The patient-consumer spectrum is a growing concept in which healthcare is rapidly transitioning from a periodic activity in fixed, traditional health care settings to an around-the-clock activity that involves the generation, use, and integration of data reflecting many aspects of individuals’ lives and behaviors. Accompanying this spectrum are blurred distinctions between traditional versus consumer-generated health information and differences in expectations of how health information across this spectrum should be protected or treated.
On July 27, 2020, during the RightsCon 2020 virtual conference, the Future of Privacy Forum’s (FPF’s) Health Policy Counsel and Lead, Dr. Rachele Hendricks-Sturrup sat down with three health data governance and policy expert panelists to explore the privacy and policy implications across the broadening patient-consumer spectrum:
- Carolina Rossini, Co-Founder and CEO, Portulans Institute
- Megan Doerr, Principal Scientist – Governance, Sage Bionetworks
- Teresa Patraquim da Conceição, Head Privacy Team – International, Novartis
An audience poll was taken to garner the panel audience’s perspectives regarding the privacy of consumer-generated versus traditional health care data. Just over half (52%) of the audience members who participated in the poll felt that the privacy of consumer-generated health data should be treated the same as traditional health care data:
These split results highlight the need to discuss data privacy and rights across the growing patient-consumer spectrum. The panelists took on this challenge and offered the following key takeaways:
- Data availability engenders discovery and collaboration… at a price
- Context is critical
- Smart regulation is key to protection
- Informed consent remains important
- Trust in data use requires transparency and governance
- Data subject representation, rights, and respect are paramount
- Data justice means addressing the digital divide
Dr. Hendricks-Sturrup and the panelists concluded that, in order to successfully navigate blurred expectations of privacy across this spectrum and make progress toward establishing meaningful legal and policy frameworks and best practices, diverse stakeholders from industry, academia, and civil society must be engaged and barriers to their collaboration must be addressed.
Read the post-panel white paper here.
Watch the RightsCon panel below:
To learn more about the FPF Health Initiative, contact Dr. Rachele Hendricks-Sturrup at [email protected].