A new report released by the Aspen Health Strategy Group grapples with the urgent need to benefit from the health data now available on an unprecedented scale while ensuring that appropriate privacy safeguards are in place. Protecting Health Data Privacy and Improving Patient Care is the product of a year-long, in-depth study and the consensus of senior leaders in the public and private sectors.
The report advances “Five Big Ideas” to ensure that data is used in service to medical advances while protecting the individuals that are the wellspring of that data:
- Congress should update federal health data privacy laws.
- Health data privacy laws should reflect social norms.
- All entities that hold health data should have clear policies.
- Health sector leaders should advance a new covenant of health data use.
- Consumer participation in health data privacy practices should become the norm.
Five themes emerged in the group’s discussions that helped guide the development of the big ideas:
- The health data ecosystem is vast and growing rapidly.
- Current rules fail to protect health data privacy adequately.
- Safeguarding privacy is essential to realizing the benefits of health data use.
- Health data use creates benefits and harms that are inequitably distributed.
- Rules regarding health data privacy should consider the type of data and how and by whom the data will be used.
In its call to move forward, the report states, “Significant gains to human health are achievable if we harness the power of health data and rapidly improving analytics, yet current uses of health data go beyond what patients and consumers find acceptable. We must redesign our approach to health data privacy to honor the ethical value of privacy and to earn public support for using health data to positive ends.”