Monday, March 11, 2013

Gone Sailing

The California Stem Cell Report will go dark for a couple of weeks or so as we make our way across the bounding main to Mexico. As many of you know, yours truly lives on a sailboat (15 years come June 1) that shuttles about the Pacific south of the American border. We have spent nearly two years in Panama and are now working our way back to Mexico where the chiles are hot and the frijoles “rico.” Look for fresh coverage either late this month or early April.  

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Sunday, March 10, 2013

Cyberspace Makeover at California Stem Cell Agency

California's $3 billion stem cell agency has performed a well-done makeover on its most important public face – its web site, which is chock-a-block full of useful information for researchers and the unwashed alike.

At cirm.ca.gov, one can find the very words of its directors as they wrestle with everything from grant approvals to conflicts of interest. Scientists can be seen telling the story of their accomplishments. Money can be followed, and summaries of reviews of grant applications read, both those approved and those that did not pass muster.

The web site of the California Institute of Regenerative Medicine (the formal name of the agency) is the place where the stem cell program really meets the public. News stories are important, but infrequent. Day to day, however, thousands of interested persons seek out information that the folks at CIRM HQ, just a long throw from the San Francisco Giants ballpark, bring to cyberspace.

Each month, said Amy Adams, major domo of the web site, 15,000 to 17,000 “unique viewers” visit online. She told the California Stem Cell Report in an email,
“We're up about 25 percent year over year in unique viewers to the site. A lot of that growth comes from search, and the rest is from traffic driven through our blog and Facebook.” 
The numbers are not huge compared to those chalked up by major media sites. But they are significant given that there are only a few thousand people worldwide who are deeply and regularly interested in stem cell research. Many more, however, are stimulated to look into the subject from time to time, either because of news stories, personal, disease-related concerns or simple interest in cutting edge science. Engaging those readers, who can spread the CIRM story, and winning their approval is critical for the agency as it faces the need to raise more millions as it money runs out in the next few years.

CIRM has mounted much information online over its short life. So much that good tools are needed to navigate the site. Decisions about what should go on the home page are critical. With the makeover, the agency now has a long-needed, home-page link to its meetings , especially those of its governing board, which are the single most important events at the agency.

The redesign is crisp and clean. The new, white background makes it easier to read and is comfortable for readers long conditioned to the black-on-white print of the books, newspapers and magazines. The video image on the home page is larger, which helps attract viewers. The site has long had a carload of videos, some of which contain powerful and emotional stories from patients.

Adams used CIRM staffers to test the new features. She reported,
“I've had people inside CIRM (who have been beta testing this site) tell me that they are finding content they'd never seen before because the site is so much easier to navigate.”
Adams and the CIRM communications team also have pulled together important information on each grant on a single page, including progress reports. You can find a sample here on a $1 million grant to Stanford's Helen Blau.

Adams said,
 “Now people can not only read about what our grantees are hoping to accomplish, they can read about what has actually been accomplished with our funding.”
Adams said another new feature is downloadable spread sheets of information that can be manipulated by readers offline. She said,
“Most places on the site where you see tables, you can now download those tables to Excel. You'll notice the small Excel icon at the lower left of the table. This feature has long been available for the searchable grants table. Now you'll see it on all the tables of review reports (see here for example http://www.cirm.ca.gov/application-reviews/10877) on the disease fact sheets (see here http://www.cirm.ca.gov/about-stem-cells/alzheimers-disease-fact-sheet) and other places throughout the site. This is part of an effort to make our funding records more publicly available.”
CIRM's search engine for its web site still needs work. A search using the term “CIRM budget 2012-2013” did not produce a budget document on the first two pages of the search results. A search on the term “Proposition 71,” the ballot initiative that created CIRM, did not provide a direct link to its text on the first two pages of search results.

Also missing from the web site, as far as I can tell, is a list of the persons who appointed the past and present board members as well as the dates of the board members' terms of office. The biographies on some of the 29 governing board members come up short. In the case of Susan Bryant, her bio does not mention that she is interim executive vice chancellor and provost at UC Irvine. Links also could be added to board members statements of economic interest. A list of CIRM staff members (only slightly more than 50 persons) and their titles could be added.

