Notes from Individual Involvement Workgroup
Status of Notes: DRAFT
Date: April 15, 2010
Time: 1pm-2
pm
Attendees: Honora Burnett, Arien Malec, Garrett Dawkins, Richard Elmore, Rob Wilmot, John George, David Kibbe, Janet Campbell, Paul Saxman, Lee Jones, Sean Nolan, Karla Porter, Keith Boone & Lois Hooper

Actions
#
Date
Action
Status
Owner
Due Date
10
4/15/10
Arien will summarize for consensus to be able to pass on for the packaging group: given the workflow conditions, there would be cover letter but should also be able to annotate specific files as well
Open
Arien
4/22/10
11
4/15/10
Sean Nolan will write up a description of the asymmetric trust problem to pass onto the Security & Trust to figure out an elegant solution
Open
Sean
4/22/10
12
4/15/10
Next week we will agree on this story and then ask the S&T group to work on this on our behalf: http://nhindirect.org/A+patient+sends+a+message+to+the+provider
Open
All
4/22/10

Decisions
#
Date
Decision
2
4/15/2010
Rich Elmore is WG lead
3
4/15/2010
Discharge summary User Story should be a Must
4
4/15/2010
Agree on the must-have individual involvement stories (2011 MU criteria)
5
4/15/2010
Agree that patient -> provider user story is a Should not a Must

Notes
Agenda and Framing
· Review of last week’s action items
· Discussion
· Next Steps
Actions Items from Last Week:
  • Scope of Individual Involvement – call for consensus
  • User stories update
  • Patient-friendly - assumptions
  • Meeting patients where they are – assumptions
  • Other action items
Discussion:
  • Call for consensus: Scope of Individual Involvement Workgroup will include support for
    • Meaningful Use 2011 (Stage 1)
      • Send reminders to patients per patient preference for preventive/ follow up care
      • Provide patients with an electronic copy of their health information upon request
      • Provide patients with timely electronic access to their health information (including lab results, problem list, medication lists, allergies) within 96 hours of the information being available to the eligible professional
      • Provide clinical summaries for patients for each office visit

    • Meaningful Use 2013 (Stage 2)
      • Provide for messages from Individual to Provider
· Security & Trust – Asymmetric Trust
o How do you determine the difference between people you trust to send to and people you trust to send information to you?
o Does this a symmetry give us an out to communicate with patients?
o Is there a world in which providers can send information out (clinical summaries etc) even though they may not be comfortable for random people to ask questions
o Can become comfortable with bi-symmetric communication
o Does the trust adhere in the organization (secondary trust to white list the patients) or in the individual
o New User Story – patient sends a message to a provider
o Application level
o Issue for trust model
Comment from Rich Elmore
· How do we shape this conversation
· What are the means by which we see this through?
o Sean Nolan will write up a description of the asymmetric trust problem to pass onto the Security & Trust to figure out an elegant solution
· Is the model one that is “white labeled” or is it a model where there are a couple different ways to do this by inclusion/exclusion and that allows for situations where some providers can be more open?
Comment from David Kibbe
· We must have a push model
· Push information to patients who request it
Comment from Janet Campbell
· Focus on the musts
· Certificate authority
· Is the trust assertion made in the individual level or the organizational level
· Issues: patients don’t work the same as providers

Comment from Keith Boone
· Patient identifiers are not only given out by patients
· Decision to trust a patient might not be up to provider, might be up to the organization
Comment from Paul Saxman
· What are the roles of PHRs, as "institutional proxies", or thin clients (e.g. Web-based email tools)
· Is it possible for a patient to push ePHI to the provider without a PHR?

· Next week we will agree on this story and then ask the S&T group to work on this on our behalf: http://nhindirect.org/A+patient+sends+a+message+to+the+provider

· Finalize scope
· Boils down to two things: sending a CCD or CCR for a variety of purposes
· This group’s scope: MU 2011 Stage One requirements
· User Story Workgroup have “musted” all the MU stories
· Discharge summary User Story should be a Must
Should priority from individual to priority appropriate?

Comment from Garrett Dawkins
· What is the timeframe around this?
Comment from John George
· Is there anything that we need to be conscious of about this?
· Security & Trust Model – other things to direct other WGs to be cognizant of

· Our attention will be on the 2011 with the addition of the discharge summaries
Individual Involvement User stories updated
  • Updated stories – primitive for MU 2011 (Stage 1) is physician sends “stuff” to individuals
  • Important to provide context for Individuals
    • Assumption is that this will be provided through innovations. For example, CCD display technologies may make CCD self-descriptive.
    • Guidance to packaging group around how to establish context for multi-part content

o Important need for provider to establish some additional, textually written summary (cover letter) to provide context to reassure patient
o Requirement that the codified data that gets pushed to the patient is accompanied by a cover that is textual
o From content packaging perspective, the clinical package way doing this has one letter with a package of stuff (might have labs, and other stuff) or does each discrete chunk have a separate notes?
Comment from David Kibbe
· How are the personal health information platforms going to change as a result of NHIN Direct?
Comment from Janet Campbell
· Cover letter on everything , but optionally include one per item
Comment from Paul Saxman
· Up to people writing the summary
Comment from Sean Nolan
· Push for a format that uses both
· Primary use case would be single letter to start but
Comment from Keith Boone
· Will physicians want to make note and annotations to be associated with documents – separate component, and that seems to be the more natural interactive way that would work
· Yes, they should have a cover letter and/or explanatory text along with package and another note with the package
· Arien Malec

· Arien will summarize for consensus to be able to pass on for the packaging group: given the workflow conditions, there would be cover letter but should also be able to annotate specific files as well
  • Meeting patients “where they are” - assumptions
    • Each Individual may have multiple addresses (e.g., for multiple PHR’s, multiple e-mails). Each address has its own separate transmission.
    • Outside of NHIN Direct:
      • Provider verifies identity and consent before linking to an Individual’s address
      • Provider makes the decision that it’s appropriate to provide information to this address
      • Provider verifies that PHI is sent only to addresses with adequate authentication/security/logging
      • These target addresses may optionally provide notification services to the Individual of the update via public email – “where they are”
  • Meaningful Use 2013
    • Individual to provider messages – Arien to add user stories for review
    • Asymmetric trust relationships – framing issue to be discussed