Office of Cancer Communications

Building 31,Room 10A24

Bethesda, MD 20892

November 1997

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health

Designing the Blueprint

Role of the Planning Group

The DCLG Planning Group activities began almost immediately upon appointment of its members in December 1996. Their first task was to review a draft proposal on the initial role of the DCLG. The Planning Group provided substantive comment on this proposal and clarified their own role. Once revised to reflect Planning Group input, this proposal provided the conceptual basis for the planning process.

The Planning Group next focused their efforts on designing the blueprint by which the DCLG would be created. Their mission was to help define the initial role of the DCLG, the criteria for members, and categories for the group as a whole, and to design the screening, scoring, review, and nomination process. The Planning Group's success would be largely due to the commitment of its members and their determination to work together to bring the DCLG to fruition. Teleconferences were held initially, and a two-day meeting was set for March 1997.

The Design Process

OLA prepared the Planning Group for a productive meeting. Planning Group members received a number of materials in advance of their meeting, including background information on NCI and its committees, information about existing models of consumer involvement in use by other federal agencies, and suggestions from the broader cancer advocacy community about eligibility criteria and categories for DCLG members.

A limited number of models was identified that used policies and procedures relevant to the tasks of the DCLG Planning Group. Although no complete templates were found, some elements of these models are reflected in the process adopted by the Planning Group for nominating and evaluating candidates for the DCLG. The models for consumer involvement that were reviewed included:

• U.S. Army Medical Research, Breast Cancer Research Programs
• U.S. Food and Drug Administration, Reinventing the Regulation of Cancer Drugs
• National Cancer Institute, Southwest Oncology Group

A Federal Register notice and an OLA mailing to national cancer advocacy and voluntary organizations outlined the proposed purpose of the DCLG, described the role of the Planning Group, identified the time and location of the Planning Group's March meeting, and invited input from "advocacy or voluntary organizations related to cancer" that might be useful for accomplishing the meeting's objectives. Input received in response was provided to the Planning Group. All these efforts not only contributed to the Planning Group's decision-making, but helped to promote awareness of the plans for the DCLG and the call for nominations.

On March 13-14, 1997, the DCLG Planning Group met for a day and a half to accomplish the following tasks:

• Identify a screening process for selecting a pool of candidates who met or exceeded basic eligibility requirements for DCLG membership
• Identify criteria (qualifications) for use in assessing individual nominees for the DCLG
• Identify a scoring and review process that would involve using the criteria to evaluate the nominees for the DCLG
• Identify categories that would define the characteristics of the DCLG as a whole
• Identify a nomination process that would encourage an adequate pool of candidates with multicultural diversity nominated from the cancer advocacy community who were likely to be qualified and motivated to serve on the DCLG

The process for accomplishing all of these tasks in a compressed time period relied heavily on the use of accumulated background materials, premeeting teleconferences and assignments completed by the Planning Group members, and an expert facilitator with an in-depth knowledge of NCI and familiarity with the issues and concerns of the cancer advocacy community. The NCI Director presented his vision of the DCLG to the Planning Group. He demonstrated the importance NCI attaches to establishing better two-way communication between the scientific community at NCI and the consumer advocate community, and the value NCI places on the views of that community.

Results

Results of the Planning Group's work are summarized below, and their implementation discussed in Part Three of this report.

Eligibility Requirements for Individual Members.

Eligibility requirements were minimum requirements for participation in the DCLG. A member of the DCLG had to:

• Be involved in the cancer experience: a cancer survivor, a person affected by the suffering and consequences of cancer (i.e., a parent or family member), or a professional/volunteer who works with survivors or those affected
• Represent a constituency with which s/he communicates regularly on cancer issues and be able to serve as a conduit for information both to and from his/her constituency

Another essential membership requirement was a commitment to participating in the DCLG; however, unlike the other eligibility requirements, this one was not to be used as a basis for initial screening of nominees, but assessed as part of the more in-depth evaluation of candidates.

The Planning Group decided not to establish any minimum requirements for education or facility with the English language, and directed that questions relating to education, language, or employment history not be included on the application. Such questions were judged to have no direct bearing on a candidate's qualifications to serve on the DCLG and might well discourage nominations of candidates who could bring other important qualities to the DCLG. Candidates would, however, be evaluated on their ability to communicate effectively.

Criteria for Evaluating Individual Candidates.

Nominees meeting the eligibility requirements related to experience with cancer and representation of a constituency were to be further assessed based on the following criteria:

• Cancer advocacy experience
• Ability to communicate effectively
• Ability to represent broad issues, think "globally"
• Ability to contribute to an effective group process
• Leadership ability

Characteristics of the DCLG as a Whole.
The Planning Group felt strongly that not only must individual members meet the criteria outlined above, but the DCLG as a group should reflect the breadth and the diversity of the cancer advocacy community. The following group characteristics were recommended:

• Multicultural diversity
• Representation of a broad mix of cancer sites
• Representation of the medically underserved
• Men and women
• A range of organizations (local/regional and national)
• Age diversity
• Geographic diversity (including rural/urban mix )

The Planning Group also urged NCI to make every effort to ensure that racial/ethnic diversity was reflected in the DCLG, striving to identify qualified candidates representative of special populations.

Screening, Scoring and Review Process.

• Screening. All nominees would be screened to determine if they met the eligibility requirements for experience with cancer and representation of a constituency. Those who did not meet these requirements were not eligible to serve as members of the DCLG.
• Scoring. A numeric scale was to be used to score all eligible nominees according to the established criteria, based on information provided in the nomination package. The content of this nomination package is outlined later in this report.
• Assessing the nominee pool. All eligible candidates were to be evaluated based on their scores.
• Telephone follow-up with candidates. As a supplement to the written nomination, follow-up conversations with some highly qualified candidates would be held to elaborate on information provided in the formal nomination and clarify the candidates' understanding of the role of the DCLG.
• Preparing the final slate of candidates. After the final evaluation of the candidates' qualifications, a list of candidates would then be presented to the Director, NCI, who would select the 15 DCLG members.

