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Legal Task Force - Patient Consent Work Group Minutes - January 27 2011 

January 27, 2011

Attendees (phone and in-person):

  • Committee Members Who Attended in Person:
  • Mark Chudzinski, Office of Health Information Technology (OHIT)
  • Evelyn Hoffmann, Hoffmann, Lerman & Associates
  • Carolyn Metnick, Barnes & Thornburg
  • April Schweitzer, OHIT
  • Julie Treumann, Ungaretti & Harris
  • Committee Members Who Attended by Phone:
  • Rob Connor, Department of Human Services
  • Janet Lerman, Hoffmann, Lerman and Associates, LLC
  • Marilyn Thomas, Department of Healthcare and Family Services

Marilyn, as chair of the Patient Consent Work group, welcomed people to the call at 3:02 p.m., hosted by OHIT at the State of Illinois J.R. Thompson Center in Downtown Chicago, with a telephone conference call-in number. Mark noted that notice of the meeting and the agenda were posted on the OHIT Web site and at the Chicago, meeting location no later than 48 hours prior to the meeting. He also thanked work group members for their non-binding advice, and Marilyn Thomas for agreeing to chair the group. Roll was taken, and the ability of those attending by telephone to hear and participate was confirmed.

Mark Chudzinski gave an overview of OHIT, and presented the goal of the HIE Legal Task Force as identifying shortcomings in Illinois laws that impede health information exchange, and proposing solutions to such shortcomings. He noted that OHIT is actively seeking the involvement of knowledgeable individuals from the private sector in providing non-binding advice with respect to the challenges presented by Illinois law for the development of health information technology in the State of Illinois. The HIE Legal Task Force will solely provide non-binding advice to OHIT, which will have exclusive authority in its absolute discretion to adopt, or reject, any such advice. (In turn, any recommendations that may be made by OHIT to the Illinois General Assembly and/or the Illinois Health Information Exchange Authority (currently in formation) ("HIE Authority") are purely advisory, and may be accepted or rejected by such other bodies in their sole discretion.) All workgroup discussions and work product of the Task Force will be both "vendor-neutral" and "client-neutral;" the Task Force will not will not assist the State of Illinois, OHIT, the Authority, or any other State of Illinois agency in reviewing, drafting, or preparing a request for proposal or request for information relating to State of Illinois procurements, or in determining whether there is a need for a contract to be entered into by the State of Illinois, OHIT, the Authority, or any other State of Illinois agency. The Task Force will not review or discuss any vendor-specific solutions that may someday be considered for procurement by the State of Illinois, OHIT, the Authority, or any other State of Illinois agency. The Task Force will not participate in the making of any regulatory or licensing decisions of the HIE Authority, or of any other State of Illinois agency.

Mark then provided background on the HIE initiative in Illinois. He discussed the Office of the National Coordinator (ONC) January report, that shows a sudden and significant increase in the anticipated adoption by healthcare providers in U.S. (and Illinois) of EHRs. Illinois is committed to facilitating HIE within the state to enable Illinois providers to receive federal "meaningful use" incentive payments, and to improve patient care, improve population health and reduce costs.

Mark then informed the group of the steps the state has taken over the last two years, including the formation of OHIT in 2009, the passage of the ILHIE Authority in 2010, and the formation of a new Illinois agency. He stated that the Authority will operate a state-level HIE and regulate HIE development and implementation. The current strategy is to encourage local/regional HIE formation and to leverage non-state resources.

Additionally, the state is committed to providing certain core services to maximize EHR adoption, including a master patient index, a record locator service and directories for providers, payers and public health. There will be six (6) operational (fully or partially) HIEs in 2011. The MetroChicago Health Information Exchange (MC-HIE) will be the first, in the Spring of 2011. The rest will likely launch in the Fall of 2011.

Mark spoke about some privacy and security issues the group may contemplate. He said that one necessary (but not sole) factor to ensure the success of HIEs is for the HIE to secure both provider trust and public/patient trust. Providers want trustworthy and complete data on which to base clinical diagnosis of patients and plan of care while patients want (in varying degrees) assurance that patient data, particularly those portions which are subjectively considered by individuals to be "sensitive," is not used in a manner which harms the economic or reputational interests of the individual.

