Health data governance and its need for regulation

Image: Kaspars Grinvalds/Adobe Stock

If the COVID-19 pandemic has taught us anything about the use of digital technologies and artificial intelligence, it is that these technologies can be both powerful medicine and a potentially dangerous curse.

We have seen that digital tools and AI applications could have a revolutionary impact on public health, disease surveillance, vaccine research and service delivery, to name a few examples. But we have also observed digital or AI-based technologies being used to surveil, monitor populations, restrict free speech and undermine access to information. In the healthcare industry, where privacy and data protection are top priorities, these new technologies can pose major challenges. Let’s dig deeper into what data governance means for healthcare and what’s at stake if emerging technologies are misused in the sector.

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What is Data Governance in Healthcare?

Data governance in healthcare aims to ensure that all people, processes and technologies within the healthcare organization use data appropriately. Demographic information, treatment plans, and patient visitation records are some examples of data that are most often subject to health data governance processes and procedures.

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

What is the impact of data governance on healthcare?

Without proper data governance procedures and training in place, healthcare organizations risk finding themselves at risk of non-compliance. HIPAA violations in particular can occur at any level of an organization; If an undertrained staff member or an insecure database operates in your organization, chances are they will end up abusing patient data and violating HIPAA regulations. This type of violation can lead to non-compliance, fines, legal issues, poorer patient experience, and even loss of trust within the medical community as a whole. Data governance is the difference between a successful and fully operational facility and one that is shut down by the government.

On the other hand, when data governance principles are successfully applied in the healthcare industry, a host of benefits outside of basic compliance can be realized. Patients are convinced 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 business use cases and emerging patient technologies. Less time and energy is spent finding the right datasets for future audits. In other words, data governance goes beyond protecting healthcare organizations and their patients and actually provides them with new opportunities for growth.

The power of digital and AI for sustainable development

No industry or business can afford to forego the benefits of technological progress. In fact, research indicates that digital technology and AI can enhance our capabilities to achieve the United Nations Sustainable Development Goals by 2030.

The potential is particularly huge in the healthcare sector and could include the following:

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

With only eight years to go, and with an estimated half of the world’s population still without access to primary health care, such progress is urgently needed. This of course requires increased investment in digital health systems and essential health technologies. Simultaneously, this forces healthcare organizations to preemptively plan for new data governance and security needs.

Overcoming Obstacles to Health Data Governance

The lack of an overarching global health data governance framework is a major hurdle that needs to be overcome in order to fully leverage the potential of digital technologies and AI in healthcare.

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

At the same time, we must address existing data gaps that disproportionately impact marginalized people, including those of low economic status who lack access to health care or communities where health data are not systematically collected.

As noted in a recently published report by The Lancet and Financial Times Commission on Governance of the Future of Health 2030: Growing Up in a Digital World, it is critical that health data governance mechanisms are implemented to “ simultaneously protecting individual rights, promoting the public good potential of this data, and building a culture of data justice and equity.

Principles of health data governance

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

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

Although the principles speak to and build on existing standards, one of their key distinguishing features is that they bring a strong human rights and equity perspective to the use of data within and between health systems. For example, the principles emphasize the need to “ensure that the benefits of the use of data and data-driven health systems are equitably shared among all groups and populations, regardless of their social, economic or policies”. They thus focus on universalizing the benefits of digitization of health.

In just four weeks, the principles have been endorsed by more than 80 diverse organizations – from the Partnership for Maternal, Newborn and Child Health, hosted by WHO, to PATH and FIND, the global diagnostics alliance.

World leaders must act now

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

At the recent World Health Assembly, we drew attention to this issue and called on world leaders to adopt these principles which have now also been endorsed by the World Bank. We hope that leaders around the world will embrace these principles, as such a global framework would allow us to collectively reap the benefits of digital technologies and data for the global public good and improve the future health and well-being of people from all over the world. responsible manner.

Whether you’re working on healthcare data governance frameworks globally 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 and Privacy Bootcamp Pack from TechRepublic are a great way to give your team the standardized training they need to comply with data governance rules and expectations.

Dr. Ulla Jasper is Head of Governance and Policy at the Botnar Foundation.

Dr. Ulla Jasper is Head of Governance and Policy at the Botnar Foundation.

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