By Selshia Sagayaratnam, WSO2
The principles of open data and open access have received significant attention. Open data allows anyone, from anywhere, free access to data. Yet, many individuals confuse open data with open access. The data-driven culture in healthcare organizations and the differences between open data and open access are discussed in this white paper, along with how better data cultures lead to better care.
Information has always been crucial for development across industries. Healthcare data has become a treasured asset as the industry is undergoing various challenges and changes to become more data-driven. Even after significant investment in data and analytics, many within the healthcare industry believe more collaboration and innovation is required to transform the health data culture into a more data-driven one. A data-driven culture is capable of leading the healthcare industry toward improved care and patient experience.
The concepts of open data and open access have drawn much attention in the recent past. Open data does ensure convenience in the accessibility of data and transparency to a greater level, but it also has its consequences. On the other hand, open access is all about free and easy entry to data for anyone, from anyone. But many confuse open data with open access.
This white paper discusses open data, open access, the data-driven culture in healthcare organizations, how better data cultures lead to better care, the comparison between open data and open access, and the path toward better patient outcomes.
Eighty one percent of questioned health system executives feel analytics is "very important" or "extremely important" to their leadership effectiveness, according to the Deloitte Center for Health Solutions in 2019 .
" Digital health to data-driven healthcare is a transformational journey."
Healthcare is an information-intensive system, where petabytes of data are generated regularly. Healthcare organizations are undergoing a revolution to become data-driven, with various technology trends emerging to support this cause. The use of data for decision-making purposes in all scenarios within an organization is called a data-driven culture. Sometimes data is used in the decision-making process in various instances by healthcare providers, replacing decisions potentially affected with emotions and assumptions. On such occasions, this is termed a data-driven healthcare organization.
Healthcare organizations must bear multiple costs that are affected by the inefficiency of inpatient admission management, infection control, and lack of preparedness to meet the demand during sudden outbreaks of unexpected disease. Such scenarios have been investigated by numerous health organizations after the COVID-19 outbreak. Apart from these costs, government mandates and regulations add additional costs borne by healthcare service providers. To manage these costs, healthcare organizations have an opportunity to use alternatives by embracing predictive care models based on population health. This method would be convenient to all stakeholders as digital health plays a crucial role among all providers.
According to a 2021 report by HIMSS analytics, 80% of health systems plan to increase their investment in digital health over the next five years .The definition of digital health is dynamic. The World Health Organization (WHO) describes digital health as, “a broad umbrella term encompassing e-health, as well as developing areas such as the use of advanced computer sciences (for example, in the fields of big data, genomics and artificial intelligence) – plays an important role in strengthening health systems and public health, increasing equity in access to health services, and in working towards universal health coverage” (World Health Organization 2022 ). Big data refers to an extensive amount of information that can be utilized to create greater outcomes and is crucial to the advancement of the healthcare sector. Big data can be used to accumulate healthcare data and helps to identify patterns and trends. There are emerging fields in healthcare such as genomics, radiomics, and precision medicine that deal with the analysis and processing of large sums of data. By working alongside such data, the healthcare sector can aspire to greater heights in the quality of the service they provide.
When shifting to a data-driven healthcare culture, aligning our focus on the newly available technology alone is insufficient. Methods of data collection, stakeholder interests, and overall healthcare data management are other factors that should be considered as they may directly or indirectly hinder transformation. Trends in technology, data quality, availability of data, patient participation and consent, and data security are a few key drivers of healthcare data transformation.
In a world that is subjected to constant changes and uncertainty, healthcare organizations are expected to be agile and capable of adapting to real-life situations. Digital healthcare has played a vital role here.
" The data culture of a healthcare sector is directly proportional to the care provided."
The healthcare industry has started to widely embrace technology as the needs of patients continue to evolve daily. Digitizing healthcare is a current trend that is observed globally as healthcare specialists attempt to involve technology to establish an easier and more convenient environment for healthcare workers and patients alike. Driven by these influencers, digital transformation in healthcare was inevitable.
New avenues are being made available after embracing digital transformation in the healthcare sector. With the help of data-driven insights, patient care, healthcare management, cost optimization, and many others, operations have become more transparent and convenient to manage and forecast.
Quality data is essential in nurturing a healthy data culture. The quality of a set of data is generally determined by accuracy, completeness, consistency, validity, uniqueness, and timeliness. Unless the data possess the above mentioned qualities, treatment has the potential for inaccuracies and bias. In the absence of this form of data quality, patient outcomes are jeopardized.
