I was just reading an article speaking to problems related to the entire approach of evidence-based medicine [EBM]. EBM is considered the most effective way to achieve results in the medical world. When faced with a patient who has a specific condition, it is understandably appropriate to review the research as well as the guidelines for the given condition. If a physician bases treatment solely on personal experience or intuition, it becomes primarily a game of chance as to whether the provided treatment will work. Anecdotes and even decades of experience have been shown to be lacking when put to the test in comparison to controlled studies.
Whatever problems may exist with EBM, it’s the best we have for now. I’ve written before about the potential for wearable technology to generate sufficient data to allow for a fundamentally different approach to identifying the cause of a medical condition. Data from wearable technology would also allow physicians to track the response of a specific patient to a provided treatment. This is the foundation for personalized medicine and is the next phase after EBM. I would be surprised if this post EBM reality is not in place by 2020. And I hope that patients will quickly begin to benefit from the enhanced capabilities of personalized medicine.
One of the issues raised in the article I noted abive, had to do with lack of access to the entire data sets generated by all of the research that is done on a day-to-day basis. These data sets are important for a number of reasons. First of all, they provide a way for other investigators to validate the conclusions of the primary researchers. Also, it may very well be that there is more to be discovered from the data, than the original researchers looked for. Ideally, every data set from every study whether successful or not (because usually non successful studies do not get published), would be stored (after removing personal data) in a single location with access provided to all. This would allow for a whole new level of analysis made possible by revisiting existing data. It might very well be that two separate studies that at first glance have nothing to do with each other, generate data that overlaps. In other words, by collecting all of the data sets and making them available for review, new correlations and new groupings might appear. Critical conclusions about better healthcare might very well be hiding in disparate silos of research data.
In another article that I recently read, it was noted that attempts to improve patient care were being limited by the lack of sharing of medical information amongst healthcare services. Worse, the reasons for this lack of sharing had more to do with business competition and profit rather than any consideration of the patient’s welfare. Although the clinical data that is gathered during a patient’s assessment is not initially intended for research, it is still clearly important for there to be sharing of information and access to the complete patient profile, in the hope of achieving the best possible outcome. Such sharing can be the difference between life and death when a patient does no more than travel between hospitals and more so, between states and countries.
The common thread between these two data collection situations is transparency. What is presently happening is that information is gathered by a particular interest and it is not made available for review by other interests. While it is clearly necessary to enforce all of the necessary security and privacy in order to protect the data from leaking out, the lack of transparency has nothing to do with security or privacy. The driving force behind the shortsightedness of the data collectors, unfortunately, has much more to do with personal professional status, financial benefits, egos and other less than complimentary issues.
What is so upsetting about all of this is that it stems from a fundamental lack of appreciation of the fact that data collected about a given person should belong to that person. Even if an individual is part of a research study, there is no good reason why the data collected about that individual should not be made available to the patient and central research groups, at the very least, after the study is completed. If an individual has been under close scrutiny for a year of a given study, there is a tremendous amount of information that has been collected that could very well be important in future healthcare decisions. Something as simple as an EKG that was done as part of a research study, could end up being critical when making decisions about the patient’s cardiac status during an episode of chest pain.
For unfortunate historical reasons, there is a myth that has been perpetuated – specifically, that patients are somehow the property of the healthcare system and have no rights within that system. Until this attitude changes, probably by force of law, we will continue to struggle with accessing data that is critical to the welfare of each and every patient.
Until very recently, collecting all of this information was not even practical, as there was no place to store it and no way to analyze it, for any reasonable price. It is truly just within the last couple of years that relatively inexpensive (if not free) options are available for handling all of the data that is being generated about the health of each and every one. Understandably, it does take time for large systems, like the entire American healthcare system, to adapt to new conditions. But it is not acceptable that years should pass until data transparency becomes the enforced standard.
Professional journals could easily help solve this problem by demanding that researchers post their entire data set before having their work published. Almost overnight, this would flood the medical data world with a tremendous amount of raw material to work with. Legislation also has to force major EMR companies to create simple tools for sharing collected information. Ultimately, every piece of data collected on an individual from any source, should flow to a single repository specific to that individual. Of late, Apple’s contributions in the form of HealthKit and ResearchKit, might be that repository. But it should not be long before other companies offer equivalent unified data stores that are accessible at all times from anywhere.
It is by no means an exaggeration to say that people will die if data is not allowed to freely flow amongst those professionals who could use it to improve quality of care. Personal considerations have to be put aside, and the welfare of the patient has to become the utmost purpose for researchers and clinicians alike. We are very close to experiencing a new age of knowledge that will come from data that we collect. But this will only come to pass when everyone understands that we all must share so that we all may benefit.
Thanks for listening