On Friday, October 21, the Commission on Evidence-Based Policymaking will hold its first public hearing in Washington, D.C. It is the first of three planned hearings across the country to hear from stakeholders about the Commission’s work. The goal of the Commission is to develop a strategy for increasing the availability and use of data to develop evidence about government programs.
The commission is accepting requests for oral statements through today, and welcomes written statements from stakeholders as well. There is also an open Request for Comment from the Commission that closes on November 14. As of the end of Saturday, October 15 a whopping 8 comments have been submitted to that request (none have been posted as yet).
Friday’s hearing is the third public meeting of the Commission, which intends to hold two more meetings by the end of this year. The two additional stakeholder hearings are planned for early in 2017. One will take place in the western U.S. and the other in the center of the country. The Commission has an expiration date of September 2017, so it is interested in working quickly. If you have information that should come before the Commission, you should work quickly as well.
Earlier this month the Commission on Evidence-Based Policymaking published a Request for Comment in the Federal Register. The request is general in focus, seeking to gather information on a variety of topics that the Commission is obligated to examine under its mandate. Submissions are due by November 14.
That mandate, and the Commission, was a creation of Congress. The fifteen-member commission has until September of 2017 to complete its work. It will prepare a report for the President and the Congress providing its recommendations after conducting
“[A] comprehensive study of the data inventory, data infrastructure, data-base security, and statistical protocols related to Federal policy-making and the agencies responsible for maintaining that data.”
The bill is resource focused. While there is a provision in the bill to include recommendations on particular evidence-based policymaking techniques such as randomized control trials, the focus in the bill is on optimizing existing data resources and making them more accessible for the purposes of program evaluation.
Back to the Request for Comment. The questions are focused primarily on data, whether it’s data infrastructure and security or how survey and other statistical data can be integrated into program design, analysis and evaluation.
The Commission has met twice since its formation, with the first meeting focused on overall goals and work plan, and the second meeting focused on privacy. Regrettably the Commission website appears to suffer from some link issues.
Today the Cancer Moonshot Blue Ribbon Panel submitted its report to the National Cancer Advisory Board (H/T The Guardian). Appointed in April, the panel was tasked with providing recommendations on how to best advance the broad goals of the Cancer Moonshot, which is focused on improving detection, treatment and prevention of cancer. Specifically, the Moonshot is focused on better using the existing resources of public and private entities involved in cancer research and treatment to make it accelerate advances against the various forms of the disease.
The panel divided the topic into seven broad topics, and there are recommendations in the report from each area. They are:
- Clinical Trials
- Enhanced Data Sharing
- Cancer Immunology
- Implementation Science
- Pediatric Cancer
- Precision Prevention and Early Detection
- Tumor Evolution and Progression
Where practical, some recommendations were merged into the final draft. A common theme in many of the recommendations was the sharing of information and the increasing of communication between parties that aren’t currently doing so. Another common theme was the development of promising research resources as well as specific therapies and/or technologies. The recommendations (consult the report for additional details) are:
- Network for Direct Patient Engagement
- Cancer Immnotherapy Clinical Trials Network
- Therapeutic Target Identification to Overcome Drug Resistance
- A National Cancer Data Ecosystem for Sharing and Analysis
- Fusion Oncoproteins in Childhood Cancers
- Symptom Management Research
- Prevention and Early Detection: Implementation of Evidence-Based Approaches
- Retrospective Analysis of Biospecimens from Patients Treated with Standard of Care
- Generation of Human Tumor Atlases
- Development of New Enabling Cancer Technologies
The panel also identified some policy issues that will pose challenges to implementing the recommendations. The issues aren’t part of their report, but they have been forwarded to the Vice President’s task force and other relevant entities. Those policy issues aren’t discussed in detail in the report (you can find some discussion of them in the recommendations), but are:
Coverage and reimbursement
Privacy and consent with regard to patient data
Fragmentation of the delivery of patient care in the community
The need to improve the clinical trials system
Incentives to encourage pediatric drug development
New federal research funding models
Barriers to data sharing
Critical to all of these issues and recommendations is funding for the Cancer Moonshot. But that may not come. As ScienceInsider reports, neither the House nor the Senate appropriations legislation contains anything resembling the $680 million requested by the Obama Administration to support the Moonshot. Depending on how this year’s kabuki theater/budget brinksmanship unfolds, there may be a new President by the time Congress has fully funded the government for the 2017 Fiscal Year (which starts this October 1).
While developed by cancer experts, the recommendations are presented in a way that should be accessible for all audiences, even the lay public that does not have direct or indirect (through family or friends) experience with the disease. I’d encourage other report-generating bodies to copy that style when practical for their own work.
The National Cancer Institute has more material on the report and the panel at its website
, including videos for each of the recommendations.
The next scheduled meeting of the President’s Council of Advisers on Science and Technology (PCAST) will be on September 30 from 8:30 to 12:30 p.m. Eastern in Washington. No official draft agenda has been released, but the Federal Register notice announcing the meeting offers some details. As usual, there will be a webcast and it will be archived shortly after the meeting. Online registration is open for those intending to attend in person.
