Executive Sub Comittee Meeting

Approval of minutes

ACTION: Representative Murphy motioned to approve the minutes seconded by Karl Nelsen.  Motion passed 3/4. Representative Reyer abstained as she was not present at the last meeting.

Ongoing Business

Governance Taskforce Updates

Director Barnes noted that the GTF is close to having some draft documents completed.  The goal is to have them completed by the July RDAC retreat.  The quadrant that is the furthest from completion is the Ends planning which will be addressed at the retreat in July.

Council Terms and Vacancies

The Governor’s office is working on current vacancies and all vacancies have applicants.  The new appointments, once made by the Governor’s office will begin in January.

Proposed Process for Engaging with the PDAB/DFC

Director Barnes opened the discussion with inviting DFC to come and present to the Council, rather than set out a process.  She stated that to engage these Boards and Councils from a place of understanding of how our Council will be helpful to them and establish a trust for our Council to advise.  When we are appointed to a Board or Committee, we are responsible to be respectful of their process to build credibility.  A brief discussion was had to this suggestion and the overwhelming response was positive.  No negatives to this approach were raised.  Director Barnes will reach out to the DFC with this request.

A possible proposal to the DFC could be to host community listening sessions by the rare Disease Council and invite DFC committee members to listen, similar to efforts by groups that host listening sessions for the FDA.  They attend listening sessions and do not participate, simply to hear information and community feedback.  If the DFC is not willing to present to our Council, this may be an invitation we can propose to help them gain perspective on the rare community.  Concerns were raised about the Council’s capacity to sustain something like this as more and more rare disease drug approvals hit the market.

As our Council evolves and interacts with other state agencies and regulatory boards, we will continue from a place to seek to understand and build trust.

New Business

Conflict of Interest

Rep Murphy raised a question related to conflict-of-interest disclosure and whether these should be done annually or as potential conflicts of interest arise by members. This should be discussed further to identify a process.

Council Training Options (data practice, open meeting law, etc…)

Director Barnes talked about the training needs of the Council.  Some members, such as the Chair may need to become more familiar with the basics of Robert’s Rules, OML, etc… It was discussed that every member may not require the same amount of training, however, making those learnings available and keeping track of the learnings received by each member will be helpful.  Some members will be willing to attend webinars and others will not.  There are some requirements that every member needs to understand.  The outstanding item here is the conflict-of-interest form.

Full Council Retreat

The RDAC Full Council Retreat is scheduled on July 18, 2024 from 9am to 5pm and will be held in person only at the Wilder Center in Auditorium A.  Cultivate Strategy will be hosting this meeting and attendance is necessary for this session.  The evolving, proposed agenda was presented to the subcommittee.  Quorum is the issue surrounding the attendance need and we can hold official business (which will be minimal) at the beginning or the end of the meeting.  Our feedback regarding the May meeting has been heard by Cultivate Strategy and they are taking it into consideration while developing the agenda for July.

Attendance Reporting

Director Barnes stated that Staff is now providing an attendance report to the Chair following every meeting.  We are keeping track of who is missing meetings and that when two (2) meetings in a row are missed, a letter will go out to that member.  This letter will inform them that a third missed meeting will result in a letter to the Governor.  That letter will come from the Chair.

State Entities to Engage in Council/Invite to Meetings

This item was discussed in the proposed process for engaging with the PDAB/DFC. See above.

Public Comment

Hearing none