As Our Children Wait – Part 3

AsOurChildrenWaitPart3_edited-2Childhood cancer has been on the rise since the 1970s, a White House task force was formed in the 1990s to look at the underlying causes of children’s health issues.

Episode 1 provided an overview of the Children’s Health Act (CHA) of 2000, legislation authorizing expanded research regarding childhood health issues including childhood cancer. Episode 2 examined the National Children’s Study (NCS), a major initiative of the CHA. After 14 years, the NCS study design remained problematic and with next to nothing to show for the $1.2 billion in taxpayer dollars invested, the Director of NIH cancelled the children’s study.

In Episode 3 we focus on questions of priority setting, strategic planning, accountability and transparency.


A little introduction to what is often called the Results Act and why it matters to the public. Officially named the Government Performance and Results Act (GPRA) of 1993 (and enhanced by the Modernization Act of 2010), the Act was meant to address a range of concerns about government accountability and performance.

GPRA intended to improve confidence in the Federal government and provide the American people with information about the results of government. Agencies are required to develop strategic plans that describe goals, objectives and expected outcomes of activities and to use this information to set priorities and formulate budget requests. GPRA is unique in that the agencies are required to annually analyze results, determine value of results, and integrate that information into the budget decision process.


Think of it this way, in the private sector corporations have investors and shareholders. In the public sector, Federal agencies are financed by our tax dollars. We are the investors and as such, agencies have a responsibility to the taxpayer financing government operations. As an investor in agencies, we should have a kind of voting right in the direction agencies are taking. GPRA requires agencies to communicate externally as they develop strategic plans. Agencies are required to conduct outreach to the public, shareholders, and with Congress as they develop strategic plans and set priorities.

Taxpayers, the investors, have ownership in Federal entities and our dividends are the results or outcomes. That is, what we expect agencies to deliver with the investment of tax dollars. Agencies are required to develop annual plans as part of their budget requests, and tie their budgets to programs and outcomes. Projected outcomes should make sense in terms of what the public needs and wants, cost benefit should be part of the equation and the public should be aware of and satisfied with their return on investment.

As an investor, we have a right to inspect the books. Current legislation requires that agencies produce financial statements and audits as part of their annual reporting process and that this information be available to the public.   All of this information, strategic plans, budget requests, annual performance plans, annual performance reports, financial statements are required to be transparent to the public and available through

As an investor we have a right to demand accountability for poor management. In the private sector, this is the right to sue, in the public sector this is part of the performance management process for senior managers of the government. The Senior Executive Service (SES), managers who run Federal agencies, receive annual performance ratings that are based on how they deliver on agency GPRA goals, objectives and results.

So in a nutshell, the taxpayers should be included in the priority setting process, have transparency about products, services, outcomes delivered, and a right to demand accountability for mismanagement.


The NIH is made up of 27 Institutes and Centers (ICs) and has a budget of approximately $30 billion, 80% of this supports extramural research.   In 2014 Congress asked the Government Accountability Office (GAO) to review NIH funding related to leading disease and health conditions and determine how priorities are set. The GAO is an independent, nonpartisan agency that works for Congress, often called the “congressional watchdog,” investigating, at the request of Congress, how the federal government spends taxpayer dollars.

As part of its review GAO investigated how research priorities are set at NIH and how allocation decisions about research funding are made across selected diseases and conditions. The GAO review looked at the five ICs with the largest funding base, one of the ICs scrutinized was the National Cancer Institute (NCI). Interestingly, GAO found that each individual IC sets its own research priorities. ICs revealed that since potential research projects exceed available funds, all five set priorities in a similar fashion — considering

  • scientific needs and opportunities
  • gaps in funded research
  • burden of disease
  • public health need

All five ICs advised GAO they had strategic plans in place for individual centers. ICs also indicated they considered input from stakeholders and looked to NIH leadership to provide overarching direction in terms of setting priorities.


Recently we tried to find the strategic plan for the National Cancer Institute (NCI), one of the ICs studied by GAO. Even though the NCI advised GAO that they had a strategic plan, we couldn’t locate it behind the strategic plan link on the NIH website. When we inquired about the NCI strategic plan this is the response we received from the NIH Office of Advocacy Relations —

“the specific requirements of apply at the agency level—in this case to the Department of Health and Human Services (HHS), which oversees the National Institutes of Health and therefore the National Cancer Institute.  While the HHS plan needs to meet specific GPRA reporting format and requirements (and does), other levels within an agency are not required to follow that same format.  HHS streamlined GPRA reporting in 2011; NIH and other Operating Divisions/Staff Divisions no longer have to publish individual GPRA plans/reports.”


Interestingly, Dr. Collins appeared before the Senate sub-committee on appropriations on April 30, 2015 and advised the Senate that NIH was working on an overarching strategic plan for the entire Institute. He went on to say that “each IC has its own strategic plan in place” but we are working on a comprehensive NIH strategic plan that will be sent to the Senate by December 2015. Actually, NIH is working on this strategic plan and submitting by December 2015 because that’s what is required by law in their 2015 appropriations Bill — not because they decided to do it themselves. In the 2015 Omnibus Appropriation Bill Congress required, “NIH shall submit to Congress an NIH-wide 5 year scientific strategic plan as outlined in sections 402(b)(3) and 402(b)(4) of the PHS Act no later than 1 year after enactment of this Act.”

Congress has increased inquiry about how NIH sets priorities and makes funding decisions. In the past, Congress has left setting priorities to NIH and has done very little questioning about how the science community at NIH determines what to fund. Thankfully,  some members of Congress have begun to pose questions regarding the soundness of this past practice.


Fulfilling the requirements of GPRA can be powerful strategy for solving government performance and addressing priorities. In government, as in our personal lives, we have infinite needs, wants, desires and finite resources.

Strategic plans are meant to make visible to the public the goals, objectives and expected outcomes of Federal agencies. They should serve as a roadmap for agencies in their annual planning process and help agencies determine what programs are making progress towards goals and what programs need to be ditched because they aren’t delivering or cost too much. The public should have a good idea about outcomes that agencies are moving towards, understand progress made and costs necessary to achieve results.

In addition to GPRA requirements, the White House issued an open government directive in 2009 seeking to increase transparency, participation and collaboration. Its message to agencies says, transparency promotes accountability by providing the public with information about what the Government is doing. Participation allows members of the public to contribute ideas and expertise so that their government can make policies with the benefit of information that is widely dispersed in society. Collaboration improves the effectiveness of Government by encouraging partnerships and cooperation within the Federal Government, across levels of government, and between the Government and private institutions.

In this series we’ve presented some legal requirements for strategic planning, external consultation required when setting goals and objectives, how the strategic plan ties to budgets requested, and the condition that all of this informs how agencies set priorities.

In the next episode we will finish with an overview and consider what all of this means as you look at the picture of legislation, requirements and taxpayer expectations. We will consider where we are today, how we might reinforce our argument that childhood cancer research should be a national priority and talk about what you can do to help change this picture for kids. Stay tuned…………

Author: Donna Carroll Carmical

Want to help make childhood cancer a priority? Ask lawmakers who help determine the budget for the National Cancer Institute for more than 4% of the research budget is one way to show support.

Related Articles:

AsOurChildrenWait_edited-1As Our Children Wait – Part 1


AsOurChildrenWaitPart2_edited-1As Our Children Wait – Part 2



Moving the Needle to #MoreThan4

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1 Response to As Our Children Wait – Part 3

  1. Pingback: As Our Children Wait – Part 4, Conclusion | Four-Square Clobbers Cancer

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