Click the image to view the letter we submitted last week to ONC, commenting on the December 10 report of the President’s Council of Advisors on Science and Technology (PCAST) about health IT. The response was driven by SPM policy chair David Harlow and approved by the executive committee. Some key excerpts:

“In the long run, each patient should have the right, and the easily exercised ability, to

  1. Access all of their own health data. (The right to receive data)
  2. Share information in the record with other individuals or organizations, privately or publicly, as the patient sees fit. (The right to send freely)
  3. Aggregate data in a meaningful way from multiple sources (e.g., multiple physicians, clinical labs, imaging centers), before anyone else does, or at least as soon as anyone else does. (The right to aggregate)
  4. Flag errors and add comments, and have comments acknowledged even if not “accepted”, in an automated and trackable fashion. (The right to correct data)”

“For purposes of this discussion, our key comment, and our goal for the national HIT infrastructure, is that every patient must be a full peer on the health information network.”

“Empowered, engaged patients want the aggregation of their health data to be done with them, not to them.”

“We suggest that health information exchange should learn to navigate health information with and through patients, rather than presume to navigate around them.”

For a great summary of the issues in the PCAST report, and other stakeholders’ positions on them, see Vince Kuraitis’s e-Care Management blog, or the cross-post on The Health Care Blog.