The US President's Cancer Panel: A Model For Gathering Country-Level Input to Inform Cancer Control Policy and Program Initiatives

PURPOSE The President's Cancer Panel (Panel) is a federal advisory committee charged with monitoring the US National Cancer Program and reporting directly to the US President. Since its creation a half century ago, the Panel has gathered input from individuals and organizations across the US cancer community and beyond and recommended actions to accelerate progress against cancer. The Panel is unique in its structure and function, and merits examination for its potential applicability in other settings worldwide. METHODS We present an overview of the general President's Cancer Panel model and describe the noteworthy and unique characteristics of the Panel that help achieve its charge. We also detail the specific processes, outputs, and achievements of the Panel appointed by President Barack Obama, which served between 2012 and 2018. RESULTS From 2012 to 2018, the Panel focused on three topics that addressed timely issues in cancer prevention and control: (1) HPV vaccination for cancer prevention, (2) connected health and cancer, and (3) value and affordability of cancer drug treatment. The Panel held 11 meetings with 165 participants who provided diverse perspectives on these issues. Four reports were delivered to the president, which were cited about 270 times in the literature. Over 20 collaborator activities, including commitments of funding, can be linked to the recommendations published in these reports. CONCLUSION The US President's Cancer Panel highlights the importance of independent advisory bodies within a national cancer control program and of national leadership support for the cancer community. The structure and function of the Panel could be applicable in other settings worldwide.


INTRODUCTION
Landmark legislation signed 50 years ago in the United States marked an amplification in how cancers are studied and treated, and how research is translated and applied.2][3][4] Mobilizing support for cancer around the theme of a War on Cancer was an important part of achieving bipartisan support for greatly enhanced funding for cancer.
Among the key pioneering efforts of the Act was the establishment of the President's Cancer Panel (the Panel), a federal advisory committee that monitors the execution of the activities of the National Cancer Program (NCP), a broad, complex collection of governmental and nongovernmental agencies, organizations, activities, and programs that play a role in addressing the US cancer burden (Fig 1). 3,5,6erview of the US President's Cancer Panel The architects of the 1971 National Cancer Act acknowledged the important role that input from individuals outside the federal government could play when setting NCP priorities.The Act established numerous committees to provide such direction.One of these, the President's Cancer Panel, reports directly to the US President.The Act noted that members "by virtue of their training, experience, and background [be] exceptionally qualified to appraise the NCP." 4 The Panel is a federal advisory committee governed by the Federal Advisory Committee Act (FACA) of 1972 [P.L. 92-463], which was established to ensure that bodies advising the federal government provide objective guidance that is accessible to the public. 7perations of the Panel are supported by the National Cancer Institute (NCI), an agency within the National Institutes of Health (NIH), under the cabinetlevel agency, the US Department of Health and Human Services.To our knowledge, the Panel is the only NIH FACA committee that advises the President directly rather than the leadership of various NIH institutes. 8This is consistent with the NCI's special budgetary authority and reporting relationship.
The Panel accomplishes its mission by working with interested parties to identify issues of critical importance to the NCP and national cancer community and by developing reports to the President with high-level program and policy recommendations.The President and White House advisors are the primary audience for the Panel's reports, but the Panel's work is also intended to support federal, state, and nongovernmental organizations in addressing public health priorities highlighted within.Once Panel reports are

CONTEXT Key Objective
What potential role can an independent advisory body play in advancing the objectives of a national cancer control program?
The US President's Cancer Panel, which advises the US President on issues of urgent importance to the national cancer community, is an example of potential relevance to the global cancer landscape.

Knowledge Generated
The US President's Cancer Panel provides a unique model for engaging high-profile members of the cancer community to make timely, actionable, and evidence-based recommendations to national leaders to address the burden of cancer.Knowledge of the Panel's history, processes, activities, and lessons learned can be applied in other settings worldwide to help ensure that cancer prevention and control is a priority of public health planning efforts.

