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Update: NCI CIS Programs Still Ending in January, But Backpedaling on Replacing Partnership Program

doi: 10.1097/01.COT.0000360990.52153.2b
Eric Rosenthal reports:
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Nearly one year after the National Cancer Institute made its behind-closed-doors decision to terminate the partnership and health communications research functions of the Cancer Information Service (CIS) (OT, 11/25/08), the Director of the Institute's Office of Communications and Education, Lenora Johnson, MPH, announced in a newsletter of the Intercultural Cancer Council (ICC) that plans were under way for community outreach as an attempt to fill the gap by the CIS's closure.

That article appeared July 15, actually scooping the Institute's own announcement of a week later, in the NCI Nealon Digest.

A week after that, though, at the final meeting of the NCI CIS Partnership Program, Ms. Johnson told the audience of senior CIS staff from the 15 national regions that the multi-step evaluation process to access needs and resources that she had described in her article had been ended.

This turn-about was alluded to in another Nealon Digest article, which referred readers to a Web site with a list of Frequently Asked Questions “about this exciting new development” (http://cis.nci.nih.gov/ncioutreach.html).

In the time since OT's article last fall, I have continued to follow the aftermath of NCI's original announcement about ending the CIS partnership and research programs and consolidating the 1-800-4- CANCER telephone service as of January, including the various efforts in the cancer community to save the Partnership Program (see box).

In fact NCI acknowledged at the Partnership Program meeting that it had received an unprecedented number of responses about the change, with more than 200 letters, seven Congressional inquiries, and a record number of callers on teleconferences dealing with the decision.

As with the first OT article, some people contacted wouldn't return phone calls, and those who responded preferred to speak off the record saying they feared that criticism of NCI might jeopardize any chance they had for future competitive grants or possible employment since many said they could very likely be without jobs after January when the CIS grants ended.

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‘Evidence Synthesis Panel’

In her article, Ms. Johnson said that NCI had been considering options for community engagement in its outreach and dissemination planning efforts and was grateful to ICC for its support and advice and for the opportunity to provide an update.

Over the past year, she said, NCI shared its plan for developing a new outreach and dissemination concept and had convened an “Evidence Synthesis Panel,” integrating the results into a report that will be presented to a panel of disparities, partnership, and cancer control experts and would seek public input through several forums this fall.

NCI recently approved a community outreach core for the next funding period of its Community Networks Program (CNP) grants, known as CNPII, which would continue to support communities beyond January by providing staff and resources to NCI-funded community-based research programs for outreach, education, and dissemination.

NCI would also expand this capacity through other research programs such as its Community Clinical Oncology Program (CCOP) and Minority Institution/ Cancer Central Partnership (MI/CCP), Ms. Johnson said.

“We expect the transition to be expeditious, with a gap of only a few months between the end of the CIS Partnership Program in January and the award of the CNPII grants in the spring. Our work to develop an outreach and dissemination concept continues, and it is possible this new research-aligned approach will merge with the outcome of our planning process.”

But then in late July came her announcement at the CIS meeting that NCI would not be convening expert and community stakeholder panels, or holding open public forums, and would just pursue funding for existing programs.

One long-tenured CIS regional program director told OT that hearing this just seemed to be “another betrayal” by NCI, adding “it was as if Lenora was thrown under a bus” [by NCI].

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His concerns about the mishandling of the communications and planning processes were also echoed by other CIS officers interviewed.

When I tried to talk to Ms. Johnson at the end of July, she referred me to Sanya Springfield, PhD, Director of the NCI Center to Reduce Cancer Health Disparities. A scheduled interview with the ICC's Executive Director, Jay L. Silver, and its Co-Founder and Past Chair, Armin D. Weinberg, PhD, was canceled because NCI hadn't returned calls for clarification, according to Mr. Silver, who said he'd follow up after they'd learn more; but he never called back.

However, ICC's current Chair, Col. (Ret.) James E. Williams Jr., USA, told OT that he, Dr. Weinberg, and Mr. Silver had met with NCI Director John E. Niederhuber, MD, in March about the Institute's plans to continue outreach to underserved communities throughout the country.

“It was understood after that meeting that ICC and others would be involved in the process of helping determine the new paradigm for community outreach,” Col. Williams said.

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‘National Outreach Network’

Dr. Springfield told OT that NCI had created a National Outreach Network (NON) that incorporated the health educators from the various longstanding programs that have a track record and history within the communities being served, and that this network would connect those outreach workers with the programs, training, and research involved in the outreach dissemination network activities.

Dr. Springfield has oversight for NCI's Center to Reduce Cancer Health Disparities (CRCHD), which includes three of the six programs that will be involved in the new community outreach effort—CNP, MI/ CCP, and the Patient Navigation Research Program (PNRP).

The remaining three programs involved are the Minority Based Community Clinical Oncology Program (MB-CCOP), NCI Community Cancer Centers Program (NCCCP), and NCI Cancer Centers.

For the remainder of fiscal year 2009, funds from the American Recovery and Reinvestment Act (ARRA) will be used to cover 16 community health educator jobs, she said.

That first phase will be followed by administrative supplements to fund the remaining programs in 2010, which should increase the number of health educators to more than 60. This would probably be funded, she said, through a combination of ARRA support and appropriated dollars, if any ARRA funds were left.

Some of these health educators may be individuals now working with the CIS, but there was no guarantee, Dr. Springfield said, since the programs were under the responsibilities of people who have the right to hire whomever they want.