Nomination Process

Sources of nominations. Nominations could come from organizations or individuals. Self-nominations were to be accepted.

• Content of the nomination package. The nomination package should include information provided both by the candidate and by others who could attest to the candidate's qualifications to serve on the DCLG. Specifically, this information should document 1) the extent to which the candidate met the eligibility requirements and the criteria established by the Planning Group, and 2) characteristics relevant to achieving the broad mix of individuals sought for the DCLG as a whole.
• Call for nominations. To encourage nominations from a diverse community of cancer consumer advocates, a broad range of groups would receive the announcement of the DCLG and the call for nominations, including grassroots, regional, and national organizations. A variety of materials that these groups could use to disseminate the call for nominations to their members should be prepared and distributed.
• Time frame for implementing the nomination process. The call for nominations should last for at least three months. The deadline for receipt of completed nominations was set for September 15, 1997.

Issues and Challenges

Good preparation was key to the successful Planning Group meeting. The development of a comprehensive blueprint required the group to address a number of complex issues. A few of the key issues which were discussed follow:

Defining "The Cancer Experience."

One of the eligibility requirements on which virtually all Planning Group members agreed was the requirement that DCLG members be involved in "the cancer experience." How to define this term for purposes of assessing candidates for the DCLG was one of the first issues addressed at the Planning Group meeting. A number of different groups were identified who might qualify as having the cancer experience:

• Personal survivors of cancer
• Parents of children with cancer
• Family members of cancer patients
• Health professionals with a strong record of cancer advocacy
• Consumers who were cancer advocates but not personal survivors

In the final analysis, the Planning Group was concerned that the use of a narrow, highly exclusionary definition might arbitrarily exclude potentially strong candidates. They chose instead the following broad definition of someone who was involved in the cancer experience:

A cancer survivor, a person affected by the suffering and consequences of cancer, or a professional/volunteer who works with survivors or those affected.

Defining a "Constituency."

In addition to the requirement that candidates be involved in the cancer experience, the Planning Group agreed that candidates must be identified with a constituency in order to be eligible for the DCLG. How to define that constituency was not immediately clear. Did it mean that a candidate must be an officer in an advocacy organization? Did candidates have to have any affiliation with an advocacy organization? While it appeared likely that the majority of candidates would have formal links to such an organization, the Planning Group recognized that exceptions were possible and, once again, chose to be inclusive in their definition: a candidate was required to represent a constituency (formally or informally) and had to be able to demonstrate that he or she communicated regularly with that constituency on cancer issues and was able to serve as a conduit for information both to and from that constituency.

Achieving Diversity.

Perhaps the most challenging issue that confronted the Planning Group was how to achieve appropriate diversity within the DCLG. They wanted to ensure multicultural representation among the 15 DCLG members, along with other important characteristics; e.g., gender and age diversity, representation of a range of cancer sites, and types of organizations. Alternative approaches to achieving this diversity were discussed at length. The Planning Group would have preferred to stipulate that at least one-third of DCLG members belong to a racial/ethnic minority. However, NCI could not implement this because federal law precludes selection of individuals based on race. The Planning Group urged NCI to make efforts to ensure that racial/ethnic diversity would be reflected in the DCLG. They also developed a strategy for promoting the call for nominations that would reach diverse groups, prompting nominations from African Americans, Asian Americans/Pacific Islanders, Hispanics, and Native Americans as well as non-Hispanic whites.

The Blueprint.

With two exceptions, the recommendations of the Planning Group became the blueprint for conducting further steps in the development of the DCLG. One of those exceptions related to the role of the Planning Group in the selection process. Their charge had been to help define the initial role of the DCLG and to define the criteria for individual members, the characteristics of the group as a whole, and the screening, scoring, and nominations processes. However, they were also interested in going beyond their original charge and participating in some review and assessment of individual candidates and in sending forward a list to the NCI Director for selection. While NCI recognized that the Planning Group had much to contribute to the assessment process, ethical concerns about perception of conflict of interest and problems of fairness of process precluded their involvement in the selection process. The issue of concern was public perception of bias when an individual from one organization is asked to evaluate the work or attributes of either members of his/her own organization or an individual from another organization competing for a limited number of appointments.

In another area, federal law precluded mandating multicultural diversity on the DCLG in the specific manner initially proposed by the Planning Group. Nonetheless, NCI was committed to seeking and finding the best qualified candidates from all population groups, including minorities and the medically underserved. A promotion plan for the DCLG nominations, developed by OLA in conjunction with the Planning Group, successfully reached a large number of diverse and highly qualified candidates. Results of the Planning Group meeting provided the basis for a fair and objective assessment of all candidates and resulted in a DCLG with all the strengths and dimensions of diversity that the Planning Group hoped to achieve.

Planning Group members received input and were involved throughout the implementation of their blueprint. For example, they reviewed the proposed nomination package and guidelines for scoring candidates before they were finalized.

Identifying Issues for the DCLG.

In addition to designing the blueprint for the DCLG, the Planning Group identified a number of issues that they wanted to pass on to the DCLG for possible consideration:

• Accessing quality cancer information
• Promoting behavioral approaches to cancer control
• Increasing participation in clinical trials
• Assessing NCI consumer publications
• Accessing cancer treatment under managed care

The Planning Group also suggested that NCI call upon the expertise of all the qualified DCLG candidates for various NCI activities, whether or not they were selected for the DCLG. NCI concurred and developed a mechanism to do this.

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