ONC began a public dialogue on the topic of the use of PGHD in 2012 that has informed its regulatory work over the years and still continues today.
In April 2012, ONC commissioned a Patient-Generated Health Data White Paper [PDF - 933KB] from RTI International to better understand PGHD uses, challenges and opportunities. ONC’s existing Federal Advisory Committees (the Health IT Policy Committee (HITPC) and the Health IT Standards Committee (HITSC)) built on this foundation by convening a public hearing in June 2012 to gather additional input on policies and standards needed to support PGHD and submitting recommendations to ONC in 2014.
In 2013, ONC convened a Technical Expert Panel on Patient-Generated Health Data (PGHD TEP) to identify good practices that can reduce concerns and risks and to encourage providers to implement PGHD through Meaningful Use and for purposes outside Meaningful Use. The PGHD TEP’s final report and appendix - [PDF - 2.1MB] was completed in December 2013. Also in 2013, ONC commissioned an environmental scan on the issue of data provenance.
In early 2014, ONC published an issue brief on PGHD and the role of health IT to summarize and further define the information outlined above. ONC also developed a fact sheet in 2014 for providers planning to incorporate PGHD use into medical practices and posted some additional tips in the Patient Engagement Playbook in 2016.