Office of the Director


National Cancer Institute
 

Advocates 

inResearch 

WORKING GROUP 

Recommendations
 

U.S. DEPARTMENT 

OF HEALTH AND 

HUMAN SERVICES 

National Institutes 

of Health 
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Photo Captions 

Advocates and researchers at NCI interact in varied ways, including participation in advisory board 

meetings, special conferences, and educational tours. In these photos (clockwise from top center): 

Donald Johnsey, Program Manager, Phase I/II Chemoprevention Consortia Program, NCI Division 

of Cancer Prevention 

NCI Director’s Consumer Liaison Group members Wendy Selig, President and Chief Executive 

Officer, Melanoma Research Alliance, and Max Wallace, Chief Executive Officer, Accelerate 

Brain Cancer Cure 

Maria Merino, Principal Investigator, Laboratory of Pathology, NCI Center for Cancer Research 

Lee Helman, Scientific Director for Clinical Science, NCI Center for Cancer Research, with congressional staff member Dipti Chhajwani 

J. Carl Oberholtzer, Chief, Laboratory of Pathology, NCI Center for Cancer Research 

Barbara Duffy Stewart, Association of American Cancer Institutes, and Mark Pascu, Leukemia 

and Lymphoma Society 

The findings and conclusions in this report are those of the Advocates in Research 

Working Group and do not necessarily represent the official position of the National 

Institutes of Health or the U.S. Department of Health and Human Services. 
Foreword
 

The cancer research enterprise is vast and complex, with many individuals and 

organizations involved in myriad ways. Patients, and the advocates who represent 

them, are among the largest group of stakeholders in cancer research. For many 

who become advocates, a personal experience with cancer triggers a strong desire to 

become intimately involved in the research process as a way to give back and make a 

difference. Through research advocacy, advocates partner with researchers to bring a 

distinct, diverse, and critical perspective to the scientific process. 

Highly effective engagements between researchers and advocates currently result from 

the commitment of individuals who understand the potential value that an informed 

advocate can bring to the research process. These individuals are willing to invest the 

time and energy necessary to actualize that vision—they are the innovators paving the 

way. But, in the absence of evidence or a system that defines, informs, and supports 

those who want to contribute, these individuals will continue to be the outliers rather 

than the standard. 

We believe that the efforts of the Advocates in Research Working Group (ARWG) 

and the resulting recommendations will help advance research advocacy and build 

consensus and shared meaning around its practice. We anticipate that rigorous evaluation and documentation of research advocacy will lead to a better understanding of 

its benefits, ultimately enabling advocate involvement to become a standard practice 

in cancer research. The ARWG’s report is intended to help guide the National Cancer 

Institute (NCI) as it seeks to strengthen the process for engaging advocates in research 

in an effective, transparent way. 

Finally, although the ARWG’s recommendations are tailored to the distinct needs of 

NCI, it is our hope—and one shared by NCI and the full ARWG membership—that this 

work can serve as a foundation for successful advocate engagement throughout the 

cancer research enterprise, acting as a blueprint for organizations across the nation. 

Shannon Bell, M.S.W. 

Director, Office of Advocacy Relations 

National Cancer Institute 

Kelly Cotter, J.D. 

Chair 

Advocates in Research Working Group 

Foreword i 
ADVOCATES IN RESEARCH WORKING GROUP 

Recommendations
 

Since the late 1990s, the National Cancer Institute (NCI) has facilitated the engagement of individual advocates in its research. In 

1993, the National Cancer Advisory Board (NCAB) conducted 

a survey of advocacy groups and found they had a strong interest 

in fostering relationships with NCI to increase communication and 

collaboration. In 1996, NCI created the Office of Liaison Activities, 

now the Office of Advocacy Relations (OAR), to develop and cultivate these relationships. In 1997, the Institute broke new ground 

by launching the NCI Director’s Consumer Liaison Group (DCLG), 

a federal advisory board consisting solely of consumer advocates. 

In September 2007, NCI Director Dr. John E. Niederhuber asked 

the DCLG to consider how to most effectively and consistently 

engage individual advocates in the research process to accelerate 

progress and benefit patients. As a result of this request, the DCLG 

established the Advocates in Research Working Group (ARWG). The 

ARWG was active throughout 2008 and 2009, approving its final 

recommendations in summer 2010. The ARWG comprised an array 

of stakeholders in the cancer research process, including research 

advocates, a broad range of NCI staff, and extramural researchers. 

The ARWG considered the engagement of advocates throughout NCI 

and the NCI-funded research community, such as NCI-designated 

Cancer Centers, Specialized Programs of Research Excellence 

(SPOREs), and NCI Clinical Trial Cooperative Groups. However, 

because implementation must occur within a particular environment, the ARWG focused specifically on NCI when discussing the 

implementation of its recommendations, which are based on the 

culture, practice, and structure of NCI and are intended to meet the 

specific needs of the Institute. Although some of the recommendations are limited in scope to NCI, the ARWG hopes its report will 

be applicable across multiple research environments, thus serving 

as a guide for developing promising approaches that the broader 

research community can use to engage research advocates. 

