Global Perspectives on the Privacy of Health Information

The 19th Congress of IFHIMA, the International Federation of Health Information Management Associations, will feature the release of IFHIMA’s latest whitepaper, “Privacy of Health Information, an IFHIMA Global Perspective.” After months of work, I’m eager to share it and hope it sparks good discussions. IFHIMA has a unique vantage point on how privacy initiatives vary, and the paper includes case studies from Australia, the European Union, India, Qatar, the Republic of Korea (South Korea), and the USA.

Health data is no longer kept just for providers; rather, it is increasingly shared across systems and borders, used for research and analytics, and shared directly with the patient. That means that privacy is more important than ever, especially as increasingly digitized data grows at an astronomical rate. In the United States, health data doubles in volume every 73 days!

While healthcare transformation looks different in various places throughout the world, one thing is consistent: “It is critical that the privacy of individual health information be protected throughout the transformation process.” The whitepaper reviews how several countries and entities are approaching this challenge, examining historical privacy tenets and the changing privacy landscape, including the General Data Protection Regulation (GDPR) of the European Union.The paper includes:

  • Global privacy trends
  • What is personal information?
  • Privacy and trust
  • Challenges in maintaining trust when technology moves faster than regulations
  • Privacy stewardship foundations, including the role of the privacy/compliance officer
  • Avoiding risks, harm, and breaches
  • The complexity of breach notifications
  • How technology impacts privacy

After a thorough discussion, the paper also suggests several actionable steps that anyone can implement and discuss with their teams. Privacy is a team effort, but it requires a strong, trusted leader who can be the voice of clarity and transparency for patients, consumers, and regulators — all while building consensus.

These steps include:

  1. Get involved as privacy regulations are developed
  2. Assess what the regulations may mean to your organization
  3. Communicate your insight to the team, leadership, and regulatory bodies
  4. Identify required changes to systems, processes, and technologies
  5. Train your teams, admins, and patients about their privacy rights and responsibilities
  6. Commit to ongoing professional growth to stay abreast of the changing landscape

This whitepaper will aid anyone tasked with planning for increased data sharing while trying to manage healthcare privacy. Ministers or Department of Health staff, privacy and data governance consultants, vendors, and health systems should find it especially helpful. Whether you are from a nation crafting its initial privacy regulations, or a nation revising insufficient policies, the information is relevant and enlightening.

As president-elect of IFHIMA and Board Liaison to the Privacy Workgroup, I’d like to express my appreciation for the hundreds of hours of work contributed by this exemplary group of volunteers. Special thanks to workgroup leader Jean Eaton, CHIM, of Alberta, Canada for her leadership and expertise. 

Register and receive  this whitepaper and IFHIMA Global News, published three times per year.  Have an example of privacy regulations in action? Share your thoughts below.