Creating Your Own

State-Based Lung Cancer


Whether you are new to lung cancer coalition-building or
not, this guide is to help you succeed in building a state-
based effort to support the goals of the National Lung
Cancer Roundtable.

Let’s Get Started


Guide Outline

Click anywhere in the outline below to jump to a step. You may also scroll down to view all steps in order.

How can we help you?

Select your experience level below.

State coalition-building is brand new to me.

Start from the beginning and take your time going through each step.


I have experience with coalition-building, but am new to lung cancer.

I have experience with coalition-building, but am new to lung cancer.

You’ll find suggestions for building a lung cancer-oriented partner network by visiting “Build a network of multi-sector partners and stakeholders”. We’ll guide you from there.


I need a formal process for my initiative.

Walk through the worksheets for each activity to make sure all your pieces are in place and to see what you might be missing.


All the pieces are in place but I’m running into roadblocks.

Head to Practical Tips under the challenging activity and the Troubleshooting Guide at the end of each Phase.


Guide Outline

Phase 1: Getting Started


Assess the landscape of current lung cancer initiatives in the state to:

  • Find potential partners
  • Avoid redundant efforts
  • Identify what’s missing (opportunities to make a difference)
  • Provide the foundation for your initiative



Build a network of multi-sector partners and stakeholders to:

  • Increase stakeholder engagement
  • Introduce you to diverse ideas you hadn’t considered
  • Provide necessary influence to get through roadblocks.
  • Lead to more sustainable partnerships and more generalizable results



Establish your structure to set the tone for how all the partners will interact and move initiatives forward.


Explore Helpful Resources to supplement your work.

  • Worksheets
  • Practical Tips
  • Troubleshooting


Phase 1 – Step A

Assess the Landscape of Current Initiatives in the State

A landscape assessment helps engage the right partners, ensure the right priorities, avoid redundancies, and identify opportunities to fill gaps. Below you will find some of the entities commonly working on lung cancer initiatives. If they aren’t, they may know who is or funding sources to help. You do not need to identify 100% of the lung cancer activities in your state before moving an initiative forward. This is not an exhaustive list but meant to give you a general idea of where to start. Use the worksheets under Helpful Resources to keep track of what you find.

Who To Contact

What to Look For

Lung cancer content in the state comprehensive cancer control plan

Tobacco control/smoking cessation and radon prevention activities

Lung cancer-related needs/priorities

What to Look For
Lung cancer screening facilities and treatment facilities located in the state/region

Lung cancer trends (screening/treatment)

Lung cancer-related needs/priorities

Where to Look
Accredited lung cancer screening programs in your state through ACR and Go2Foundation

Cancer Center members of the NLCRT

What to Look For

Grant-funded projects related to lung cancer

Where to Look

NIH Research Portfolio Online Reporting Tools (RePORT)

What to Look For
State presence or state-level initiatives of national organizations

Local lung cancer nonprofits

Lung cancer-related needs/priorities

Where to Look

Search on Charity Navigator or Guidestar (requires free registration)

What to Look For
Lung cancer initiatives being supported

Lung cancer-related needs/priorities

Where to Look

Contact your state chair for the American College of Surgeons Commission on Cancer.

What to Look For

What’s important to the people impacted by lung cancer in the state?

Lung cancer-related needs/priorities

Where to Look

Lung cancer support groups in your state

Health Equity Assessment

Ask about health access and health care disparity issues addressed by existing initiatives.

What have existing lung cancer initiatives done to focus on health access and disparities?

Phase 1 - Step B

Build a Network of Multi-Sector Partners and Stakeholders

Having a diverse network can increase engagement and lead to more effective solutions. Engaging the right partners can help overcome roadblocks you might not anticipate. While some initiatives can be impactful with just one or two types of partners focused on a narrow goal, diversifying your network with a variety of partners from the list below has lots of advantages.

Stakeholders Active in Current Lung Cancer Work (from Phase 1 - Step A: Landscape Assessment)

  • State health department/Comprehensive Cancer Control Program
  • Healthcare systems and providers
  • National or local nonprofits/advocacy organizations
  • Academic research centers
  • Patients/caregiver groups
  • State/Regional medical associations/societies

Additional Partners to Consider:

  • Political leadership
  • State health insurance exchange
  • Large employers
  • Insurance payers (including private, Medicaid, and Medicare)
  • Industry (pharma and medical technology)
  • Federally Qualified Health Clinics (FQHCs)

Health Equity Assessment

Identify a partner(s) that represents populations that are underrepresented or marginalized based on race, ethnicity, income, education, gender, or different abilities or who can engage these populations.