Relevance
The US President's Cancer Panel advisory model may be relevant and applicable in settings worldwide where regional or national cancer control programming is a planned or desired priority.

RESULTS
The National Cancer Act called on the Panel to review the NCP by holding periodic public hearings and submitting an annual report directly to the President. 4Notably, it did not include specific language on how the Panel should conduct operations.This autonomy has enabled Panels over the years to have flexibility about how to focus their annual reviews of the NCP.In this section, we describe how President Obama's Panel conducted its activities, which followed the general Panel model but also introduced unique activities into panel proceedings, such as topic selection criteria (Table 1) and involvement of panel cochairs and collaborators in early phases of recommendation and report development.We also detail the reports this Panel published, provide citations of these reports in the literature as described above in the Methods section, and describe known subsequent actions taken by the cancer community.

Key Process Steps
For each report, the Panel developed a concept for a topic of interest, identified key individuals and held meetings to gather input, conducted additional secondary research, synthesized meeting findings, and drafted recommendations (Table 2).Each Panel report was delivered to the White House and released to the public in print and digital formats.

Meeting Series
From 2012 to 2018, the Obama Panel focused on three topics that addressed important and timely issues in cancer prevention and control: (1) human papillomavirus (HPV) vaccination for cancer prevention, (2) connected health and cancer, and (3) value and affordability of cancer drug treatment (Table 3).Each series included numerous invited organizations and individuals, and all meetings were open to the public and provided opportunity for public comment.
Although the primary focus of each report was the United States, the Panel considered global implications in its reports on HPV vaccination.

Report Audience and Reach
The primary audience for Panel reports is the US President along with relevant White House advisors.Secondary audiences include other stakeholders in the NCP such as federal agencies, professional and voluntary health organizations, and members of the public.Producing print and

Has not recently been examined by other credible organizations
Results in recommendations that are actionable-identified partners have authority to implement them-and are relevant to broad public and private individuals and organizations digital forms of the reports enabled use of multiple channels to disseminate the reports, such as live events, e-mail and social media, and mass media.Digital delivery made the reports much more accessible to a wider audience, searchable, and usable.
Table 4 presents the four reports produced by the Obama Panel and citations of each report found in the literature.One or more of the four reports was cited in the literature 270 times, with the largest number of citations referring to the report on HPV vaccination published in 2014.In total, 261 citations were journal articles, four were books/ electronic books, two were conference proceedings, and two were serials.Articles citing Panel reports were featured in a wide range of public health, cancerspecific, and topic-specific journals (eg, health informatics, women's health, and health communication) and national and organizational progress reports and websites (Data Supplement).

Related Collaborator Actions
As the Panel is an advisory body, it can call on individuals and organizations in the field to implement its recommendations.The Obama panel engaged potential implementers in the entire report process so they would be more likely to act on recommendations, and this was an effective strategy.Partners made commitments they might not have made had they not been involved from the beginning of each Panel report process.
Noteworthy actions that we identified are summarized in  Agendas were developed and participants invited based on their expertise and perspectives and to ensure that key partners were represented Meetings were structured to include brief presentations from attendees, moderated discussions, prioritization of potential recommendations to the President, and public comment All official meetings were open to the public and announced in the Federal Register, 12 on the Panel's website, 6 and on Twitter 13 Following each meeting, one-page summaries, detailed minutes, and verbatim transcripts were produced and made public

Report content development
Key findings from meetings were synthesized Additional primary and secondary research was conducted Report sections were outlined, starting with potential recommendations Collaborators provided feedback on draft report text to ensure that recommendations were actionable.All contributors were listed in the report acknowledgments Various methods were used to obtain White House and administration input.These interactions were aimed at seeking feedback rather than permission

Report release
Report was delivered to White House, receipt confirmed either via e-mail or by meeting with advisors Report was released to the public by multiple channels, including mass media, e-mail distribution lists, and social media

Reach evaluation
Metrics were collected and included media impressions, social media impressions and engagements, web report views, and print copies distributed

