Why is it essential to maintain Transparency while protecting Patient Privacy?
Originally Published by Illumination Curated on Medium
Knowledge and information are power. Amid most other types of leverage an individual can possess, the Informational Power- is the most transient and susceptible. Once we relinquish our information, so we do give away our potential. Of course, we also understand that we must too be willing to share our valuable information and knowledge for us to thrive. Then comes the question of when, how, and in exchange for what!? — To answer, we must also understand the differences between confidentiality, privacy, transparency, and personal exposure.
Knowledge and information are two assets that hold quality and value. Historically, the human being has been able to harness the importance of education and return the benefits to the individuals but with restrictions and monopoly of the licensing scheme. Nonetheless, it is still a step towards giving back the power of knowledge to the owner. Unfortunately, we can say that about raw personal data, in this case, patient and physician information. Let us clarify that the latter is exclusive of medical service delivery, which carries its own set of monopolistic obstacles.
The way physicians reach a clinical judgment (also called clinical decision-making strategy) utilizing their knowledge and experience in conjunction with how a particular patient responds to that decision, thinks and believes- are invaluable assets. Here we collectively call them health information, health data, or medical data.
The owners of health information are the holders of informational power. However, with today's environment riddled with corporations, entities, or people with other forms of "power," it is becoming even more challenging for constituents to protect their property, thus sovereignty. A few examples of such overriding "powers" are- coercive, referent power, and the power of legitimacy.
Privacy is the Inherent Human Right
Many international organizations recognize privacy as a fundamental human right, including the United Nations (UN) as the Declaration of Human Rights, the International Covenant on Civil and Political Rights, and many other international and regional conventions.
Privacy underpins human dignity and the key advantages such as freedom of community and freedom of speech. Confidentiality Beliefs are sturdy and are one of the most critical human rights arguments of our time. Privacy is vital for many reasons, such as the consequences of not having privacy.
Photo by Campaign Creators on Unsplash
People can be hurt or enfeebled if there is no oversight of the public's access to personal data. Other reasons are more fundamental, touching the core of human individuality. To lose control of our personal information is like giving away control of one's life and dignity. Hence, even if we consider privacy not a fundamental right, it is still essential to protect other fundamental privileges. Until the advent of Big data and Deep Learning capabilities, safeguarding personal information was much more comfortable than today. Nevertheless, with the expansion of sophisticated technologies- information privacy has turned into a whole new challenge.
Protection from the Misuse of Personal Information, Privacy and Relationship, Autonomy, Human Dignity, Privacy, and Power represents components of an individual that can have harmful upshot if evaded.
Privacy within the context of power, in particular, is even more crucial as a safeguard of freedom in the associations between individuals and groups. Thus, any form of monitoring and publicity are potent instruments of the social curb.
The deliberate invasion of the individual's shield, his psychological guard, would expose him to ridicule and stigma and put him under the control of those who know his intrigues.
If individuals realize that their actions and dispositions are continuously scrutinized, remarked on, and decried, they find it much stiffer to do anything that varies from condoned social attitude. Under such a scenario, there does not even have to be an explicit threat of retaliation because Visibility itself furnishes a powerful method of enforcing norms. That is why most people are worried about standing apart, to be distinct, if it means being subject to exploitation. Under such circumstances, people find it better merely a power to conform to the surrounding environment.
Confidentiality, Transparency, and Personal Exposure
Confidentiality is the state of protecting or being kept secret or private. Any standing contrary to the latter refers to the conspicuous individual's disposition. Although for many being apparent, it merely means exposure; however, it is not that simple. For instance, transparency can develop trust amongst individuals and be a source of empowerment if rendered because openness is about something being done- or the quality of being done openly without a hidden agenda. The latter has different meanings within the frameworks of various domains. For example, as employed in science, engineering, business, the humanities, and other social contexts, transparency pertains to the conduct. It is easy for a bystander to discern what actions were executed. Or for media- transparency comprises the concept of defining how and why information is conveyed through different means.
Exposed personal information, contrary to transparency, is an unhealthy yet objective percept of personal information exposure. Exposure and invasion of privacy are often non-voluntary; in contrast to openness, the latter is somewhat relevant. Confidential personal information is a must; as much as transparency is a virtue, it is voluntary. That is why personal data is Informational Power. Hence it is the most fleeting of all abilities. Therefore, once given up or stolen, likewise, we give up our sovereignty.
The Current Shifting Trend of Power from the Individual to Corporations
Personal Data, health information, and knowledge fuel any business, particularly in a competitive environment. More entities know about us and further tap into the unlimited data resource, the more coercive and referent power they will gain, which will give them even better opportunities to access public information. If tapping into the everlasting fuel of data through "DATA MINING" was something they had to pay for would be one thing. But today, entities are freely collecting private data without spending a dime. Instead, they invest in the technologies to fulfill their mission and in the government, lobbying programs, and taking advantage of legalized kickback policies. That is merely suggestive of one thing; that is shifting power from individuals to corporations.