Recommendations 1 
2 Advocates in Research Working Group

Early on the term research advocate was defined and provided 

context for the work of the ARWG:

n A research advocate brings a nonscientific viewpoint to the 

research process and communicates a collective patient perspective.

n A collective patient perspective is created when a person has 

knowledge of multiple disease experiences and conveys this collective perspective rather than his or her own exclusive experience.

The ARWG analyzed information about current advocate engagement practices and identified four primary ways advocates engage 

in the research process. These roles included advising, designing, 

reviewing, and disseminating. The group defined the scope of each 

role and identified examples to clarify each one further:

1. Advocates engaged in advisory roles help develop recommendations or advise on strategic directions or broad policy issues. 

Advisory activities include participation on a formal advisory 

board or providing a critical perspective as part of a panel discussion at a scientific meeting.

2. Advocates engaged in design roles develop new or enhance 

existing programs or activities. Design activities include serving 

on a committee or panel involved in development of a new program or oversight of an existing program to provide the patient 

perspective or to identify patient barriers to implementation.

3. Advocates engaged in review roles evaluate and analyze research 

proposals and ongoing research activities. Review activities include 

participating in peer or concept review panels.

4. Advocates engaged in dissemination roles interpret and communicate scientific information for nonscientific audiences. 

Dissemination activities include using scientific content to develop, 

edit, and/or distribute research findings to such audiences.

The ARWG identified outcomes associated with engaging advocates 

in research. These outcomes fit into two broad areas: enhanced 

research and increased public understanding and support of research.

1. Enhancing research

a. Advocate involvement improves clinical research feasibility by providing experiential knowledge of protocols’ impacts on patients.

b. Advocate involvement provides a perspective that can stimulate 

innovation and expand the scope of inquiry.

c. Advocate involvement serves as an immediate reminder of the 

need for research focused on patient benefit and outcomes.

2. Increasing public understanding and support of research

a. Advocate involvement increases public trust through enhanced 

transparency and accountability.
Recommendations 3

b. Advocate involvement helps break down barriers between the 

public and researchers.

c. Advocate involvement establishes a conduit for regular communication between the public and researchers.

d. Advocate involvement assists in disseminating research findings in clear and understandable ways.

e. Advocate involvement helps other advocates understand and 

effectively communicate about science and research institutions.

Recognizing the need for a systematic yet adaptable, centralized, and transparent process for advocate engagement, the 

ARWG identified seven broad themes around which its specific recommendations were developed. The ARWG understood that 

the needs and interests of investigators across NCI and the broader 

research enterprise may vary significantly. Therefore, the recommendations are intended to provide support, clarity, and guidance 

but not necessarily to restrict or limit current effective practices.

1. Recruit: Proactively recruit experienced and diverse research 

advocates and encourage NCI investigators and staff* to engage 

advocates.

2. Assess: Develop a robust application process that generates a 

cadre of highly qualified research advocates who can meet the 

scientific needs of NCI.

3. Match: Develop a matching process that identifies program needs 

and effectively engages the right advocate in the right activity at 

the right time.

4. Train: Provide training, coaching, and informational resources 

to advocates and NCI staff to ensure all participants have the 

knowledge and tools they need to be effective.

5. Facilitate: Leverage NCI’s centralized resources and expertise to 

better inform and support the advocate engagement process.

6. Monitor: Track and evaluate the advocate engagement process 

to implement continuous improvements and develop an evidence 

base around engaging advocates in research.

7. Promote: Develop a process to retain and recognize advocates 

and staff who successfully work together and communicate these 

successes across the community.

Each of the recommendations presented in the report addresses a 

critical component in the comprehensive process of successfully 

involving advocates in research. The ARWG developed a rationale 

that serves as the foundation for each recommendation. The process for implementation represents a balance between a vision of 

seamless integration of advocates into NCI’s work and the realities 

and constraints of the current structural, functional, economic, and 

* The term NCI staff will be used 

throughout this document to refer 

to the collective group of professionals employed by NCI, including 

investigators, program staff, and 

administrators.
political environments. The ARWG recommends engaging advocates 

in advisory and design roles as NCI implements these recommendations. Doing so will create a process that not only meets the needs 

of NCI but also is transparent and feasible for external stakeholders. 

Recommendation 1 

Recruit 

Proactively Recruit 

Experienced and 

Diverse Research 

Advocates and 

Encourage NCI 

Investigators and 

Staff to Engage 

Advocates 

Due to natural attrition and the continually evolving scientific and 

programmatic needs of NCI, recruitment of research advocates should 

occur on an ongoing basis. Recruiting a diverse group of advocates 

who have experience with the research system is critical to maximizing the benefits that advocates bring to the research process. 

Engaging qualified advocates in a wide array of activities allows 

NCI to take full advantage of the experiential perspective advocates 

inherently bring as well as benefit from their diverse experiences 

and backgrounds. 

In 2001 and 2004, NCI sought out community advocates to participate in the peer-review process. Upon selection, these advocates 

became part of the NCI Consumer Advocates in Research and 

Related Activities (CARRA) program. Since that time, there has 

been no subsequent formal opportunity for advocates to apply to 

participate in NCI activities. Advocates lost through natural attrition 

have not been replaced, nor have advocates with specific skill sets 

that align with NCI’s scientific needs been purposefully included. 