Process evaluation
Panel staff conducted an informal evaluation of the meeting series and report development processes to document key lessons learned and enable continuous improvement over time public-private partnership called LAUNCH (Linking and Accelerating User-Centered Networks through Connected Health).
Numerous other actions are aligned closely with Panel recommendations, although they did not explicitly refer to Panel reports.These include NCI funding opportunity announcements to NCI-designated cancer centers to support HPV vaccination and to develop or expand financial navigation services for patients. 36

DISCUSSION
Since its creation a half century ago, the President's Cancer Panel has served as a model for elevating cancer-related issues facing the nation, and recommendations to address them, directly to the US President.The ways in which panels achieved this aim have evolved over time.In this section, we describe noteworthy characteristics of the panel model in recent decades and highlight specific lessons learned from the experiences of the Obama Panel.This exercise may be helpful in examining the potential utility and application of an advisory body like the President's Cancer Panel in other settings globally.
Important features of the Panel as a model include a lean and agile structure, authority, autonomy, convening power, priority-setting ability, and practical relevance to the national cancer community.These characteristics have helped the Panel examine priority topics and provide recommendations to address national cancer challenges in a structured and efficient manner while achieving support and visibility for its reports.
The Panel model offers an efficient structure, comprising a small group of renowned experts and staff.In general, Panel members are appointed to serve for three-year terms with the possibility of reappointments and extension.Two of the three members are distinguished physicians or scientists. 38They are designated as Special Government Employees of the US federal government and must undergo ethics training and complete a financial disclosure before finalizing their appointments. 39,40Members are not compensated full time but rather on the occasions when they are actively participating in Panel-related activities.In 2014, ACIP highlighted key priority areas for future research on HPV vaccination, including reduced-dose schedules, re-evaluation of cervical cancer screening guidelines, and overcoming barriers to increased vaccine coverage. 18 2016, the Cancer Moonshot Blue Ribbon Panel Report highlighted the cancer prevention potential of HPV vaccination. 19 January 2016, 69 NCI-Designated Cancer Centers released statement to urge greater uptake of HPV vaccination for cancer prevention. 20 April 2016, ASCO released statement urging aggressive efforts to increase HPV vaccination to prevent HPV-related cancers. 21 December 2016, ACIP recommended a 2-dose schedule with 9-valent HPV vaccine. 22 July 2016, NCQA updated quality measures for HEDIS 2017, stipulating that HPV vaccination for both males and females will be reported in a single measure along with other adolescent vaccines (meningococcal and Tdap). 23 March 2017, ASCO issued new global guidelines on HPV vaccination, including 2-dose schedule for those age 9-14 years. 24 November 2017, a clinical trial was launched to compare one-dose with two-dose vaccination, and a concurrent epidemiologic survey of HPV status among unvaccinated women was conducted. 25llaborative efforts to promote HPV vaccine uptake in the NCCCP were outlined according to the Panel report.A total of 62% of NCCCP awardees planned or implemented at least one activity since 2013 to address low HPV vaccination coverage. 26V Vaccination for Cancer Prevention: Progress, Opportunities, and a Renewed Call to Action (2018) In August 2019, data released by CDC showed that 71.5% of adolescents age 13-17 years sampled had received ≥ 1 dose of HPV vaccine, and 54.2% had completed the HPV vaccination series and were considered HPV up-to-date.In comparison, in 2012, only 53.8% of females and 20.8% of males age 13-17 years had received ≥ 1 dose of HPV vaccine. 27 August 2019, NCI released a notice of an R01 mechanism funding opportunity titled Linking the Provider Recommendation to Adolescent HPV Vaccine Uptake. 28 2020, the Food and Drug Administration approved Gardasil 9 for the prevention of certain HPV-related head and neck cancers. 29nnected health and cancer Improving Cancer-Related Outcomes with Connected Health ( 2018) In 2016, the 21st Century Cures Act was passed by Congress to drive the electronic access, exchange, and use of health information, which contains a stipulation against data blocking and encourages usability for Health IT. 30 In 2017, FCC and NCI formalized the public-private partnership LAUNCH, which focused on how broadband connectivity can be leveraged to improve symptom management for rural patients with cancer. 31 March 2020, the Final Rule of the 21st Century Cures Act was released, which implemented provisions from the 21st Century Cures Act.Released by ONC, it specifically promotes interoperability and patient access to their electronic medical records and also addresses information blocking practices. 