Data Privacy Frontline Reports

Data Privacy Frontline Report

Global news from the frontlines of data privacy

Stay up to date on global news and regulatory changes, including legislative predictions, interactive tools, and cutting-edge research and implementation.

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February 2025

  • Global: 100+ nations convened in Paris, seeking to align on AI and shifting towards a more innovation-friendly and deregulated approach to support AI growth.
  • EU: The European Commission is working on a Data Union Strategy to streamline existing data rules and allow for more seamless data sharing at scale while maintaining high privacy and security standards.
  • US: Health care groups unite in calling for proposed HIPAA Security Rule amendments to be “rescinded immediately,” arguing they would impose significant burdens without improving cybersecurity.

January 2025

  • EU: The Council of the European Union has adopted the European Health Data Space (EHDS) regulation, aiming to improve individual access to health data and enable the reuse of certain health data for research and innovation.
  • US: The current president has revoked an executive order designed to mitigate AI risk, with some supporters of the move arguing the executive order was onerous and forced companies to disclose trade secrets.
  • APAC: India’s Ministry of Electronics and Information Technology has opened public consultation on draft rules to operationalize the Digital Personal Data Protection Act (DPDPA), which was finalized in August 2023.

December 2024

  • US: The Department of Health and Human Services (HHS) has proposed an overhaul of the Health Insurance Portability and Accountability Act (HIPAA) Security Rule that could have “significant consequences” for covered organizations.
  • APAC: South Korea’s National Assembly has passed comprehensive AI legislation, combining proposals from different political parties and mirroring the EU AI Act.
  • EU: The European Data Protection Board (EDPB) has adopted an opinion on using personal data in AI model development, including when AI models can be considered anonymous.

November 2024

  • EU: The first draft of a commissioned General-Purpose AI Code of Practice—designed to guide the development and deployment of AI models—is now under review.
  • US: The Department of Health and Human Services inspector general has determined that the Office for Civil Rights (OCR) should enhance its HIPAA audit program.
  • Global: The OECD (Organization for Economic Co-operation and Development) has issued a report on prospective AI benefits, risks, and policy imperatives.

October 2024

  • UK: The UK government has unveiled its Data Use and Access Bill in its latest effort to modernize the UK General Data Protection Regulation.
  • US: A Texas lawmaker has released a draft of an “innovation-friendly” comprehensive AI regulation bill, which could become a model for other US states.
  • EU: The European Data Protection Board (EDPB) has adopted guidelines on the processing of personal data based on legitimate interest, including a 3-question test to determine when you can invoke legitimate interest.

September 2024

  • APAC: The Australian government has introduced much-anticipated reforms to its Privacy Act of 1988, including new enforcement powers and transparency requirements around automated decisions.
  • US: Texas’ attorney general has reached a settlement in an investigation into an AI healthcare tech company, addressing allegations of false and misleading statements about product accuracy and safety.
  • Global: The United Nations has adopted a Pact for the Future, including a comprehensive global framework for digital cooperation and AI governance.

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Archiving / Destroying

Are you unleashing the full value of data you retain?

Your Challenges

Do you need help...

  • Unleashing the full value of retained data so they can be put to work safely and responsibly in line with privacy regulation?
  • Defining and implementing effective archival and disposal processes for personal data?

OUR SOLUTION

Value Retention

  • Retain the business value in your data through anonymization.
  • Ensure compliance in your retention & destruction strategy.
  • Maximize the reuse of information by removing what is personal.

Client Success

Client: Comcast

Situation: California’s Consumer Privacy Act inspired Comcast to evolve the way in which they protect the privacy of customers who consent to share personal information with them.

Read the full story >

Evaluating

Are you achieving intended outcomes from data?

Your Challenge

Do you need help...

  • Optimizing the use / analysis of data to achieve your organization’s intended outcomes with measured success?

OUR SOLUTION

Unbiased Results

  • Reduce / minimize risk of bias in your data for machine learning.
  • Ensure transparency, fairness, and AI ethics / compliance.
  • Ensure data ethics & compliance in your data models and results.

Client Success

Client: Integrate.ai

Situation: Integrate.ai’s AI-powered tech helps clients improve their online experience by sharing signals about website visitor intent. They wanted to ensure privacy remained fully protected within the machine learning / AI context that produces these signals.

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Accessing

Do the right people have the right data?

Your Challenges

Do you need help...

  • Ensuring the right people have access to the right data at the right times?

OUR SOLUTION

Usable and Reusable Data

  • Enable internal access and / or external sharing of data for primary and / or secondary uses.
  • Ensure data are useful and reusable in alignment with FAIR principles.
  • Ensure data have the right level of privacy protection for the use.

Client Success

Client: Novartis

Situation: Novartis’ digital transformation in drug R&D drives their need to maximize value from vast stores of clinical study data for critical internal research enabled by their data42 platform.

 

See the full story >

Maintaining

Are you empowering people to safely leverage trusted data?

Your Challenges

Do you need help...

  • Maintaining / processing data securely and efficiently to promote data enablement with auditable proof of compliance?

OUR SOLUTION

Security / compliance efficiency

  • Creating synthetic versions of data to be used for innovation / AIML.
  • Applying data minimization principles to reduce your risk exposure.
  • Transforming your data for secondary uses and access.

CLIENT SUCCESS

Client: ASCO’s CancerLinQ

Situation: CancerLinQ™, a subsidiary of American Society of Clinical Oncology, is a rapid learning healthcare system that helps oncologists aggregate and analyze data on cancer patients to improve care. To achieve this goal, they must de-identify patient data provided by subscribing practices across the U.S.

 

Visit ASCOPubs.org to read the full story >

Acquiring / Collecting

Are you acquiring the right data? Do you have appropriate consent?

Your Challenge

Do you need help...

  • Ensuring the acquisition / collection of the right data under the appropriate consent / contracts to maintain corporate integrity?

OUR SOLUTIONS

Consent / Contracting strategy

  • Developing a consent / contractual framework for collecting / sourcing.
  • Creating a comms strategy for internal / external stakeholders.
  • Ingesting and transforming data safely to earn trust.

Client Success

Client: IQVIA

Situation: Needed to ensure the primary market research process was fully compliant with internal policies and regulations such as GDPR. 

 

Read the full story >

Planning

Are You Effectively Planning for Success?

Your Challenges

Do you need help...

  • Defining a clear data strategy to achieve desired outcomes?
  • Getting it right at the start to avoid costly privacy missteps later?

OUR SOLUTION

Build privacy in by design

  • Building privacy into your data plan / platform / pipeline upfront.
  • Establishing a trusted data strategy (ethics, compliance, privacy).

Client Success

Client: Nuance

Situation: Needed to enable AI-driven product innovation with a defensible governance program for the safe and responsible use
of voice-to-text data under Shrems II.

 

Visit Nuance.com to read the full story >

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