Accordingly, NCI commonly reaches out beyond the current pool 

of advocates to identify individuals who meet the specific and 

continually evolving scientific needs of the Institute. 

As a whole, the current cadre of CARRA advocates does not adequately reflect the diversity of the United States or the populations 

affected by cancer—nor does it does collectively portray the broad 

range of viewpoints and experiences that exist within the patient 

perspective. At times, NCI staff identify the need to engage individuals from a particular culture or background. Given the lack of 

demographic diversity within the current CARRA membership, the 

same individuals are repeatedly tapped to fill these specific needs. 

Thus, a limited number of individuals repeatedly represent a large 

group perspective, limiting the wealth of within-group perspectives. Additionally, this situation may limit when and how these 

advocates are engaged, consigning them to the more traditional 

role of representing a particular subgroup of patients. Establishing 

an ongoing recruitment process will allow NCI to engage a larger 

number of diverse and experienced advocates. 

Outreach into the various Divisions, Offices, and Centers across 

NCI will help Institute staff learn about the benefits of and process 

for engaging advocates in their work. NCI staff should be encouraged to use OAR expertise and resources as they engage advocates. 

Whenever reasonable, advocates should be asked to complete the NCI 

application process (see Recommendation 2), which will allow them 

4 Advocates in Research Working Group 
to engage more fully with NCI and take advantage of the training 

and facilitation provided by OAR. Doing so also will allow OAR to 

monitor the engagement of research advocates across NCI and apply 

best practices, identify training and information needs, implement 

process improvements, and begin to develop a comprehensive and 

accurate evidence base related to engaging advocates in research. 

Recruit Experienced Research Advocates 

NCI should pursue opportunities to collaborate with other organizations that involve advocates in their work. This could include 

traditional advocacy organizations; professional societies; foundations; other federal agencies; and NCI-funded organizations, such 

as Cancer Centers and NCI Clinical Trials Cooperative Groups. 

Partnering with these organizations should allow for new connections between NCI and advocates engaged in the research process 

within other venues. Additionally, NCI should create opportunities 

to network with research advocates by having a presence at scientific and advocacy meetings. Finally, social media tools, such as 

Facebook and Twitter, can provide opportunities to reach additional 

experienced research advocates. 

Develop Strategies to Recruit Diverse 

Advocates to Engage with NCI 

NCI research advocates should reflect the broad array of Americans 

affected by cancer and meet the needs of NCI’s specific research 

interests. The ARWG recommends defining desired dimensions of 

diversity, setting specific recruitment goals, and designing recruitment strategies to meet these goals. 

NCI should identify recruitment strategies that target underrepresented groups and individuals. These may include identifying 

community liaisons and key places of information dissemination 

and developing targeted recruitment messages. NCI should use its 

existing resources, such as the Center to Reduce Cancer Health 

Disparities and the Office of Communications and Education; 

community resources, such as the Intercultural Cancer Council; 

and the expertise of community leaders. Recruiting individuals 

affected by cancer who have not had training or experience as 

research advocates may enhance NCI’s ability to diversify its cadre 

of advocates. However, this tactic cannot be undertaken until NCI 

has identified and/or developed the tools and resources necessary 

to train unprepared advocates to engage in the research process. 

Although not traditional dimensions of diversity, professional experience and specific scientific areas of interest are unique attributes 

that differentiate advocates and the skills and perspectives they can 

offer. As NCI opportunities for engagement expand and increase, 

the Institute will need advocates with diverse knowledge and skill 

sets to appropriately pair advocates with specific activities. 

Recommendations 5 
Encourage NCI Staff to Engage Advocates 

Interest in and understanding of when, where, and how to involve 

advocates in the research process vary dramatically across NCI. 

Although a portion of NCI staff understands not only the benefit of engaging advocates but also how to do so effectively, this 

understanding is not consistent throughout the Institute. Many 

staff members have an interest in engaging advocates but may not 

understand exactly when doing so would add benefit or how to do 

so effectively. Educating NCI staff in key leadership and communication positions about the benefits of engaging research advocates 

and the value of doing so through a centralized resource, such as 

OAR, is essential. 

To implement this guidance and monitor outcomes, NCI staff must 

engage advocates effectively and communicate with OAR about these 

engagements. Doing so will allow OAR to identify and promote 

promising approaches as well as track and evaluate these activities. 

Such a culture of inclusion and collaboration is necessary for success and should be facilitated through the development of a robust 

outreach program (see Recommendation 7). 

The ARWG discussed the merits of mandating advocate involvement 

in NCI research activities but determined that such a requirement 

is neither pragmatic nor beneficial, given its inconsistency with 

the independent research culture of NCI. The ARWG believes that 

creating an effective and supportive process for engaging advocates, 

combined with appropriate outreach activities, will encourage NCI 

investigators and staff to engage advocates in their research efforts 

through OAR. 