30,32omoting Value, Affordability, and Innovation in Cancer Drug Treatment Promoting Value, Affordability, and Innovation in Cancer Drug Treatment (2018) In 2018, an SBIR announcement led to the funding of two contracts to support the development of IT-based platforms aimed at reducing financial hardships for patients with cancer by streamlining the calculation of patients' out-of-pocket costs for cancer treatment. 33 May 2018, DHHS issued a report on potential actions that the agency could take to reduce the burden of prescription drug costs on patients. 34 2019, the Healthcare Delivery Research Program of the NCI DCCPS, with support from the Office of Cancer Centers, conducted a survey to better understand the scope of financial navigation services available to patients treated at NCI-Designated Cancer Centers. 35 2020, NCI's DCCPS announced 11 supplements to cancer centers to develop or expand financial navigation services for patients. 36om 2018 to 2020, 148 bills were enacted by states on various issues related to reducing drug prices, including price transparency, coupons/costsharing, and affordability analyses.The Panel is supported by NCI staff members who are federal employees or contractors.
Collaborators are engaged to extend the capabilities and subject matter expertise of the Panel.These individuals aid the Panel in a consultative manner; government allowances are provided for costs of travel to meetings.As such, they are not permanently on staff, which supports innovation and agility and flexibility in operations.Examples of active partner involvement in Panel activities include suggesting meeting participants, participation in Panel meetings, contribution to consensus-building and priority-setting activities, and involvement in report drafting via directed feedback.
Being associated with the President of the United States gives the Panel's recommendations high visibility, authority, and wide recognition, potentially lending credibility to the Panel's recommendations.The Panel also has the authority to convene meetings that are considered official proceedings of the US government.Meetings are listed in the Federal Register, and proceedings become part of the official federal record.
The Panel also enjoys a certain level of autonomy in its ability to achieve its mission.This priority-setting ability supports the development of recommendations that are focused, specific, and-ultimately-actionable.
Although the primary audience of its reports is the President, the Panel maximizes the utility of its work by reaching a broader audience, including US government executive branch agencies, professional organizations, policymakers, states, patients, advocates, and the general public.These audiences are taken into consideration when developing final reports, and the Panel has in recent decades engaged the media and interested parties to promote each report's release.The Panel also has an open participation policy; the public is invited to provide testimony for the official record.Patients and their advocates are included for participation in Panel meetings.
Although the unique operating model of the President's Cancer Panel in recent decades supports the execution of its mission, it is associated with some challenges.These include issues related to the role of the Panel as an advisory but not an implementation body, the broad scope of its mission, and its susceptibility to a varied US political landscape.The Obama Panel took steps-some of which are detailed below-to minimize the impact of these challenges on its work.
The Panel does not have the authority to implement its recommendations.However, the Obama Panel made concerted efforts to engage partners that had implementation authority and worked closely with these groups.For its 2012-2013 report on accelerating HPV vaccine uptake, the Panel engaged the CDC and American Cancer Society early in the series-planning activities for direction.It also engaged immunization partners, which were generally not associated with cancer prevention and control activities at the time.Bringing together diverse partners who were not previously at the same table ensured that the recommendations were appropriate and actionable.
The charge of the Panel, as defined in the National Cancer Act, is to monitor the NCP, a considerable charge given the size and scope of the program, particularly for a small advisory committee.Indeed, past Panels have called for an evaluation of the NCP to clarify its mission and vision, enhance coordination, and identify accountable parties. 3er many years, the Panel has generally approached this challenge by selecting one area of focus per series or report.The Obama Panel took extra steps to define and apply a set of criteria to potential topics.Focusing areas of study is nonetheless challenging.For example, the Obama Panel set out to examine the changing landscape in cancer communications in 2014-2015, but it was difficult to narrow this subject to a meaningful and manageable topic.The Panel went on to develop a series and report on connected health and cancer. 