As for CIRM's count of visitors, CIRM uses Google Analytics tools. Adams said,
“A unique visitor is Google's definition (it's one of the metrics they provide). It's a visit from a unique IP (internet protocol) address. So, if you visit our site multiple times from one IP address during a day, you count as a single unique visitor. (Editor's note: It is possible to have more than one visitor from the same IP address.)
“We get ~23,000-25,000 visits per month, or ~16,000-18,000 unique visitors. Page views are on the order of 65,000 a month.”
Our take: The redesign of the web site is a worthy effort and enhances CIRM's relationships with all those who come looking for information. The agency is to be commended and should continue its work to improve the site and its connections with the public.
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California Stem Cell Directors to Finalize IOM Response Next Week

Directors of the California stem cell agency will meet March 19 in Burlingame to complete action on their response to blue-ribbon recommendations for sweeping changes at the eight-year-old research enterprise.

CIRM Chairman J.T. Thomas last week told the San Diego U-T editorial board that he regarded approval as “largely ministerial.”

Thomas has been visiting newspaper editorial boards around the state, touting his plan, which was initially approved by the board in January. The main focus has been on its provisions dealing with conflicts of interest, which would have 13 of the 29 governing board members voluntarily remove themselves from voting on any grant applications. The 13 are linked to recipient institutions. Two other board members linked to recipient institutions also sit on the board.

About 90 percent of the $1.8 billion that has been awarded by the CIRM board has gone to institutions linked to past and present members of the board.

In December, the Institute of Medicine cited major problems with conflicts at the stem cell agency. It recommended creation of a new, independent majority on the board, which would mean that some members would lose their seats. The IOM report also recommended a host of additional changes that have become eclipsed by the controversy about conflicts, which were built into the board by Proposition 71, the ballot measure that created it in 2004.

An analysis in January by the California Stem Cell Report of the IOM report, which CIRM commissioned at a cost of $700,000, showed that agency's response fell far short of what the IOM proposed to improve the agency's performance.

Also on the agenda for the March 19 is approval of applications in a $30 million effort by the agency involving reprogrammed adult stem cells. The agency said the goal of the initiative is “to generate and ensure the availability of high quality disease-specific hiPSC resources for disease modeling, target discovery and drug discovery and development for prevalent, genetically complex diseases.”  
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San Diego Newspaper Hails Stem Cell Agency and IOM Response

The $3 billion California stem cell agency hit it big in San Diego today, finally scoring an editorial that said “arguably” the agency's largess has made the state “the world leader in medical research.”

The San Diego U-T, the largest circulation newspaper in the area, said the big headline about the eight-year-old agency is “the potential for transformative medical breakthroughs.”

The editorial noted that the agency has long been criticized in connection with conflicts of interest. About 90 percent of the $1.8 billion the agency has awarded has gone to institutions linked to current and past members of its board of directors.

But the agency “is finally taking the criticism seriously,” the newspaper said. It cited proposals that would, if approved later this month, have 13 members of the agency's governing board voluntarily abstain from voting on any grants that come before the board. Twenty-nine persons sit on the board. The thirteen are connected to recipient institutions. Two other board members are linked to recipient institutions.

The stem cell business is no small matter in San Diego, which is one of California's hotbeds of biotech and stem cell research. The stem cell agency has awarded about $338 million to San Diego area institutions and businesses. Four executives from San Diego area institutions sit on the CIRM board.

The newspaper's editorial said,
“There remains a residue of cynicism about CIRM. Critics say the agency board did the minimum necessary to avoid an intervention by the Legislature – and also acted to buff the agency’s image should it seek more bond funding from California voters before its present funding runs out in 2017, as is now projected.
“These views may have some merit. But on balance, we think the California Institute for Regenerative Medicine has – at long last – responded properly to the fair criticism it faced. Instead of being exasperated by CIRM, more people should be excited about the great work it is doing.”
The editorial followed a meeting involving the editorial board of the newspaper, CIRM Chairman Jonathan Thomas and Larry Godlstein, director of the UC San Diego stem cell program. The meeting was part of a CIRM campaign to generate newspaper support for the agency's response to sweeping recommendations from a blue-ribbon study by the Institute of Medicine. The San Diego editorial is the most effusive so far.

The newspaper's biotech reporter, Bradley Fikes, sat in on the meeting and Saturday posted video excerpts from the discussion, including a brief written summary of the content of each clip.
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Thursday, March 07, 2013

Public Banned from 'Best Stem Cell Meeting in the World'

“The best stem cell meeting in the world” is underway today in San Francisco – conducted at taxpayer expense – but the public is barred from attending.

More than 500 persons are at the meeting at an undisclosed location, including some representatives of biotech firms. And the meeting is even being written about on the internet by a blogger. But the $3 billion California stem cell agency says the public is not allowed in because some of the information is “proprietary.”

CIRM President Alan Trounson addressed the meeting earlier this week and declared it was “the best stem cell meeting in the world,” according to UC Davis researcher Paul Knoepfler, who is reporting from the session on his blog.

