In the Internet We Trust?
Some exciting news for consumers in the e-health world today: at a press conference this afternoon, Connecting for Health/Markle Foundation released its long-awaited Common Framework for Networked Personal Health Information. Endorsed by many organizations, including AARP, Consumers Union, The National Partnership for Women and Families, The Center for Democracy and Technology, Dossia, Google, and Health Care For All (our own E-Health Consumer Advocate, Lisa Fenichel, participated in this 18-month project and is quoted in the press release), this framework tackles the difficult policy and technological issues that arise when personal health information is on the internet as happens when using PHR -- personal health record -- services. Its primary focus is the creation of practices and policies that promote privacy, personal control, ease of use, accessibility of information, and accountability.
Simultaneous with today's Framework release, Markle released a survey that "indicates that an overwhelming majority of U.S. adults see the value of online personal health records . . . At the same time, the vast majority of respondents said having key privacy practices in place would be a factor in their decision to use such services. Nearly half called specific privacy practices 'critical' in their decision to try one out," said David Lansky, chair of the work group that developed the new framework.
This ambivalence is no surprise. What is a surprise, however, is how well the framework faces the dueling needs of privacy and information flow and comes out with policies and practices that balance them both without seeming to sacrifice either.