Today, the Public must be the Healers of the Damages caused by ingenuousness towards Corporations.
Once the power of information is lost- it is a common perception that it will never return. But there is also a famous saying- Turning around from the middle of the loss is always again!
Indeed, the damage is done, and people lose their leverage to the corporate sphere. But it is not too late to seal the leaking hole on the sailing ship and make it better. And if you ask me how to do it- I will start by saying claim the ownership of your data and personal information.
While in that mindset, you must also understand that you can never be the owner of your data stored in a centralized data bank, just like investing your money in one location or putting all eggs in one basket. You can own your information through decentralization using blockchain technology, and if you must, you can share it with a 3rd party entity under your conditions. You can even monetize your personal information, including health data. If you are a physician, you can do the same with your clinical decision-making practice.
Decentralization is the initial remedy for the bleeding wound caused by corporate data piracy and addiction movement- “Dataism.”
Confidentiality is not just about Protecting the Demographic.
Entities perpetually reassure users that their health information and data, in general, are kept confidential, not shared by 3rd party, or even encrypted for protection. We all know that these latter are nothing but buzzwords. But what the public fails to understand is that entities can process the raw data (Even without knowing what information belongs to whom) using various Artificial Intelligence Algorithms and Analytics. Once they refine those data, they can sell it, share it, and use it in any way. They can even match a particular data with the demographics and IP address of the originating source and the upshot; "snatched informational power from a person." Therefore, in today's realm of scientific and technological advancement, confidentiality has a different meaning. Such disparity between the semantic shift and delayed public perception has created a vacuum that has drawn entities into space where they can freely manipulate legislators, fool the public. In the process, make trillions of dollars without giving back a penny (without any string attached or conditions) to the legitimate owners of the information.
Confidentiality pertains to everything that has to do with a person, be it a name, social security number, national ID, smoking habit, or how a person got a scar on his back. It applies to everything, even if the vital identifying information of a person is sealed. Simple sealing of a person's identifying information would have been sufficient before the advancement of Big Data and electronic file systems, such as Electronic Health Records (EHR). Still, now but now, that is the metaphor of a band-aid on a gunshot wound.
The Role of being Transparent while Maintaining the Confidentiality
In an ideal world, we would be living in a free, open system where everyone would share their personal information voluntarily, underpinned by the particular agreeable condition of the parties in the sharing process. There must be selective transparency to accomplish that. (on that specific deal) along the process, there must be full accountability of the parties in place. That is utterly nonexistent in the contemporary world. The corporations are feudal of the new era that has been able to curb government military and political powers to their benefits to make public; as serfs.
Once again, Let's not blur transparency with the invasion of privacy, as the latter is involuntary and harmful, where the former is positive, productive, and fair. Likewise, being Secretive is not confidentiality, as is anti-transparency. A secretive person typically is either too lazy to stand up and hustle or has alternative intentions aiming to monopolize the system. Corporations are secretive and non-transparent, and Patient data is exposed and exploited by them. Once fully accessed, use patient data against them in various manners, such as raising their insurance premiums, tracking their activities and habits, etc.
Importance of Confidentiality in an individual's Life
Maintaining transparency while protecting patient privacy is essential because unbiased, bilateral transparency ensures trust and limits vulnerability. In other words, transparency ensures the fair exchange of power without monopolization and places one side at a better advantage than others. Transparency ensures a controlled giveaway of power in return for another form of energy, like money for information. But indiscriminate piracy of information power is unethical and illegal in most instances (at least theoretically). Let us keep in mind that We must apply transparency universally to every person, all entities, and government administrations.
Patient data is valuable, so Let’s save the profit of data to its lawful owner. Just imagine if the patient gets paid for staying healthy? Or a physician can get paid directly, yet merely for having a better connection with one patient? Imagine if the quality and value of medical care is not monopolized and determined fictitiously by the insurance industry, but purely based on the doctor-patient visit. I bet for some this seems too realistic, but I beg to disagree!
So; It is essential to decentralize data and promote blockchain technology in our everyday lives. We must return the profit of value-based reimbursement to the original owner of the data.
For decades physicians and patients have obeyed payment schemes dictated by insurance administrators and government bureaucrats and now thru value-based reimbursement!
Maybe it is time to let Insurance companies, and Governments get the feel of their own resolutions; and reimburse them based on the values set by their clients; patients and doctors too!
Let us pop the question- When are patients and physicians controlling insurance executives and politicians'’ wages through a value-based reimbursement system. And that, where are the physician's supporting organizations like the American medical association (AMA) to provide them?
Once you have the answer, or even you do, don't, then we see ourselves on the right track- both as sovereign individuals and as a healthy society.