Recommendation 2 

Assess 

Develop a Robust 

Application Process 

that Generates a Cadre 

of Highly Qualified 

Research Advocates 

who Can Meet the 

Scientific Needs of NCI 

No current application process exists for advocates at NCI. When 

advocates express interest in working with NCI, there is no systematic method for evaluating their level of preparedness or informing 

NCI of their availability. When a need cannot be met through the 

current CARRA membership, OAR staff work with established 

advocacy organizations to identify an advocate and assess him or 

her through an ad hoc review of prior advocacy experience. This 

process takes time, and results vary. 

Proactively identifying the knowledge, skills, and characteristics 

that enable research advocates to contribute to the research process 

and building a system that assesses potential research advocates 

against these benchmarks will lead to more consistent and successful collaborations between research advocates and the research 

community. Additionally, assessing specific skills in an ongoing 

and standardized manner will allow NCI to regularly identify new 

and diverse advocates and training needs. 

6 Advocates in Research Working Group 
Identify the Knowledge, Skills, and Characteristics 

that Enable Advocates to Contribute 

Like the journey from patient to survivor, the evolution from cancer 

survivor to advocate to research advocate is layered and complex. 

Basic advocacy eligibility criteria include proficiency in the English 

language, basic use of and access to technology, firsthand knowledge of the patient perspective through a personal or specialized 

experience, and the ability to represent a collective patient perspective developed through an enduring experience with a variety of 

cancer patients and advocacy organizations. 

However, the baseline criterion for engaging as a research advocate 

in the scientific process is much more stringent. To be regarded as 

highly qualified or fully prepared to engage in the research process, an advocate must demonstrate a basic understanding of the 

cancer disease process, the research process, and familiarity with 

how the scientific community works and communicates. In addition to having these knowledge bases, a research advocate must 

have the ability to effectively engage in the research process, work 

as a nonscientific member of a scientific team, and communicate 

effectively with researchers. 

Develop a Process to Assess Advocate Readiness 

NCI should use the knowledge and skills identified as critical to 

an advocate’s success to develop eligibility criteria and an online 

application process that effectively assesses advocate readiness. 

The assessment should be valid and reliable, but not overly burdensome to applicants. The entire process should be constructed and 

implemented with as much transparency as possible. The application process should enable NCI to review an advocate’s resume, 

answers to standard questions, and responses to hypothetical scenarios to evaluate relevant experience; references; interpersonal 

and communication skills; teamwork and problem-solving abilities; 

and understanding of the disease process, research process, and 

cancer community. To create a successful application process that 

will support the selection and training of a robust cadre of research 

advocates, NCI should engage human resource professionals to identify the specific knowledge, skills, and characteristics an individual 

must possess to contribute successfully to the research process. 

The ARWG was fully aware that access to technology as a basic 

eligibility criterion and an online application process may limit 

some individuals’ access and opportunity to engage with NCI. This 

issue was discussed at length as it conflicts with the ARWG’s goal 

to expand and diversify the number and types of individuals who 

engage in the research process. However, because a vast majority 

of the research process and communication about that process is 

conducted with the use of technology, it was determined to be an 

unavoidable requirement for engagement. As such, the need to 

augment individuals’ access to, understanding of, and use of basic 

technology such as email should be considered and integrated into 

Recommendations 7 
8 Advocates in Research Working Group 

 

whatever strategies are identified to recruit diverse advocates into 

the research process. 

Communication is pivotal to the success of the entire engagement 

process, and there are several points at which communication is 

paramount, including during the assessment process. When an 

applicant is accepted, he or she should receive a timely notification 

of acceptance, a basic “introduction to NCI” package of materials, 

and an invitation to participate in an orientation teleconference. 

This teleconference should orient the advocate to the NCI mission 

and organizational structure, how research advocates are engaged 

in the research process at NCI, and specifically how advocates are 

matched with and selected for individual NCI activities and research 

activities occurring in organizations outside NCI, such as Clinical 

Trial Cooperative Groups, cancer centers, and academic institutions. 

Communication with individuals who are not fully prepared to 

engage in NCI research activities is important and should include 

what experiences and/or skills were missing as well as ideas for how 

that individual may be able to enhance his or her qualifications as a 

research advocate. NCI should consider preparing current NCI advocates with extensive experience to participate in this conversation. 

To ensure that this cadre of NCI advocates can meet the scientific 

needs of the Institute, a process should be developed to remove 

individuals from the advocate pool if they no longer seem suitable. 

Final criteria should be determined by a work group of internal 

and external stakeholders. Potential indicators that an individual 

is no longer suitable are likely to include an extended period of 

non-engagement or negative feedback (of an egregious nature or 

from multiple sources). 

Recommendation 3 

Match 

Develop a Matching 

Process that Identifies 

Program Needs and 

Effectively Engages 

the Right Advocate 

in the Right Activity 

at the Right Time 

The current process for matching an advocate with an NCI activity 

includes evaluating the activity’s logistical requirements and the 

advocate’s demographic information, prior experience, and selfreported areas of interest. Currently, the most rigorous selection 

criterion is an advocate’s self-reported knowledge or experience in 

a particular topic area (e.g., biospecimens), disease site (e.g., pancreatic or colon cancer), or population (e.g., children or older adults). 

