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The Importance of Transparency in Healthcare Data

May 12, 2021
January 17, 2024

It’s no secret that the past century has experienced enormous medical and technological advancements. It’s also no secret that because of this, life expectancy has increased worldwide. In a perfect world, all individuals would benefit from these advances and have an equal opportunity to reach their full potential for health. But this is not the case. Reality falls far short of this optimistic goal throughout the globe.

For example, although the U.S. spends more per capita on healthcare compared to similarly wealthy countries, it often ranks last in overall health system performance and health outcomes. Even more troubling is comparing high GDP countries with developing nations, such as those in Africa. This continent bears 25% of the global disease burden but has only 2-3% of the world’s doctors.

Throughout the globe, countries are lacking human and financial capital to build sustainable infrastructure. Unable to deliver adequate healthcare, they often seek assistance from wealthier nations. While short-term solutions such as aid and medication undoubtedly help, building stronger healthcare systems worldwide is the only long-term solution.

Reducing health outcome disparities should be a priority, and interventions must focus on bridging the gap between technology and healthcare access. Health data is continuously collected – but analysis of that data and strategy around it – is limited. Increasing health data transparency to analyze mass public health information is essential for building a stronger healthcare ecosystem.

Consumerism as a Driving Force

People have grown accustomed to instant gratification, the desire to experience pleasure or fulfillment without delay, at the touch of a fingertip. Consumer demand for instantaneous results has shaped businesses like Amazon and Uber. Yet, this behavior shift is not just a driving force for the goods industry. In fact, healthcare consumerism is no different, and patients are shifting the healthcare industry one touchpoint at a time.

Technology itself accompanies our needs and extends our lives, and consumer behavior is fueling the rise of convenient and transparent technology. As the world becomes increasingly interconnected, access to smartphones is growing. For example, smartphone ownership rates in emerging and developing nations are rising, climbing from a median of 21% in 2013 to 37% in 2015.

As mobile devices become progressively common, they become an unanticipated force in delivering better healthcare. For example, cloud computing allows health data to be sent to devices on-demand. Bluetooth-enabled devices such as glucometers and blood pressure cuffs have gained popularity among smartphone users. These advancements in self-monitoring technology have paved the way for “anywhere, anytime” care, especially among at-risk patients. Yet, we are only at the surface of the true potential of technology in healthcare. What is keeping us from diving deeper?

Whatever it is, the way you tell your story online can make all the difference.

Data Protectionism and the Fear of the “Transparent Patient”

In traditional healthcare, the patient existed only within the clinical setting. Today, advancements in healthcare technology have accelerated with the recent boom in digital innovation. Data itself has become a currency and capital on par with financial and human capital. This data is driving valuations, which in-turn is driving protectionism. Individuals also fear what would happen if their sensitive medical data was placed into the wrong hands. This apprehension is reasonable, but new technologies like blockchain are being developed to solve the structural problems evident in a digital world, such as ensuring individual data ownership, access restrictions, and security.

While the finish line hasn’t been crossed just yet, the healthcare industry is moving in the right direction. Digital health companies have responded to societal demands by creating EHR-integrated app-based solutions that log real-time health data. Health systems that invest capital into exchanging health records keep patients healthier and drive down costs. Physicians that offer patients digital health management platforms are investing in a support system extending well beyond episodic care. Increased interoperability would give care providers all pertinent health information, so they could offer patients the best possible treatment.  

The Untapped Potential

Accurately accessing the longitudinal history of patient populations prompts unique insight and care. When patient information is shared, situational awareness is improved, and appropriate treatment is administered. Beyond in-person treatment, aggregated health data leads to advancements in medications, treatments and processes that ultimately saves lives. Patients are given simple and motivating mechanisms to participate in their own care, which in turn creates transparency and fosters trust with the healthcare system, thereby reducing disease burden.

The global healthcare ecosystem would benefit from deidentified macro data by providing researchers and countless physicians with data that is otherwise difficult to access, leading to better-tailored, more effective treatments. Sharing cumulative data amongst global health systems can be mined to develop disease- and patient-specific care pathways that are not trial and error. Like the premise of the checklist manifesto for surgery, clinicians in developing nations, such as rural parts of Africa, would have the ability to follow step-by-step instructions on patient treatment with proven track records of improving health. In addition, financial resources would be better predicted, and costs and resources more adequately divided across populations, in turn creating greater health equity.

Clinical data holds the potential to help transform the healthcare system, and as age-related disabilities and chronic disease rates rise, society needs a solution more than ever. Data collection stratification and increased patient engagement depends on investing capital into analyzing this clinical data. Health data transparency and improved data collection methods offer consequential opportunities for health systems to ensure quality improvement and reduce costs across the board. The healthcare industry has a tremendous social responsibility, and we have the potential to enhance care quality and create targeted strategies that promote health equity. The future of tomorrow depends on it.

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