Therefore, data of good quality and value are a strategic asset that is of immense value when making well-planned decisions. Data-driven healthcare decisions and plans help to standardize the healthcare sector overall, while also playing an important role in improving patient satisfaction. For example, a 2020 article by Deloitte revealed that 42% of US consumers used tools to evaluate fitness and manage health-improvement objectives. The article adds that about half of them shared this information with their doctor, highlighting a willingness to share health data over time .
Open data describes all forms of data freely available to anyone. In other words, it can be explained as data that is freely accessible, exploitable, editable, and shareable for any purpose by entity.
" Open data does not equate to open access."
For data to be considered open, it should have no limitations that prevent it from being used in any way, it should be free to access (does not necessarily have to be free to use), and should be reusable.
As outlined by the British Medical Journal (BMJ), open access depicts a set of principles and a variety of practices through which research findings and outputs are distributed virtually for free access without any charges or other barriers. Simply put, it refers to free access to electronic resources for everyone without restriction .
The benefits experienced from openly available public health data are immeasurable. Open data in healthcare greatly increases the transparency of the sector. It also helps in preventing catastrophic events . Other benefits of open data for industry stakeholders are depicted using Figure 1 below.
Figure 1: Benefits of the open data culture
Similarly, Open access benefits various stakeholders at many stages, especially in healthcare. Significant stakeholders include patients, physicians, employers, insurance companies, pharmaceutical firms, and the government. As depicted in Figure 2, these stakeholders enjoy great benefits from open access
Figure 2: Benefits of the open access to its stakeholders
Since Aristotle first outlined the scientific method, openness and exchange of knowledge have been the heart of science. Robert Merton, often regarded as the father of sociology of science, started promoting the idea that research ought to be open to anyone in the 1970s .The emergence of online publications in the 1990s facilitated the open science movement, which reflected science's original aim of promoting transparency and collaboration in research and scientific communication. Supporters of the open science concept took it a step further by advocating for broader open access to data that has been generated or collected. Open data is founded on the notion that not only research results and publications, but also the underlying data that informs and supports them, should be made public. Open access is generally considered the lowest tier of open data. More than simply no-cost access to information, open access means that the material presented should be understandable to the reader and not too complex to incorporate into their knowledge base.
A lack of understanding about open data and open access persists within the healthcare industry. Health data is among the most sensitive data collected and stored by governments and organizations. Several data projects in the health sector over the past decade have emerged.
" Open data and open access leads to better access to patient care."
Several data projects in the health sector over the past decade have emerged. The global burden of disease project and the Global Research on AntiMicrobial resistance (GRAM) Project could be considered as examples of such projects. Due to the sensitive nature of health data projects such as these, the data collected and used so openly should be carefully monitored.
Establishing a spectrum of data openness is critical when sensitive data is collected and stored. Within the spectrum of data openness, evaluating how different types of data are currently governed, ranging from closed data with severely restricted access, to data that is openly published in reusable formats must be evaluated. Planning and decision-support data with varying levels of access and reusability constraints exist between these two extremes. These can be understood by viewing Figure 3 below.
Figure 3: Diagrammatic representation of open data and closed data in the healthcare sector
Better patient outcomes can be achieved when the benefits of open data and open access are utilized. The ability to access, evaluate, and exchange extensive patient data increases the effectiveness and security of care while also facilitating better healthcare decisions. The use of open data promotes scientific collaboration and partnerships, while enhancing research and analytical capabilities. This also aids in the early diagnosis of health and environmental threats, resulting in improved patient care. Open data also promotes accountability and transparency, leading to a better patient experience. For these reasons, embracing open data and open access in the healthcare sector is expected to lead towards a win-win solution for its stakeholders  .
This white paper focused on the data-driven culture in healthcare organizations and the differences between open data and open access, along with how better data cultures lead to better patient care.
Healthcare institutions are on a transformational journey from digital health to data-driven healthcare. Multiple costs are borne by healthcare institutions due to inefficient inpatient admission management, infection control, and a lack of readiness during unanticipated outbreaks. Healthcare organizations may use alternatives to manage these expenses by embracing predictive care models based on population health. Embracing digital transformation, and in particular, open data and open access, enables healthcare organizations to make better decisions and improve patient care as the industry looks to the future.
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