Though many advocates and NCI staff have found success with the 

current system, it is based on limited and self-reported criteria that 

may be insufficient to support a good match between the activity 

and the research advocate. To maximize the value of engaging 

advocates in research and to aid in the retention of both advocates 

and NCI staff, a more rigorous approach should be undertaken. 

Develop a Process that Identifies the Critical 

Requirements for a Specific NCI Activity 

To effectively define the requirements of an NCI activity, OAR 

should develop a process or set of questions that can support NCI 

staff in determining the role they would like an advocate to play 

and the knowledge or skill sets the advocate needs to effectively 

contribute to the activity. NCI should continue to consider logistical 
details, such as when the activity takes place, whether the advocate 

will need to participate by phone or in person, and expected time 

commitment for participation. NCI staff also should consider how 

to facilitate the advocate’s participation, which can include such 

topics as advocate orientation, training or mentoring, travel costs, 

and honoraria. 

Develop a Process that Identifies the Right 

Research Advocate for Each NCI Activity 

The ARWG anticipates that the robust assessment process previously 

outlined will result in a diverse cadre of highly qualified research 

advocates. Information about these advocates will be housed in a 

searchable database that OAR staff can use to match the right advocate to the right activity, based on the information provided by the 

requesting office. OAR currently maintains a database of advocates 

through the CARRA program. This database should be evaluated 

for its ability to support the newly identified requirements and 

process of advocate engagement and be modified accordingly. The 

matching process should take into account the requirements of the 

identified activity, the prior experiences of the research advocate, 

and any additional professional skills he or she possesses. 

At times, it may be necessary to reach beyond the cadre of NCI 

advocates to fill unique or highly technical activity requirements. 

When necessary, OAR staff will consult with the broader cancer 

community to identify appropriate participants. This consultation 

should be done in conjunction with NCI advocates who are well 

respected and have significant connections to the cancer community 

and advocacy organizations. 

During the matching process, two critical communication steps will 

be notification each time an advocate is being considered for an activity and notification each time an advocate is not selected. In some 

cases, communication between NCI staff and the advocates under 

consideration will be part of the matching process. The requirements of each activity should be clearly and fully communicated to 

all potential participants so that they can determine whether they 

are prepared and able to participate effectively. 

Access to relevant training and information supports research 

advocates in developing and maintaining the knowledge and skills 

necessary to effectively contribute to the research process. To 

provide an informed opinion on how scientific discovery affects 

the patient community, advocates must have access to up-to-date 

information and training, which should include an understanding 

of cutting-edge science. 

Research advocates have different information needs at different 

times in their work as advocates. These needs include baseline 

information prior to participation in an activity, activity-specific 

information, and continuously updated information related to the 

continually evolving cancer research process. 

Recommendation 4 

Train 

Provide Training, 

Coaching, and 

Informational Resources 

to Advocates and NCI 

Staff to Ensure all 

Participants Have the 

Knowledge and Tools 

They Need to Be Effective 

Recommendations 9 
Many organizations have developed trainings and resources for 

advocates. These resources come from a wide range of sources, 

including government agencies, professional societies, advocacy 

organizations, and pharmaceutical companies. This information 

also comes in a wide variety of formats, including formal in-person 

training, online training modules, tutorials, magazines, fact sheets, 

reports, websites, journals, and peer mentoring. 

Barriers to accessing and evaluating resources are just as prevalent 

and varied as the resources themselves. Journal articles are generally unavailable to the public until 12 months after publication. 

Trainings are often in person and inaccessible to individuals in 

large numbers. Many resources are developed on an ad hoc basis 

with little quality control, and mentoring relationships lack a formal 

process and predetermined outcomes. Finally, resources are spread 

throughout a large, highly complex community and, even when 

available, can be difficult to locate. 

Having the appropriate training and resources available is essential 

to the successful participation of research advocates in the research 

process. Development of these resources will support effective 

engagements, increase advocates’ desire to remain engaged with 

NCI, and encourage NCI staff to further engage advocates. 

Develop and Maintain an Online Repository 

of Trainings and Resources 

A public, online repository of training resources will provide advocates with easy access to the materials they need to prepare for and 

effectively engage in the research process. NCI, in conjunction with 

key stakeholders, should develop a process to identify and solicit 

trainings and resources currently in the community, then organize 

those resources into a searchable database that will be publicly 

available online. This process should include a scan of the cancer 

advocacy environment to identify existing resources that meet the 

needs of research advocates. The repository must be maintained to 

ensure the content remains relevant to the work of NCI and meets 

the needs of advocates. A work group that includes internal and 

external members—advocates as well as scientific experts—should 

develop criteria for what resources should be included, such as a 

resource’s ability to provide current, accurate, and evidence-based 

information free from commercial bias. The work group also 

should determine a process for adding new content and eliminating unneeded or outdated content on an ongoing basis. If possible, 

the repository should be interactive, allowing NCI advocates to rate 

resources and/or comment on how they were able to apply the 

information. A process for ongoing maintenance of resources and 

user feedback is essential. 