16The time spent working to understand this topic area and the needs of communities resulted in alignment on other high-profile efforts in 2016, including the Cancer Moonshot Taskforce 41 and the 21st Century Cures Act. 42,32less the Panel is directly credited and cited, it is difficult to directly attribute actions to the Panel's recommendations.Also, although not unique to the Panel as a FACA committee, the Panel has lacked a formal tracking and evaluation system for its work, output, and impact.For the purposes of this report, a citation search of literature using recognized search engines was undertaken.This search found that the Obama Panel reports have been cited by others who are publishing work in the areas that the Panel studied.Panel reports served several key objectives in these articles, including providing calls to action and recommendations that align with those of authors.Panel reports, extensively referenced themselves, also helped expand the evidence base provided in these articles.These citation search results indicate a wide breadth and utility of Panel reports as support for authors' published work.However, while informative, these results cannot be characterized as a formal tracking of the impact of the Panel's work.
A formal tracking strategy and support for this activity would help to better evaluate the impact of the Panel's activities and recommendations on cancer research, care, and policy initiatives.Partly with this challenge in mind, in 2018, the Obama Panel revisited HPV vaccination 5 years after the publication of its initial report.In a report from the Panel chair, the HPV landscape was re-examined to understand where needs remained and to issue an updated call to action to increase HPV vaccination rates globally. 14This report was not a formal evaluation, but it provided a unique opportunity to assess the progress made and re-energize efforts in areas where work was still needed.
Although designed to have three members serving overlapping 3-year terms to maximize continuity, the Panel is vulnerable to disruption in operations.When one administration leaves and a new one comes in, Panel members may potentially step down and leave a gap until new members are appointed.The process involved with onboarding a new Panel member may also cause disruptions to Panel operations because many of the decisions made by the three-member Panel require a quorum.Fortunately, Panel members may serve until replaced if they are willing and able, which has helped minimize gaps in operations.
4][45] The National Cancer Advisory Board was established by the National Cancer Act of 1971, like the Panel. 43The National Cancer Advisory Board contains a mix of presidential appointees and nonvoting ex officio members.Its charge is to advise the NCI director on NCP activities, including research priorities, training, and grants.The National Cancer Policy Forum, part of the National Academies of Science, Engineering, and Medicine, examines issues of interest to the broad national and international cancer communities. 44Like the Panel, the National Cancer Policy Forum convenes workshops and produces reports that identify critical actions that can be taken to reduce the burden of cancer.
Several global examples of groups acting in an advisory capacity on cancer also exist.One of the recognizable characteristics of the US President's Cancer Panel is its intrinsic link to the President of the United States.In France, a similar history of political leaders championing national cancer control efforts can also be tracked, beginning with President Jacques Chirac's signing of the Charter of Paris 2000 to the 2021-2030 cancer control strategy unveiled by President Emmanuel Macron that is implemented by the French National Cancer Institute. 46,47n Taiwan, the Cancer Control Act of 2003 led to the establishment of the Cancer Prevention and Control Policy Commission, which formulates cancer prevention and control policy, evaluates the cancer control budget, and reviews matters such as guidelines for diagnosis and treatment. 48he All-Party Parliamentary Group on Cancer (APPGC) in the United Kingdom also has a similar priority-setting charge as the Panel.The APPGC was founded in 1998 to keep cancer at the top of the political agenda, and to ensure that policymaking remains patient centered. 49APPGC officers meet regularly throughout the year, make decisions on activity and policy direction for the group, and serve as champions for cancer care in Parliament.As part of these regular meetings, APPGC also discusses priorities and hears from expert speakers on topics of interest.
In conclusion, the US President's Cancer Panel, in operation for 50 years, issues recommendations on high-priority topics to monitor the execution of the National Cancer Program.Features of the Panel have helped maximize these efforts, including the Panel's structure, authority, priority-setting ability, and reach.The Panel highlights the importance of independent advisory bodies within a national cancer control program and of national leadership support for the cancer community.The unique structure and function of the President's Cancer Panel could be applicable in other settings worldwide.

