Wednesday, January 23, 2013

CIRM Board Member Cites Valuable Role of Patient Advocates

Jeff Sheehy, a patient advocate member of the governing board of the California stem cell agency, last month said the Institute of Medicine was recommending what amounted to "defenestration" of the 10 patient advocate members on the board.

Following a staff presentation this morning on the scientific progress of the agency, Sheehy took the opportunity to point out that several of the programs highlighted were only underway because of efforts patient advocates or appeals by rejected applicants.

Sheehy, who is vice chairman of the CIRM grant review group, said "programmatic" reasons advanced by patient adovocates led to the group's approval of two of the programs. Two more of the highlighted awards were rejected by grant reviewers but only approved by the full board after the applicants appealed using the agency's extraordinary petition process.

The IOM has recommended that the petitions be eliminated because of the threat they pose to the scientific peer review process. It has also recommended that the board not vote on individual grants -- only a slate approved by reviewers. The IOM additionally has recommended major changes in the role of patient advocates on the board.

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