Once a comprehensive environmental scan is conducted and those 

resources are made available, the work group should engage in 

10 Advocates in Research Working Group 
a gap analysis to identify unmet information and training needs 

within the research advocacy community. Once identified, the work 

group should engage the broad cancer community in an effort to 

collectively develop materials that meet the resource needs of the 

research advocacy community. 

Develop Resources that Enable Advocates 

to Develop Professionally 

NCI should consider creating resources to support research advocates in becoming highly skilled. These resources could include 

information about the skill sets and knowledge bases important to 

success, information on how to attain the knowledge and skills, and 

a template that would enable advocates to plan their developmental 

process. Participation in training could be encouraged by coupling 

opportunities for engagement with demonstrated knowledge and 

skills or training course completion. For example, a minimum 

number of educational activities per year could be a requirement 

for continued consideration for NCI activities. 

Expand Opportunities for Formally and 

Informally Mentoring Advocates 

Mentoring is a highly effective method for enhancing knowledge 

and skill sets. Pairing new advocates with experienced research 

advocates provides opportunities for growth for all participants and 

is an excellent training mechanism. Research advocates who have 

extensive and varied experience and an in-depth understanding 

of NCI and the research process should be considered as mentors. Individuals being asked to mentor others should be provided 

with training and guidance about how to be an effective mentor. 

Engaging seasoned and highly effective research advocates as mentors will expand the cadre of highly qualified advocates available to 

NCI and the wider community. Additionally, this mechanism may 

be particularly useful in helping train and prepare a more diverse 

cadre of NCI advocates. 

Develop Resources to Support NCI 

Staff in Engaging Advocates 

Many NCI staff members show an interest in engaging advocates 

but are unsure about how to do so effectively. As such, support 

for NCI staff is vital for continued and expanded engagement of 

research advocates across the spectrum of NCI activities. NCI should 

provide training, resources, and tools to support staff in identifying when advocates can play a positive role and how to effectively 

engage them. These resources could include one-page fact sheets, 

check-lists, online training modules, and case studies demonstrating how others have successfully partnered with advocates. These 

resources will complement the personal facilitation process discussed 

in Recommendation 5. 

Recommendations 11 
 

Recommendation 5 

Facilitate 

Leverage NCI’s 

Centralized Resources 

and Expertise 

to Better Inform 

and Support the 

Engagement Process 

To maximize the benefit of engaging advocates in the research process, support is essential throughout an advocate’s involvement in 

an activity. As nonscientists, advocates bring a diverse perspective 

to the research process, and although this diversity is part of the 

inherent value of their involvement, it can increase the likelihood 

of miscommunication. 

Currently many DOCs seek OAR support in the selection and 

engagement of advocates in their work; however, NCI does not have 

a systematic facilitation process or established policies to guide 

decision-making around a number of issues, such as compensation 

or conflict of interest. The ARWG recommends that OAR act as a 

clearinghouse to facilitate the effective engagement of advocates 

throughout the research process. This centralized role will allow 

OAR to increase the quality and consistency of advocate engagement within NCI and reduce the administrative burden of doing 

so. A comprehensive advocate involvement process facilitated by 

a centralized office with expertise in advocacy will maximize the 

benefits of engaging advocates in the research process. Likewise, 

such a centralized resource would be well positioned to track, 

evaluate, and maintain an effective process. 

Develop Guidelines and Promising Approaches 

that Facilitate the Engagement Process 

OAR should build upon the guidelines provided in the ARWG’s 

report and create a portfolio of promising approaches to provide 

an overall framework for advocate engagement at NCI. To ensure 

its usability, guidance should be developed in conjunction with 

seasoned advocates and researchers with experience engaging 

advocates. Such guidance should address numerous topics, such as 

advocate selection, role definition, orientation and harmonization 

into existing projects, term limits, compensation, and conflict of 

interest. This guidance will enhance role clarity, provide a point of 

reference, and promote consistency across the constantly evolving 

scientific landscape. All such guidance should be widely distributed 

within NCI and across the cancer advocacy community and be integrated into training materials and resources as they are developed. 

Facilitate Engagement to Support Effective Relationships 

Communication is imperative to success. OAR should support both 

NCI staff and advocates throughout the engagement process as 

needed. OAR should use the above-mentioned guidance to support 

NCI staff members in further developing promising approaches for 

how they engage advocates. OAR should facilitate communication, 

helping all parties come to agreement about the wide array of areas 

where miscommunication can create potential problems. These 

areas include participant roles, responsibilities, and expectations; 

knowledge and skills necessary for full participation; orientation 

and harmonization into existing projects; potential confidentiality 

12 Advocates in Research Working Group 
and conflict-of-interest issues; training needs and mentoring opportunities; desired outcomes; and more. 

Specific opportunities for feedback should be provided during the 

early part of the engagement process and throughout the activity. 

This feedback should specify the elements of the engagement that 

work well and those that need improvement. Private conversations between the researcher, the advocate, and OAR staff should 

be encouraged as an effective way to clarify and address areas of 

confusion or concern as early as possible. 