The attendees consist almost entirely of the recipients of taxpayer-funded grants given by the stem cell agency  although a number of businesses have been brought in.. CIRM, which is paying for the gathering,  says of the annual sessions,
 “The purpose of meeting is to bring together investigators funded by CIRM, to highlight their research, and encourage scientific exchange and collaboration.”
Kevin McCormack, spokesman for the agency, today said the public was barred from the meeting, which ends tomorrow, because “so many presentations/talks (are) using proprietary information.”

That rationale is nothing new in the world of science. But there is no chance of maintaining secrecy about anything that is truly proprietary when hundreds of people have access to it in this sort of forum. No penalties exist for disclosure, plus the whole point of the session is to share information.

Yesterday we wrote briefly about the importance of transparency and openness in government, and make no mistake about it, the stem cell agency is a government operation. We doubt that anything egregious is underway at the session, but closing it to the public is a reminder about where the agency's priorities lie.  
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Wednesday, March 06, 2013

Good News, Bad News and the California Stem Cell Agency

A few weeks ago an anonymous reader admonished the California Stem Cell Report to be more positive about the $3 billion agency and its efforts to develop the cures that its backers promised California voters more than eight years ago.

The comment was thoughtful and pointed out that “almost all the time” the agency “has done the right thing.” The reader made the remarks in the context of continuing coverage of the Institute of Medicine (IOM) report that found there were major flaws in CIRM's operations. (The reader's comment can be found here at the end of the post.)

Given the reader's remarks, it seems a good time to review the operating principles and biases of the California Stem Cell Report.

Bias No. 1: Openness and transparency come first in any government operation. They are fundamental to the integrity of all government enterprises. Bias No. 2: The California stem cell agency is generally doing a good job at funding stem cell research. We generally favor all manner of stem cell research. 

Regarding our operating principles, the goal is report news and information about the agency along with analysis and explanation. One key to understanding what this blog does is to understand what news is. News by definition is almost always “bad” as opposed to “good.” News deals with the exceptional. It is not news that millions of drivers commute to work safely each day on California freeways. It is news when one is killed in a traffic accident.

The California Stem Cell Report also tries to fill information voids. We understand that the stem cell agency believes certain information is not in their best interests to disclose. Such is always the case with both private and public organizations. However, it is generally in the public interest to see more information rather less, particularly information that an organization would rather not see become public.

Analysis and explanation of what the stem cell agency does is rare in the California media and even less seen nationally or internationally. This blog focuses primarily on the public policy aspects of the agency – not the science. The agency is an unprecedented experiment that brings together big science, big government, big academia, big business, religion, morality, ethics, life and death in single enterprise – one that operates outside the normal constraints of state agencies. No governor can cut CIRM's budget. Nor can the legislature. Even tiny changes in Proposition 71, which created CIRM, require either another vote of the people or the super, super-majority vote of both houses of the legislature and the signature of the governor. All of this is the result of the initiative process – a well-intended tool that has been abused and that has also created enormous problems for the state of California that go well beyond the stem cell agency.

Then there is the funding of the agency, which basically lives off the state's credit card. All the money that goes for grants is borrowed and roughly doubles the actual expense to taxpayers.

Since January 2005, we have posted 3,452 items on the stem cell agency because we believe the California Institute for Regenerative Medicine (CIRM) is an important enterprise – one that deserves more attention that it receives in the mainstream media. Our readership includes persons at the NIH, the National Academy of Sciences, most of the major stem cell research centers in California, academic institutions in the Great Britain, Canada, Norway, Germany, Russia, China, Australia, Singapore and Korea – not to mention the agency itself and scientific journals.

We do not attempt to replicate what the California stem cell agency itself does, which is to post online a prodigious amount of positive stories and good news about the agency. To do so would serve no useful public purpose and would simply be repetitive. That said, there is room to acknowledge the work that the agency does, particularly the staff, but also the board. We try to point that out from time to time.

The California Stem Cell Report also welcomes and encourages comments, anonymous and otherwise. Directors and executives of the agency have a standing invitation to comment at length and have their remarks published verbatim, something almost never seen in the mainstream media.

Finally, given the questions raised by the Institute of Medicine about disclosure of potential conflicts of interests, the author of this blog and his immediate family have no financial interests in any biotech or stem cell companies, other than those that may be held by large mutual funds. We have no relatives working in the field. We do have the potential personal conflicts, cited generally by the IOM in connection with some CIRM board members, involving relatives who have afflictions that could be possibly be treated with stem cell therapies in the distant future.   
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