I n d i v i d u a l s
Pol icy , p ro g r a m s , s e r v i c e s , r e g u l a t i o n , e d u c a ti o n P o li c y , s e r v i c e s , p r o d u c t s , e m p lo y m e n t, ed uc ation e r s it y a n d a c a d e m ic h e a lt h c e n te r s Other indus try S o ci al re sp o n si b ili ty

37 Abbreviations:
Abbreviations: ACIP, Advisory Committee on Immunization Practices; ACS, American Cancer Society; ASCO, American Society of Clinical Oncology; CDC, Centers for Disease Control and Prevention; DCCPS, Division of Cancer Control and Population Sciences; DHHS, US Department of Health and Human Services; FCC, Federal Communications Commission; HEDIS, Healthcare Effectiveness Data and Information Set; HPV, human papillomavirus; NCCCP, National Comprehensive Cancer Control Program; NCI, National Cancer Institute; NCQA, National Committee for Quality Assurance; ONC, Office of the National Coordinator; SBIR, Small Business Innovation Research.

AFFILIATIONS 1 Former
Employee of US National Cancer Institute (2011-2018), Rockville, MD 2 US National Cancer Institute, Rockville, MD 3 UNC Gillings School of Global Public Health, Chapel Hill, NC CORRESPONDING AUTHOR Rachel Hanisch, PhD, MPH, Division of Cancer Control and Population Sciences, Epidemiology and Genomics Research Program, Genomic Epidemiology Branch, US National Cancer Institute, 9609 Medical Center Drive, Rockville, MD 20850; e-mail: Rachel.hanisch@nih.gov.

TABLE 1 .
Topic Selection Criteria as Defined by Obama Panel

Table 5 .
Some activities can be attributed directly to Panel recommendations.These include seeding collaborations, such as the National HPV Vaccination Roundtable, hosted by the American Cancer Society and funded in part by the Centers for Disease Control and Prevention (CDC), and the formation of the NCI and Federal Communications Commission's

TABLE 2 .
President's Cancer Panel Meeting Series and Reports: Key Process Steps, 2012-2018 Initiation of Appointment TermsChair Rimer and Member Witte (Member Harper was appointed slightly later) met with representatives of NCI divisions to solicit suggestions regarding priorities Meetings were held with leaders of key national cancer organizations such as the American Cancer Society, American Association for Cancer Research, and American Society of Clinical Oncology to understand their priorities Criteria were developed for selection of topics vetted with NCI leaders and others (

Table 1 )
Series concept developmentEnvironmental scan was conducted to identify relevant organizations, individuals, initiatives, reports, legislation, and policies for topics of interest Literature review was conducted to capture relevant research findings Informal community interviews provided further insight Potential series subtopics, participants, and recommendations were identified Selection criteria were applied to topics under consideration Concept paper was drafted Meeting series was outlined to identify potential participants and topics Series cochair was recruited to advise on topic, series planning, and report development Presentations were made to the National Cancer Advisory Board for feedback at various stages of report development

TABLE 4 .
President's Cancer Panel Reports and Related Indicators of Reach, 2012-2018 Abbreviation: HPV, human papillomavirus.a Includes citations from the time of each respective report release to January 24, 2022.b No meetings were associated with this report.

TABLE 5 .
Examples of Actions Related to President's Cancer Panel Reports Published 2014-2018 HPV vaccination for cancer prevention Accelerating HPV Vaccine Uptake: Urgency for Action to Prevent Cancer (2014) In 2014, the National HPV Vaccination Roundtable was established by ACS and CDC.