningless solutions that only create more work and no additional benefit but to the solution provider themselves. Simply, relieving the physician of administrative burdens and empowering them to ethically capture the data elements most valuable to advancing science.

We have spent several years analyzing this conundrum and it is most relatable to the Rube Goldberg machine -a machine intentionally designed to perform a simple task in an indirect and overly complicated way. So many players in the healthcare ecosystem and the never-ending evolution of science only creates more complexities for clinicians. Simplifying things sometimes is the best first step to solving some of the most complex situations. We must analyze what we are asking from the physician, understand what they are capable and willing to do, and build from that knowledge. If the linchpin is broken, the wheels on the bus will simply fall off. How long can we push and pull until the linchpins of healthcare begin to lose motivation, give up, and/or simply quit? The Association of the American Medical Colleges predicts an approximate shortage of 122,000 physicians by the year 2032 in the United States. This prediction did not take into account the latest political upheaval of COVID -19. One might extrapolate that the shortfall could be even greater after watching our country manage the crisis.

We often hear “patients come first” and that is the absolute truth. Behind every patient is the licensed doctor and their care team. The patient data generated along their care journey, the RWD, will continue to prove challenging to acquire within the Rube Goldberg machine of the healthcare system. It is our responsibility, as innovators, to empower physicians so that they are willing to engage in solutions that will ultimately gather the data needed to advance medicine. More regulations, more paperwork, more inefficient solutions, less reimbursement, and sequestration of patient data will only create greater divide within a healthcare system that mottos “patients come first”.