NCI staff should consider advocate engagement at the beginning of 

all projects and seek advocate involvement as early as is appropriate as well as throughout the life cycle of the project. This process 

enables advocates to be fully engaged and maximizes their contributions. Projects frequently include multiple opportunities across 

various roles for advocate partners. 

To make evidence-based decisions about the best ways to engage 

advocates, NCI must track and evaluate its research advocate engagement process. Such an evidence base will allow NCI to continue 

as a leader in identifying best practices and innovations in how 

advocates are engaged in research. NCI does not currently track 

and evaluate all advocate engagements because many advocates 

are engaged through processes independent of OAR. 

No formal feedback system exists to provide advocates or staff with 

timely guidance that would allow them to engage more effectively 

and learn from mistakes or miscommunications. Evaluation has 

been inconsistent and, when it has occurred, has been informal 

and retrospective, centered on participant satisfaction alone. Such 

evaluation has not included process improvement or the identification of outcomes related to engaging advocates in the research 

process. Without the in-depth understanding that comes from 

compiling and evaluating a comprehensive set of data, not only are 

decisions about how, when, and where to engage advocates not 

fully informed, but it is difficult to define a clear model of success 

for advocate engagement. 

NCI should consider several common issues when designing an 

approach to tracking and evaluating advocate engagement. First, 

evaluation data must be either qualitative or quantitative. Anecdotes 

are not independently sufficient to inform programs. Data should 

be collected prospectively and longitudinally to evaluate long-term 

trends in research advocacy as well as individual engagements. 

Finally, because there will be a dearth of data available in the beginning of this effort, a broad set of baseline data should be collected. 

Common technical systems should be identified and employed 

throughout the engagement process to allow for comprehensive 

information tracking. Because evaluation needs will change over 

Recommendation 6 

Monitor 

Track and Evaluate 

the Advocate 

Engagement Process to 

Implement Continuous 

Improvements and 

Develop an Evidence 

Base around Engaging 

Advocates in Research 

Recommendations 13 
time and data sets will grow with continual evaluation, NCI will 

need to be flexible in its approach to evaluation. 

Evaluate Each Individual Activity for 

Quality Control and Feedback 

Assessing each advocate activity provides a mechanism for immediate quality control and participant feedback, allowing the system 

and participants to identify and address successes and problems 

immediately and adjust as new developments and insights arise. NCI 

staff and advocates should complete formal, but not burdensome, 

evaluations of their experiences at the end of each engagement. 

OAR may consider additional opportunities for evaluation, such as 

annual reviews, for activities in which advocates are engaged on 

a longer-term basis. 

Evaluate the Effectiveness of the 

Advocate Engagement Process 

Tracking and evaluation should monitor how effectively each component of the process is working and promote efficiency in the 

advocate engagement process. For example, how well prepared 

was the advocate to successfully engage in the activity, as judged 

by the advocate and NCI staff? Efforts should be made to track data 

related to cost, time, utilization rates, attrition, participant satisfaction, success rates, and other metrics related to each function of the 

process. Additional monitoring needs could include effectiveness 

of and advocate satisfaction with available training and resources; 

NCI staff satisfaction with availability of advocates who have the 

desired qualifications; and status of the NCI advocate pool, including diversity, recruitment success, and other issues. 

Evaluate the Outcomes of Engaging Advocates 

Throughout its work, the ARWG uncovered a need for improved 

understanding of the impact of engaging advocates in scientific 

activities. Accordingly, NCI should collect data on advocate activities 

to improve understanding of the spectrum of outcomes associated 

with advocate engagement and develop an evidence base. These 

data also will allow the Institute to understand what roles advocates 

play at NCI and determine how these roles can be maximized and 

may change over time. NCI should use data collection mechanisms 

that avoid favoring previously identified outcomes and demonstrate 

what effect an advocate had on the outcome of an activity. Such data 

would be able to answer such questions as: Which results would 

not have occurred if the advocate were not present? How did the 

advocate change the group dynamic or group conversation? What 

were the advocate’s independent contributions? 

Explore Correlations between Advocate 

Skill Sets and Activity Outcomes 

Each advocate brings a unique set of skills and experiences to the 

research process. Understanding how these skills and experiences 

promote success within different activities is important for engaging 

14 Advocates in Research Working Group 
the right advocate at the right time. NCI should collect data to 

identify potential correlations between the knowledge and skills 

an advocate exhibits and the reported outcomes of the advocate’s 

involvement. Understanding the most successful advocate-activity 

matches would allow NCI to enhance advocate training and develop 

the skill sets shown to lead to positive outcomes most often. For 

each advocate, NCI might consider collecting data on profession, 

professional skill sets, formal education, scientific training, advocacy 

training, involvement with advocacy organizations, primary advocacy 

activities, experience in NCI activities, and volunteer experience. 

A comprehensive tracking and evaluation process will allow NCI to 

see that advocates are being engaged and enable OAR to anticipate 

the types of skill sets and knowledge that will add value to NCI 

activities. Collecting longitudinal data on specific skill sets requested 

by NCI staff also will inform NCI’s outreach plan and enable OAR 

to recruit advocates who meet specific NCI research needs. 

