Doctor signing papers
Image: Kaspars Grinvalds/Adobe Stock

If the COVID-19 pandemic has taught us anything about the use of digital technologies and artificial intelligence, it’s that such technologies can both be a powerful cure and a potentially harmful curse.

We saw that digital tools and AI applications could have a game-changing impact on public health, disease surveillance, vaccine research and service delivery, to name just some examples. But we also observed that digitally or AI-enabled technologies were used to surveil, monitor populations, curtail freedom of expression and undermine access to information. In the healthcare industry, where data privacy and protection are major priorities, these new technologies can pose some major issues. Let’s dive deeper into what data governance means for healthcare and what’s at stake if emerging technologies are used inappropriately in the sector.

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What is data governance in healthcare?

Data governance in healthcare focuses on ensuring that all people, processes and technology within the healthcare organization use data appropriately. Demographic information, treatment plans and patient visit records are some examples of data that are most commonly subjected to healthcare data governance processes and procedures.

Whether it’s a long-term care facility or a private family practice, healthcare organizations around the world meet with millions of patients every day. During the care process, protected health information, or PHI, and other kinds of sensitive information are shared with the healthcare organization and stored in its various systems. This data is not only sensitive but is also subject to a variety of compliance regulations, such as the Health Insurance Portability and Accountability Act (HIPAA).  These rules and regulations require that healthcare organizations use, share and store health information with certain privacy and protection measures throughout the data lifecycle. Following these rules helps organizations to avoid noncompliance fines and legal issues while simultaneously ensuring a better patient experience.

How does data governance impact healthcare?

Without appropriate data governance procedures and training in place, healthcare organizations are likely to find themselves in danger of noncompliance. HIPAA violations in particular can occur at any level of an organization; if an undertrained staff member or unsecured database is operating in your organization, there’s a huge likelihood that they will eventually misuse patient data and breach HIPAA regulations. This kind of breach can lead to noncompliance, fines, legal issues, poorer patient experiences and even a loss of trust within the greater medical community. Data governance means the difference between a successful and fully operational facility and a facility that gets shut down by the government.

On the other hand, when data governance principles are applied successfully in the healthcare sector, a slew of benefits outside of basic compliance can be realized. Patients feel confident that their information is safe and begin to refer their friends and family members to your network. Data becomes easier to find, label and organize for new operational use cases and emerging patient technologies. Less time and energy is spent on finding the right datasets for upcoming audits. In other words, data governance goes beyond protecting healthcare organizations and their patients and actually gives them new opportunities for growth.

The power of digital technology and AI for sustainable development

No industry or company can afford to forego the benefits of technological progress. In fact, research indicates that digital technology and AI can boost our capacities toward realizing the United Nations’ Sustainable Development Goals by 2030.

The potential is especially enormous in the health sector and could include the following:

  • Improved diagnostics and treatment
  • More efficient and resource-optimized healthcare management
  • Better medical training and targeted health financing.

With only eight years to go, and given that an estimated half of the world’s population still does not have access to primary health care, such progress is urgently needed. This of course requires increased investments in digitally-enabled health systems and essential health technology. Simultaneously, it requires healthcare companies to preemptively plan for new data governance and security needs.

Overcoming obstacles in healthcare data governance

The lack of a comprehensive global health data governance framework is a critical obstacle that needs to be addressed in order to leverage the full potential of digital technologies and AI in healthcare.

For digital technology to fully contribute to positive health outcomes, we must address and overcome underlying conditions of inequality and injustice. We must prevent digital technology from being used to extract data for unethical commercial or surveillance purposes, and we must stop it from discriminating against minorities and vulnerable people in insurance schemes.

At the same time, we need to close existing data gaps that disproportionately impact marginalized people, including those of low economic status who do not have access to healthcare or communities where health data is not routinely collected.

As outlined in a recently launched report by The Lancet and Financial Times Commission on Governing Health Futures 2030: Growing up in a Digital World, it is vital that health data governance mechanisms are implemented for “simultaneously protecting individual rights, promoting the public good potential of such data and building a culture of data justice and equity.”

Health data governance principles

It is against this backdrop that Transform Health, a global coalition working on achieving universal health coverage through the use of digital technology and data, is now taking this call to action one step forward by presenting a comprehensive set of Health Data Governance Principles, the first global set of principles to guide the use of data in health systems.

The eight principles were developed in an inclusive, civil society-driven, global consultation process involving more than 200 contributors from over 130 organizations through international and regional workshops, followed by an open public consultation. The process was designed to gather perspectives and expertise and ensure meaningful engagement of diverse stakeholders from across geographies and sectors. The involvement of young people was an especially crucial priority for us at Fondation Botnar; we believe that they must be treated as equal partners in the development of policies and practices, particularly in the digital and AI sectors.

While the principles speak to and build on existing norms, one of their key distinguishing features is that they bring a solid human rights and equity lens to the use of data within and across health systems. For example, the principles stress the need to “ensure that the benefit of data use and data-based health systems is equitably shared across all groups and populations, regardless of social, economic or political characteristics.” They thereby focus on universalizing the benefits of health digitalization.

Within only four weeks, the principles were endorsed by more than 80 diverse organizations – from the WHO-hosted Partnership for Maternal, Newborn and Child Health, to PATH and FIND, the global alliance for diagnostics.

World leaders must act now

But the principles are only a first step. They are a critical milestone towards the development of an authoritative framework for the governance of health data to support the use of digital technologies and data for global public good – where all people and communities can share, use and benefit from health data.

At the recent World Health Assembly, we brought attention to this issue and called on world leaders to adopt these principles that have now also been endorsed by the World Bank. We hope that leaders around the globe adopt these principles, as such a global framework would enable us to collectively reap the benefits of digital technologies and data for the global public good and to improve people’s future health and wellbeing in a responsible way.

Whether you’re working on health data governance frameworks on a global scale or refining how data governance works within your own healthcare organization, the right training for healthcare professionals can make all the difference. Courses like The Data Protection & Privacy Bootcamp Bundle from TechRepublic are a great way to offer your team the standardized training they need to comply with data governance rules and expectations.

Dr. Ulla Jasper is the governance and policy lead at Fondation Botnar.

Dr. Ulla Jasper is the governance and policy lead at Fondation Botnar.

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