PCAST also held a conference call this week, specifically to vote on pending reports on forensic science and biodefense. The forensic report has caused a stir, in part because a Wall Street Journal reporter has written an article (possibly behind a paywall, or at least made really hard to read) based on a review of a draft report. The article suggests that the PCAST report will come to conclusions comparable to those reached by a National Academies study back in 2009 that called into question the strength of the underlying research supporting many forensic science techniques. So the news is likely not that this is a new problem, but that it is still a challenge. The federal government has been working on building the research base, and continued concerns prompted PCAST to start its work on the report in late 2015.
But there are other items that PCAST will discuss on September 30th. Besides the forensic science report, the Council will consider reports on biodefense and water science and technology. Also scheduled for the meeting are sessions from experts on data and justice, as well as agriculture preparedness and soil sciences. Once details on exactly who these experts are is made available, I might be able to provide context for why PCAST is hearing from them.
The Presidential Commission for the Study of Bioethical Issues (Commission) next meets on August 31 in Philadelphia. The Commission recently released a draft agenda for the meeting, which will focus on the role of national bioethics advisory panels, both in the U.S. and around the world. (As usual, you can access a webcast of the meeting from the Commission website.)
This topic has been a focus for the Commission of late, and with no additional meetings scheduled (as of this writing), a report on this topic (formal or not) may be the last one from this Commission. Those interested in a peak at what the Commission might release should look at the History section of the Commission website. It’s focused on the U.S., but the Commission has cast a broader net in its study of the topic. Hopefully some of it’s work on advisory bodies outside of the U.S. gets a broader audience before the Commission disbands.
I’ll take time to be more reflective of the Commission’s work after the August meeting (and any subsequent meetings, should there be any). But 26 meetings since 2010 and at least 10 substantial reports reflect a significant output from the Commission members and staff.
Last week the White House released the draft Arctic Research Plan for 2017-2021. It’s available for public comment through August 21. The U.S. Global Change Research Program wants people to sign up online for an account at its website in order to comment. It also appears that signing up for such an account is the only way to read the draft plan.
There are nine research goals for the plan:
- Enhance understanding of health determinants, and support efforts that improve the well-being of Arctic residents;
- Advance process and system understanding of the changing Arctic atmospheric composition and dynamics and resulting changes to surface energy budgets;
- Enhance understanding and improve predictions of the changing sea-ice cover;
- Increase understanding of the structure and function of Arctic marine ecosystems and their role in the climate system, and advance predictive capabilities of regional models;
- Understand and project the mass balance of mountain glaciers and the Greenland Ice Sheet and the consequences for sea level rise;
- Advance understanding of processes controlling permafrost dynamics and the impacts on ecosystems, infrastructure, and climate feedbacks;
- Advance an integrated, landscape-scale understanding of Arctic terrestrial and freshwater ecosystems and the potential for future change;
- Strengthen coastal community resilience and advance stewardship of coastal natural and cultural resources by engaging in research related to the connections among people, and natural and built environments; and,
- Enhance environmental intelligence gathering, interpretation, and application to provide decision support.
If you’re still not sure whether or not to sign up for an account in order to review and comment on the plan, check out the FAQ page. It describes how the draft plan differs from the existing plan, and outlines not only the research goals listed above, but the policy drivers for the plan. Listed below, the drivers are the desired outcomes of the plan, which would be informed by the research goals.
- Enhance the well-being of Arctic residents. Knowledge will inform local, state, and national policies to address a range of goals including health, economic opportunity, and the cultural vibrancy of native and other Arctic residents.
- Advance stewardship of the Arctic environment. Results will provide the necessary knowledge to understand the functioning of the terrestrial and marine environments, and anticipate globally-driven changes as well as the potential response to local actions.
- Strengthen national and regional security. Efforts will include work to improve shorter-term environmental prediction capability and longer-term projections of the future state of the Arctic region to ensure defense and emergency response agencies have skillful forecasts of operational environments, and the tools necessary to operate safely and effectively in the Arctic over the long term.
- Improve understanding of the Arctic as a component of planet Earth. Information will recognize the important role of the Arctic in the global system, such as the ways the changing cryosphere impacts sea-level, the global carbon and radiation budgets, and weather systems.
This plan does appear to include more research on socio-economic impacts related to the Arctic. Once the comments have been submitted, the intention is to submit the plan to the relevant federal agencies in September. This may seem like a rush, but with the Arctic Science Ministerial scheduled for late September in Washington, D.C., I think it makes sense to have some form of the plan in front of the people likely to attend the Ministerial.
The next meeting of the President’s Commission for the Study of Bioethical Issues will take place August 31 in Philadelphia. Building off part of the work in its last meeting, the Commission will continue its discussion of the impacts of bioethical advisory bodies, with an eye toward recommendations for future bodies.
While there is no agenda available as yet, the meeting comes after the Commission concluded a request for comment from the public on this topic. Regrettably, I cannot find the submitted comments online, but I would expect the Commission to discuss them during the August meeting.
As more information becomes available, I’ll post about it. But given my oversight of the May PCAST meeting, I don’t want to let this one slip through the cracks.