From operational efficiency to better clinical outcomes, data enables improved analysis and informed decision-making. However, accessibility to and regulation of data remain key obstacles to unlocking its full potential.
Healthcare data is often stored in siloed systems, resulting in less-than-optimal sharing and interoperability. Likewise, a global patchwork of country-level requirements creates additional barriers to achieving global data accessibility.
Given these challenges, what steps can the healthcare industry take to enhance global data accessibility? Let’s take a look.
One of the key concerns related to accessibility is that most data used at the population level is not representative of the global population. The data currently used in medical research tends to have a bias toward US and European populations, overlooking billions of people. The goal of global data accessibility would be to make sources of underrepresented real world data (RWD) more readily available for research purposes.
To better understand how we can address this gap, we must look at the current state of data access.
The last few years have accelerated healthcare data collection and usage significantly.
The pandemic changed the way many healthcare and life sciences organizations think about data sharing. Whereas previously, there was a reluctance to share data that might lead to competitive innovations, the threat represented by COVID to the world’s population spurred unprecedented collaboration in an effort to save lives. This willingness to share data may not survive the post-COVID era, but the advantages of doing so are quite clear.
These are just a few examples of data catalogs that help facilitate the sharing of global data. While these and other sources of data exist, the raw data often lacks the clinical context necessary to drive improved outcomes for global populations. Improving access to these data sources, as well as RWD from an increased number of countries, will improve medical research and create many benefits for global healthcare.
From improving patient outcomes to driving advancements in the industry, the advantages of improved data accessibility are extensive and far-reaching. The following benefits are more easily achievable when barriers to accessing data are removed.
Data is a core component of how clinicians diagnose, treat, and deliver patient care. However, to truly improve patient outcomes for individuals and the public at large, data must be accessible, accurate, and complete.
For individuals, when data is interoperable and shared, clinicians can review all aspects of a patient’s medical history and provide better-informed care options. Unfortunately, access issues can often cause complications if numerous disparate systems are used to create and store a patient’s information – even sometimes within the same healthcare systems.
Clinical trials depend on rich datasets for cohort selection but identifying the right patient population is often an arduous task. RWD can be used to streamline cohort selection and broaden the candidate pool for trial recruitment. In addition, research supports that complementing randomized clinical trials (RCTs) with RWD can lead to improved trial efficiency and lowered costs.
Research and collaboration among institutions is another area that can thrive with improved access to healthcare data. Research projects use data as a foundation, and the data must be comprehensive in global public health.
Access to data is critical for population health management to serve all populations. If the data sources only provide insights for a subset, they don’t evenly apply.
As noted, most clinical data available for research and development is heavily US or European-biased, which leaves out a considerable number of people.
Improving access to healthcare data that represents all groups will allow for more comprehensive modeling of the risks within a population. This analysis can lead to better forecasting and prevention of disease outbreaks. Additionally, it can inform the programs deployed in a region so they are more relevant and beneficial.
Finally, improved data accessibility in healthcare drives innovation and progress in the field. The increasing sophistication through newer technologies like machine learning models has been instrumental in developing new treatments, medications, policies, processes, and more.
Although there are more factors at play here than simply data accessibility, it’s worth considering whether or not this treatment might be more widely distributed if data that represents more populations was readily available and used to develop next-generation therapies.
Given the greater role that artificial intelligence is playing in drug development, more and better data will be required to power machine learning algorithms to develop meaningful insights. However, there are several significant challenges that currently exist with broadening accessibility of data for research.
Patient data is subject to compliance regulations throughout the world. People have become concerned about breaches as hackers continue to target healthcare.
As a result, the creation, use, sharing, and storage of patient data must adhere to stringent rules and guidelines. This can cause issues with interoperability, and some organizations are reluctant to share anything, even knowing the potential benefits.
There is no global standard for representing healthcare data, and even within a single country, multiple standards often prevail.
The authors found that a lack of standards and the abundance of unique information systems pose challenges to the interoperability and sharing of public health data. To overcome these challenges, the global health ecosystem must move toward data standardization and ensure that data is clean, accurate, and complete.
Legal and Regulatory Fragmentation
As with privacy and security concerns, country-specific legal and regulatory requirements are not always data accessibility friendly. While regulations are necessary to protect patients, they can create compliance issues for public health entities.
It is imperative that any data platform looking to provide access to global RWD understands and abides by these legal and regulatory requirements. The obstacles they pose are real but not insurmountable. Finding a balanced approach that ensures privacy first compliance while enabling access to a diverse, globally representative dataset is key.
Another challenge can sometimes be the technology itself. Many different healthcare platforms create and use data, which exacerbates the standardization issue. Within a given hospital, clinicians utilize multiple procedures to deliver patient care in a given day, from nondigitized tools to handwritten notes, EHR systems, and related legacy (sometimes homegrown) applications. In some of the less developed healthcare systems, adoption of EHR systems is non-existent; paper charts prevail and are often incomplete and sometimes illegible.
Even when systems do exist, they may not be built using modern architecture principles, causing integration issues with newer solutions. Additionally, some commercial systems providers make it difficult to extract data consistently or charge high fees to do so.
Who owns the data? And who controls it? These are two questions that affect everything about healthcare data and its use.
The institutions that generate patient histories, labs, procedures, treatments, and outcomes own the data, as it lives in their systems, but patients also have ownership. There’s no simple answer to the ownership questions, and healthcare organizations must abide by the rules and regulations that govern the data in their resident country.
As more countries move toward empowering patients and requiring their access to their personal records, this will become an even more complex issue.
Taking steps to resolve the issues and expand access will drive the future of healthcare data with the potential for improving global health outcomes.
Opportunities, and challenges are present in global healthcare data accessibility. The benefits are immense and can positively impact world health. While challenges persist, they are not insurmountable.
