A conversation about consumers and privacy: National Partnership for Women and Families

Last week, Josh and I went to visit the headquarters of the National Partnership for Women and Families, hosted by Deven McGraw, the organization’s Chief Operating Officer. Deven also happens to be part of PCHIT’s Advisory Group.

We were stimulated to learn more about the National Partnership because of Deven’s experience in health policy and consumer issues in health information technology. For me, I really enjoy learning about the passion and energy that creates organizations dedicated to the empowerment of people. That’s the same energy that fosters patient-centered health care and the technology that supports it.

Deven showed us some of the landmark legislation that the organization’s founders helped enact, including the Pregnancy Discrimination Act, and the Family Medical Leave Act. These protections are ones that we now take for granted; seeing them on a wall is a reminder of the work it took to make them part of our society.

Josh and I then discussed some of our experiences to date about PCHIT, and we talked about factors supporting the adoption (or lack) of Personal Health Records, especially the privacy component. The conversation was a really good one for me, because I come from a health care organization with a very visible commitment to privacy and consumer empowerment.

Deven spoke of her own experience with a PHR offered by her health plan. She indicated that she was not able to sign up to use it, and even counseled her colleagues accordingly, because of ambiguous language in the invitation from the health plan about the use of data entered into the PHR. It says something significant when one of the strongest proponents of of the use of a PHR cannot use the one offered to her by her own health plan.

After our conversation I went back and re-read the privacy policy of Group Health Cooperative’s MyGroupHealth web site. It says:

(ghc.org privacy policy)Group Health Cooperative does not make underwriting or insurance coverage decisions based on our members’ use of the MyGroupHealth site. We do not monitor individual use of health information resources, such as Healthwise┬« Knowledgebase* or Group Health Cooperative health information pages.

I recall this language as being present since the site was launched in 2000. It has not changed since then. This was a moment of reflection as people have asked, “How has Group Health achieved significant adoption by patients?” We haven’t really seen anything but high adoption. Maybe that’s because of both the policy and the very compelling nature of a connection to the patient’s actual care team, which is what MyGroupHealth offers. I hadn’t really put the two together as requirements before our talk with Deven.

Is it possible that language like this (backed up with behavior to support it) in PHR invitations and privacy notices would improve adoption? And by how much?

We learned in our visit that up to 32 individuals in the National Partnership Office did not adopt a PHR because of this issue.

At the same time, though, Deven and the National Partnership are working to find solutions, through service on the Confidentiality, Privacy, and Security Workgroup of the American Health Information Community. It also houses the Health Information Technology Consumer Principles, which serves as a guide for others.

With thanks to Deven McGraw and the National Partnership for Women and Families for demonstrating, as with the legislation on the wall, what I/we take for granted in one environment is something that still needs to be worked toward for all of society.

If readers have thoughts on their own experiences signing up for PHRs and comments on the invitations they’ve received, feel free to post them here.


Ted Eytan, MD