Notes from Individual Involvement Workgroup
Date: May 19, 2010
Time: 4:30pm-5:30 pm
Attendees: Arien Malec, Jackie Key, Garrett Dawkins, Richard Elmore, John George, David Kibbe, Janet Campbell, Tony Calice, Paul Saxman, Lee Jones, Deven McGraw

Actions from this Week
#
Date
Action
Status
Owner
Due Date
19
5/19/10
Provide guidance to the HIT Policy Committee/MU Workgroup as appropriate
Open
WG
n/a

Actions from last Week
#
Date
Action
Status
Owner
Due Date
16
5/13/10
Review the statement about the importance of patient to provider communication, its technical implementation, and the issues it raises.
Open
WG
5/19/10
17
5/13/10
Schedule a review with Deven McGraw, HIT Policy Committee - regarding policy support for Patient to Provider communication - possible options on Wednesday 5/19 at 4:30-5:30 PM ET
Closed
Honora
5/19/10
18
5/13/10
Email ideas about topics to focus with Devon to Rich or post on the Wiki
Open
EG
5/19/10

Notes
· Purpose for this meeting: Discuss intersection of policy and patient engagement
o Clinical value for patient engagement is high, but there are many corresponding policy issues
o Goal is to communicate work being done by the Individual Involvement group to Deven

Opening Comments from Deven McGraw:

· Bi-directional flows of information is an important topic for the HIT Policy Committee
· Two types of information flows:
o Patients receipt of their data
§ Already largely covered by stage 1 MU
o Incorporation of patient-generated data into a provider’s EHR
§ On deck for stage 2 MU
§ Wide variety of patient-generated data
· Wants to understand what NHIN Direct has done thus far to support bi-directional flows from a technical perspective (whether via PHR or otherwise)
· Concern that we may be laying technical pathways for bi-directional flows to happen as part of stage 1 before the policy is in place to support it

Summary of “Patient to Provider Issues and Implementation” position paper from Janet Campbell:

· Original NHIN direct technical framework did not address patient – provider communication scenario though it was apparent that the same technical channels used for provider-provider communications could be used for patient-provider scenario as well
· Patient-provider scenario highlighted several issues that would also apply in provider-provider scenario
o Lower degree of identity proofing occurs via the internet vs in person
o Need to distinguish between identifiers given to patients as opposed to providers in situation where PHR is tethered to an EHR
o Providers may refuse to accept patient-generated data
§ Where is message stopped?
§ How to communicate reason for this to both patient and provider?
o Need to educate patients about expectations for engagement

Comment from Deven McGraw

· Does the position paper assume the use of a PHR? What about email?

Comment from Richard Elmore

· A regular email from patient-provider would not use NHIN direct architecture

Comment from Arien Malec
· A precondition for this type of transaction is that there be some sufficient level of authentication to ensure that the same user and corresponding address are being exchanged with

Comment from Paul Saxman
· How do caregivers fit into the picture, where a single person may handle health records for multiple individuals?

Comment from Deven McGraw

· Already a great deal of legal guidance on ability for people to make health decisions for others
· A provider should make sure to communicate with both the patient and the person who has the legal authority for that patient
· A PHR can delegate access to appropriate individuals

Comment from Janet Campbell
· The organization providing information has responsibility for determining who has access to information

Comment from John George
· Policy is needed around what should happen with patient-generated data
o Provider obligation to act on the data
o This is likely outside the scope of this group to address

Comment from Deven McGraw

· The MU workgroup has not yet tackled this

Comment from Arien Malec
· Keep in mind that a provider can send conscious or unconscious signals to indicate whether they are open to patient engagement (regardless of whether they have the technical capability to support engagement)
· Concept of a trust circle bound by a core set of trust assertions
o One trust circle is established by organization, this provides a uniform level of identity assurance and authentication
o Each constituency has a different set of trust expectations
§ Providers are accustomed to accepting info from another provider, but it is not usual practice for a provider to accept info from a patient
o A trust circle needs to be uniform in terms of expectations for participation
§ Would not be a good idea to mix providers/patients in a single trust circle
§ Some trust circles require a lot of application behavior
o A lot of application functionality is implied if you accept patient-generated data

Comment from Richard Elmore

· From a technology standpoint, there is not the same degree of readiness to incorporate patient-generated data
· Patients already do give data to their providers via fax/unsecured email and it is part of NHIN Direct’s mission to do better than this
· However, policy is not yet ready to support patient-generated data
· Unfinished business: Given that we are not yet supporting patient engagement, how to reject patient communication that is facilitated by the technologies we are putting in place for NHIN Direct?

Comment from Deven McGraw

· Are we envisioning an automatic response?

Comment from Richard Elmore

· Current NHIN Direct security and trust recommendations would not prevent reply to an email
· The Concrete Implementations will need to make some decisions are this

Comment from Deven McGraw

· The HIT policy committee is on track to put out recommendations about patient engagement this fall
· NHIN Direct could provide guidance toward these recommendations
· communication from This workgroup will support the policy committee’s work as much as possible
· Potential policy question: should a patient-provider communication be proceeded by a provider-patient communication?

Comment from Garrett Dawkins

· If a patient reverts to standard email from secure communications, could open up potential security concerns

Comment from Janet Campbell
· Although we are proposing something similar to email within NHIN Direct, we are already building other infrastructures
· We shouldn’t panic about a patient replying by email, we will be more managing more info than that

Comment from Arien Malec
· We have the appropriate technology to accomplish patient engagement, but need to couple with policy