Wednesday, October 5, 2011

ONC Announcement of E-Consent Trial Project Contract Award

This is a really great project by ONC to address the soft side of HealthIT and HIE. That being the interface with the human patient, specific here to educating and getting the consumers preferences.
The Office of the Chief Privacy Officer (OCPO) within ONC proposes to award a contract to

a. Use innovative ways to
i. Educate and inform individuals of their option to give individual choice (e.g., automate informed consent process, patient-centered decision making process) in a clinical setting to share their health information electronically; and
ii. Ensure that individuals are knowledgeable participants in decisions about the sharing their electronic health information in a clinical environment.
b. Explore and evaluate ways of electronically obtaining and recording meaningful and informed choice from individuals in a clinical setting, regarding sharing their electronic health information.  
The project is designed to help identify some innovative best practices in ensuring that any choices patients make with respect to sharing their health information are indeed, meaningful: i.e., patients are adequately educated about issues that are important to them, and that they understand the choices they make as well as the consequences of those choices.  

I looked deeper in the document and was happy to see recognition of the existing works of IHE.

My biggest concern is that there doesn't seem to be enough guidance to the contractors to (a) look globally for how this is handled in other environments, and (b) to gather a set of reasonable privacy policies and their variability. In the case of (a) there are other environments that are ahead of USA on presenting Healthcare Information Exchanges, and thus there is some lead there on how they interact with the patients. 

In the case of (b) I worry that this project will focus only on what the patient wants to control, and will forget that the healthcare provider organization has the right to not accept all the controls that the patient desires. Typically this is due to real patient safety or provider safety concerns, sometimes it is because the provider organization knows they simply can't protect the data in that way. Sometimes it is because the provider organization does indeed use the data in secondary ways that do conflict with the patients preferences. This specific issue took much time to discuss in HITSP. It turned out to be a core part of TP30, that recognized that there is a need to record patient preferences that are not actionable directly but are there for a healthcare providing organization to utilize when they formulate the policy choices that they offer to the patient. It is only the binding of a patients accepted preferences to the providing organization that creates an actionable privacy policy that the organization is held to. (note I use organization here inclusive of Health Information exchange Organizations). 

I look forward to any opportunity to get involved with this project.

        From: ONC Health IT [] 
        Sent: Monday, October 03, 2011 9:01 AM
        Subject: Announcement of E-Consent Trial Project Contract Award

The Office of the National Coordinator for Health Information Technology
ONC's Office of the Chief Privacy Officer recently awarded a contract to APP Design, Inc. to find an efficient, effective, and innovative way to help patients better understand their choices regarding whether and when their health care provider can share their health information electronically, including sharing it with a health information exchange organization. The project team will design, develop, and pilot innovative ways to electronically implement existing patient choice policies, while improving business processes for health care providers.
To learn more about the E-Consent Trial project, please see the Statement of Work. ONC's formal launch of the E-Consent Trial Project will be in October.
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