Mark also addressed the patient consent issue, which asks how much control Illinois consumers should have over the access, acquisition, disclosure, or use of their personal health information contained in an electronic health record (EHR). There are five (5) basic consent options, applied at either (1) collection and deposit of the PHI into a database, and/or (2) at the time of accessing the PHI in the database. They are as follows:

  1. No patient consent – all information stored and/or accessible
  2. Opt out – automatic deposit into HIE unless patient objects
  3. Opt in – no deposit into HIE unless patient affirmatively consents
  4. Opt out with exceptions – patient given "granular" choice of sequestering data
  5. Opt in with exceptions – patient given "granular" choice of choosing which data goes into the HIE

Additionally, Mark addressed some of the work that has been done prior on this issue, which the work group might build upon. He described the Health Information Security and Privacy Collaboration (HISPIC), which is a collaboration of approximately 33 states, in an attempt to coordinate state-level initiatives in the absence of federal funding and/or leadership on the issue.

HISPC-IL 1 (June 2006-April 2007)

  • Coincided with the deliberations of the Illinois Electronic Health Records Task Force (report forwarded to Illinois General Assembly, December 27, 2006)
  • Work product: Five (5) reports (all posted on Illinois DPH site)

HISPC-IL 2 (August – December 2007)

  • Work product: "HISPC-Illinois Implementation Project Summary and Impact Analysis Report," November 30, 2007. This report was distributed to the work group for review.
  • Appendices IV and V include forms that were developed in 2007. The work group will want to review the forms and update them to include the re-transmission of data from HIEs.

HISPC-IL 3 (2009)

  • Work product: "Intrastate and Interstate Consent Policy Options Collaborative—Final Report," March 31, 2009 [California, Illinois, North Carolina, Ohio]

Mark also suggested some questions the work group might address including:

  • Federal HIPAA amendments (2010) that may require amendment of NPP.

  • HITECH Proposed Rule (July 14, 2010) introduces patient right-to-restrict disclosure of PHI to a health plan when services are paid out-of-pocket in full (45 CFR 164.522(a), and expand patient's right to obtain from provider PHI in electronic format (45 CFR 164.524). Will patient consent forms and Notices of Privacy Practices currently in use need to be modified accordingly?

  • Will consent continue to apply when a recipient named thereon is acquired and/or merges into another organization?

  • Can a party identified by name on a consent delegate/share/redisclose PHI to another provider providing on-call coverage or to other members of a coordinated multi-provider medical home/care team, including non-medical personnel (e.g., counselors, mental health professionals, and other staff who are not physicians, nurses or EMTs)?

  • How should Illinois laws accommodate a patient's revocation of previously granted consent(s)?

  • Can these consent templates/forms be accommodated in a non-paper patient consent management workflow?

Marilyn thanked Mark for his comments and asked for member input. The group agreed that the HISPIC documents are a good starting point and that a lot of the work has already been completed.

Marilyn gave a brief background on NPPs and then asked if anyone had further information on how HHS is proceeding with the high tech rule since it will affect NPPs and consent authorization.

Marilyn addressed how HISPIC approached consent and reported that there was a significant amount of discussion about whether there needed to be more than one document, and the group concluded that there needed to be two documents, one for consent and one for research.

Rob agreed to take careful look at the forms based on changes in the mental health code.

Marilyn asked people to look for examples of consent forms that are out there, in relation to HIEs, and said she would provide some consents from other states.

The group discussed whether consent forms need to address both identified information as well as de-identified information, and the impact on research if they do not. The group also briefly talked about the layers of consent, and whether there needs to be a separate consent for multiple HIE systems (i.e., regional, state).

Marilyn reviewed a letter from National Committee on Vital and Health Statistics (NCVHS), and noted that there are several different categories of sensitive information that the work group may want to consider identified in the letter. Rob agreed to forward a slide presentation and statutory authority on a prescription monitoring program, which does not require any consent.

The group agreed that looking at statutory updates in order to update NPPs and consent forms was how they wanted to proceed.

Mark informed the group that there will be a presentation on March 3, 2011, on the architecture of HIE in Illinois. Marilyn agreed to send out an e-mail about the next meeting, and the group agreed that Thursday afternoons work well.

There was no public comment offered in response to Mark's invitation. The meeting adjourned at 4:06 p.m.