Patient consent in health information exchange (HIE) is a fascinating area that is now unfurling on the healthcare stage. The ONC’s Tiger Team released their recommendations to HHS in a 19-page letter on August 19. I find the recommendations very interesting, especially regarding how to allow patients granular control over what personal health information is shared in a HIE and when. According to the Tiger Team the healthcare provider will be the primary educator for the patient regarding this consent:
“Based on our core values, the person who has the direct, treating relationship with the individual, in most cases the patients provider, holds the trust relationship and is responsible for educating and discussing with patients about how information is shared and with whom.”
—Tiger Team Recommendation Letter, August 19, 2010
In today’s healthcare exchange between doctor and patient, patients already get a too-brief snippet of time with their physician. And now this committee expects the doctor to be the primary educator for the extremely complex subject of privacy disclosure and information exchange. Maybe I’m being too cynical, but I don’t reasonably foresee a “meaningful consent,” as the Tiger Team phrases it, happening as long as the payment structure for doctors is still on a pay for procedure basis. There is simply not enough advantage currently for doctors to spend more time with individual patients to go over these very important, yet administrative details.
Granted the Tiger Team writes that other parties besides the healthcare providers will need to be in this educational process, including the “ONC, regional extension centers, and health information organizations” to “provide resources to providers, model consent language, and educational materials to demonstrate and implement meaningful choice.” But will there be ample funding for these materials to have the far reach necessary to educate the public? There is still a lot of work out there, and the Tigers admit to it:
“The technology for supporting more granular patient consent is promising but is still in the early stages of development and adoption…The goal in any related endeavor that ONC undertakes should not be a search for possible or theoretical solutions but rather to find evidence (such as through pilots) for models that have been implemented successfully and in ways that can be demonstrated to be used by patients and fulfill their expectations. ONC and its policy advising bodies should be tracking this issue in an ongoing way and seeking lessons learned from the field as health information exchange matures.”
I interviewed Jan Root, Ph.D., President and CEO of Utah Health Information Network (UHIN) last week about the recent EHNAC accreditation for her clinical HIE, and we got on to a really interesting topic of what happens when patients opt to only share certain parts of their health record. Take a listen below:
Jan brings up a really great question about how patient control of health information will balance with the goals of public health reporting and population study. I’m really curious to know your thoughts and insights, so please comment below.