She said one reason she had attended the CIS Partnership Program meeting was to introduce her staff and give the attendees some idea where these opportunities may exist.

“There is a great deal of overlap, and the beauty of this Network is that it pulls together everyone under one umbrella. It's a win-win situation for the community we serve and the NCI.”

Noting that the issues around cancer health disparities are complex and multifactorial, Dr. Springfield emphasized the importance of collaboration: “Often, through no fault of their own, the CIS was not connected to the programs. As far as I know, they hardly ever reached out to the partnership program [within the Center].”

Once NCI began talking about this new concept, she said, it was determined that it belonged more in a programmatic area such as the Center to Reduce Cancer Health Disparities rather than in the Office of Communications and Education.

The Center not only coordinates activities across health disparities but is also a grant-making authority, housing some of the actual programs, so it made “perfect sense to move the function of outreach, which relates to a broader concept being developed at the Center for the last several years called geographical management of cancer health disparities programs,” Dr. Springfield explained.

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‘Needed to Know that NCI Was Truly Committed’

The planning process was terminated because the community needed to have an answer that NCI was truly committed to getting appropriate and timely information out to its vulnerable populations, and the communities wanted to see that tangible steps were being taken, as opposed to a “continual planning effort,” she said.

“As the concept and strategies continue to be developed, our goal now is to put something in place that does not interrupt the services that are desperately needed in our communities when it comes to information, and hopefully we can build on what has been established and create new avenues of communications.”

And when asked about the timing of Ms. Johnson's article publicly stating NCI's plans for the planning process before dropping them two weeks later, Dr. Springfield said that question would have to be directed to Lenora Johnson herself, but when I asked her, she said an answer would have to come from the Office of Media Relations.

Via e-mail, that reply was: “When it became apparent that the extensive planning process proposed by the Office of Communications and Education would not be complete in time to prevent a gap in support to the community, the decision was made to focus our efforts on integrating outreach activities into NCI's numerous community-based research programs. The plan that has been put into place will ensure continued community support at the conclusion of the CIS Partnership Program contracts, and the Institute will continue to seek community input into its outreach efforts through its established channels.”

But still no answer to the question of why the planning process had been made public prior to being cancelled.

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Susan Myers: A Community Advocate Attempts to Save CIS's Partnership Program

When Susan M. Myers, MA, MPH, learned about NCI's plans to terminate the Cancer Information Service's Partnership Program she decided to take action.

Ms. Myers, a public health professional who is President of Maryland-based Health Equity Associates, had first-hand knowledge of the effectiveness of the program when she served as Executive Director for the Southwestern District of the Pennsylvania Department of Health in the late 1990s, as well as in several other not-for-profit and consulting capacities.

One of her responsibilities was cancer control, and she began working with the CIS's Philadelphia office, which provided consultation on regional partnership issues, helped with capacity building, and taught community partners grant writing and evaluation—models that turned evidence-informed practice into evidence-based practice.

She termed the relationship a linkage between community and government, with CIS providing the mechanism to keep both sides connected and making sure the bridge didn't fall apart, as well as helping translate scientific practices into the field.

So when she received an e-mail last year from the CIS's regional office that the partnership program would not be re-competed, she said she couldn't understand how so effective a program could just be ended without any replacement.

She said that NCI's decision last August to end the Partnership Program without any provisions to continue to serve the various communities involved was either “bad planning, no planning, or subterfuge.”

So she wrote to Senator Arlen Specter, for whom she had worked as a staffer in one of his Pennsylvania-based offices in the early 1990s; but unfortunately none of staff followed up over a period of several weeks, and it was about this time that he switched from the Republican to Democratic party to avoid losing his upcoming primary election.

She next wrote to former Senate Majority Leader Tom Daschle, who was then President Obama's nominee for Secretary of Health and Human Services but withdrew his name shortly afterward because of tax problems.

In February, Ms. Myers attended the National Cancer Advisory Board meeting in Bethesda with hopes of asking the Board to convene an expert panel to reconsider the decision to dismantle the Partnership Program.

But she said she was not permitted to speak at the public meeting or distribute any information until it was reviewed.

She explained that by this time she realized she had exhausted all avenues through the chain of command at NCI, and had to take the legislative relief route so she contacted James E. Williams Jr., who was Chair of the Intercultural Cancer Council.

“Jim went to the Pennsylvania Cancer Control Consortium (PAC3), which wrote a letter of support asking for transition funding until the new model could be procured and implemented.”

Ms. Myers created a blog (“Partnershipprogram's Blog—Inspiring action and great, evidence-based public health practice,”http://partnershipprogram.wordpress.com) to keep interested parties apprised of what was happening, and she sent e-mails to various public health officers, to the leadership of various minority health interest groups, and to other cancer lobbying organizations.

ICC referred the action to its Caucus, which contacted the office of Sen. Edward M. Kennedy (D-MA), who had been coauthor with Sen. Kay Bailey Hutchinson (R-TX) of the 21st Century Cancer ALERT (Access to Life-Saving Early Detection, Research, and Treatment) Act Senate Bill 717, which at press time was still in committee.

The next step that Ms. Myers and the ICC Caucus are working toward, she said, is to have the bill reported out of committee with the partnership program transition funding language included.

–ETR

© 2009 Lippincott Williams & Wilkins, Inc.
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