Executive Sub Comittee Meeting

Approval of minutes

ACTION: Chair Gaviglio made a request for a motion to approve meeting minutes from December 12, 2023.  A change was requested by Karl Nelsen that the Carver model was not voted on, but rather there had been a request to review a modified version of the Carver Model and to vote on adoption after review.

Motion by Representative Reyer to approve the minutes with the amendment and seconded by Representative Murphy. Approved. Roll call vote 6/6.

Executive Director Update

Director Barnes reported that the gene therapy listening/learning session has been scheduled for February 1, 2024 at 12PM.  The presenters will represent the pharmacology industry as well as the medical profession with a patient/caregiver perspective.  It was noted that an in-person session would be beneficial, however the session was set up for a virtual audience.  Moving forward it has been requested that the Council offer in person as well as virtual options. Director Barnes will explore the viability of a hybrid meeting.

Director Barnes reported that the Governor’s office contacted the Council regarding the Prescription Drug Advisory Board.  They have requested that RDAC get involved with PDAB on a voting level as well as an advisory level.  RDAC needs a volunteer from the Council to place a member on the PDAB as an advisor without voting privileges.

ACTION: Executive subcommittee to review current Rare Disease Advisory Council membership and make suggestions prior to a formal appointment.

Director Barnes reported that there has been no further news from the Governor’s office regarding RDAC appointments.

Ongoing Implementation of Governance Work/Progress Made

A governance task force (GTF) has been started and Member Jackie Foster is leading the group.  The task force has been supplied with governance documents from other agencies as well as Carver Model documents.  The work has begun and will continue to move forward.

GTF is proposing to use Box as a sharing platform for the documents that are being worked on for governance.  Data practice policies such as data retention fall under state guidelines.  A vote is needed to use Box as a sharing platform.  A proposal was made that if a Box account is to be used, Members and staff need to make sure that no FINAL documents (records) are stored long term in the Box account.  Final drafts and final documents are to be sent to staff with working drafts and documents then being deleted from the Box account. Members can be held personally responsible for violation of retention policies.

ACTION:  A request for a motion was made that ‘Box’ will be used for work on Council-related documents.  A motion was made by Representative Murphy and seconded by Karl Nelsen to use Box as a sharing platform for Council work, specifically, the GTF. Approved.  ROLL CALL 6/6.

Agenda for Full Council Meeting on January 18, 2024

The agenda for the Full Council meeting was discussed and finalized following additions related to upcoming legislative and committee activities.

A new business item was presented by Director Barnes.  Senator Morrison sent a proposed draft of legislation that would provide structural changes to the council.  Director Barnes requests that the executive subcommittee review the draft changes to ensure that they align with the legislative goals the Council has identified for the upcoming legislative session.

ACTION:  A motion was made by Karl Nelsen and seconded by Representative Reyer to approve the Full Council agenda with proposed amendments. Approved.  ROLL CALL 6/6.