NCI is uniquely positioned to identify models and concepts that set 

the standard for effective advocate involvement in the research process and to distinguish individuals and organizations who exemplify 

this standard. Recognizing and promoting successful advocateresearcher collaborations support retention efforts by highlighting 

the benefits of engaging advocates in the research process as well 

as best practices for doing so. It also shows appreciation for those 

involved in the process. 

Although some advocates have been individually recognized by NCI 

staff members, there has been no systematic effort to recognize 

advocates or NCI staff. Efforts related to other recommendations, 

such as effective assessment and matching of advocates, also are 

likely to increase the retention rate of both NCI staff and advocates. 

Promoting successful involvement of advocates in NCI programs 

will enhance understanding, transparency, and trust of NCI in the 

advocacy community. 

Retain Highly Qualified Advocates 

Best practices to retain advocates should be infused throughout the 

engagement process. Advocate retention must be balanced with the 

needs to recruit more diverse advocates and to consistently recruit 

advocates new to NCI. Some of the best practices that are likely 

to retain advocates include timely and effective communication 

with advocates before, during, and after engaging them; providing advocates with more opportunities to be involved; increasing 

transparency about where and how advocates are engaged across 

NCI; providing external incentives, such as access to journals, formal training opportunities, teleconferences, or webinars, which not 

only allow advocates to stay connected to NCI and other advocates 

but also increase advocates’ skills even when they are not working on a specific project; and recognizing the contributions made 

by advocates and, specifically, how their involvement benefits the 

research process and the patients it serves. 

Recommendation 7 

Promote 

Develop a Process to 

Retain and Recognize 

Advocates and NCI 

Staff who Successfully 

Work Together and 

Communicate These 

Successes across the 

Research Community 

Recommendations 15 
Encourage the Use of Promising Approaches for 

Advocate Engagement among NCI Staff 

The ARWG identified strategies to encourage NCI to effectively 

engage research advocates, many of which will occur as the recommendations are implemented. For example, identifying highly 

qualified advocates and effectively preparing them for each project 

can help encourage participation—as can providing support and 

guidance to staff and researchers and acknowledging and addressing barriers. 

Promote Advocate-Researcher Collaborations 

Stories of successful engagements should be developed and disseminated to the advocacy community through such mechanisms as the 

OAR website, NCI Nealon Digest, and conferences. Advocates should 

be encouraged to share their own stories with OAR. Communicating 

where and how advocates have been engaged at NCI will help 

promote the Institute’s engagement of advocates and may address 

concerns that advocates are not being engaged. NCI should develop 

a new OAR webpage that highlights past advocate involvement, 

features current and upcoming opportunities, and details recent 

projects in which advocates participated. This information would 

help advocates better understand how NCI engages advocates and 

the types of individuals being engaged. 

NCI can increase the knowledge and utilization of advocates by 

developing such materials as case studies about successful engagements and using them to inform NCI staff about the process for and 

benefits of engaging advocates. These success stories can be shared 

through presentations at brown bag sessions and in NCI and NIH 

media, such as the NCI Cancer Bulletin, the NIH Catalyst, the NIH 

Record, the NIH Health Beat, and NIH podcasts. An award for successful staff-advocate collaborations presented during the NIH or 

NCI award ceremonies would not only recognize individuals who 

have set a standard for effective engagement but also promote the 

idea of involving advocates in research in a venue supported by 

leadership. Recognizing staff and researchers for the time and effort 

spent involving an advocate is important and should be formalized 

whenever possible. 

I

n summary, promoting effective advocate involvement in the 

cancer research process allows for the collective experience 

of scientists and advocates working together to help enhance 

research outcomes. NCI’s long history of support of cancer research 

advocacy has made it a leader in this field. 

The ARWG’s recommendations build on the prior success of NCI 

and identify new opportunities to enhance that success. A number 

of the elements contained in the recommendations are innovative 

in their approach. Of note are: 

n Evaluation tools developed alongside each component of 

the system, 

16 Advocates in Research Working Group 
n

n

Ongoing consultation with external collaborators and stakeholders on the specifics of each recommendation area, and 

The ability to regularly report on advocate engagement in NCI 

activities through tracking and evaluation efforts. 

Implementation of the ARWG’s recommendations will occur in a 

phased approach, based on available resources. Because advocacy 

engagement is not a new enterprise for NCI, these recommendations 

will be implemented as enhancements to the existing advocacy 

engagement infrastructure. 

OAR will coordinate and manage this implementation. Advocates 

currently engaged in NCI activities will be asked to participate in 

the testing of enhancements put in place as a result of these recommendations. The ARWG is encouraged that OAR can begin to 

implement these recommendations immediately. The ARWG noted 

that without a centralized system of implementation and process of 

evaluation, these recommendations are likely to be less effective. 

Although the ARWG recommendations are primarily intended to 

meet the specific needs of NCI, the ARWG hopes that its report 

will be applicable across multiple research environments. In this 

way, it can serve as a guide for how the broader research community can engage research advocates in their efforts to further 

scientific discovery and, ultimately, reduce the burden of disease 

and improve lives. 

Recommendations 17 
NIH Publication No. 11-7687
 

Printed March 2011