Phase 1 - Step C

Establish Your Structure

State Programs

State Comprehensive Cancer Control Program Roles

The state comprehensive cancer control program is an important partner in advancing your lung cancer efforts. As you consider your structure, connect with your CCC program to talk about what role they can play.

Convener: Active, lots of capacity/resources

Collaborator: Moderate capacity/resources to share

Cheerleader: Less ability to engage in activities, but able to support and promote the work.


• Established network of partners
• Staff support through the CCC coalitions
• Access to CDC funds and (potentially) state appropriations
• Goal alignment with both the state cancer plan and coalition priorities
• Close interaction with other department of public health cancer programs
• Access to resources, including professional expertise
• Access to announcements of new funding opportunities
• Alignment with CCC coalition advocacy agenda


• Potential restrictions on fundraising
• Potential restrictions on lobbying and advocacyefforts
• CCC coalition scope and state cancer plan may include priorities other than lung cancer


• Fewer restrictions on fundraising
• Fewer restrictions on engaging in lobbying and advocacy
• Flexibility to focus on scope or work that is different than the CCC coalition scope and state cancer plan


• Time-consuming to start a 501c3
• Time-consuming to fundraise
• Need to identify paid or volunteer staff
• Additional effort to coordinate with the CCC coalition


• Technical support/assistance from program officer
• Connections to other funded initiatives to form broader initiatives
• Guaranteed funding for a set period


• May need to identify non-profit fiscal agent for funds management.
• Potential restrictions to spending
• May have salary caps
• May not be built into a structure to sustain beyond project period.

Key Member Roles

Whichever structure you choose, identify partners who have the skills and ability to serve in several different leadership and administrative roles and complete critical tasks, whether in a paid capacity or as volunteers. A successful lung cancer coalition includes the following functions:

Champion: Often a passionate, charismatic expert who can provide expertise and intellectual leadership, connect the lung cancer initiative to a network of peers, and legitimize the effort to spur the involvement of others.

Convener: Coordinates the initiative and helps to ensure clarity on the agenda and vision alignment. Neutrality is important. This means that the convener isn’t perceived to have a specific personal interest. If the partner with the most capacity to convene groups is not perceived as neutral, build in time to build trust and cohesiveness within a group to maximize effectiveness.

Project Manager: Designated project management support is critical to moving an initiative forward, especially when team members are not full-time staff on the initiative. Depending on the structure, project management support could come from the Comprehensive Cancer Control program or from funding through the 501(c)3 organization or grant.

Critical Tasks for Convening Partner and Project Manager

• Coordinating and planning calls and meetings, including drafting meeting agendas and minutes

• Following up with committee members on assigned tasks

• Conducting project management

• Finding and coordinating with speakers

• Doing background research/finding needed data

• Confirming and orienting new members

• Developing and maintaining a website

• Maintaining relationships with state legislators

• Writing grant applications

• Managing fundraising activities and distribution of funds

• Gathering data to demonstrate program impact

• Drafting annual reports

• Writing and distributing news updates

Phase 1

Helpful Resources


Phase I Asses The Landscape

Read More

Phase I Establish Your Structure

Read More

Phase I Build A Network

Read More

Phase I Getting Started Summary

Read More

Practical Tips

Step A

Assess the Landscape

Keep Moving

-We got stuck feeling like we couldn’t move forward unless we knew every single initiative that was happening. We realized it’s ok to move forward even if you don’t know every single active lung cancer initiative. We know we’ll identify more along the way.

Expand Your Reach

-Ask your sources “who else do you recommend I speak with about this?” They know who is working in the lung cancer space and might identify sources you hadn’t thought of.

Step B

Build a Network

Build Interest

– “Use your research to show the population need and make a strong case for a statewide focus on lung cancer. Share your vision for the new initiative or approach and explain how it is different from what has been done before or how it complements what is already being done.”

Identify Partner Motivation

-“Do research on what is important to the organization or person you are hoping to partner with. Ask lots of questions – find out something new about their organization, hear about how they
became involved with the organization, ask where they see the organization going in the next five years. Listen for points of potential cross-over with your initiative. The most successful partnerships are win-win
situations where both parties gain from the process.”

Diversify Your Partners

– “Partners should also include representatives from the target population to share challenges, barriers, assets, and capitalizing on local resources (culture, practices, etc.).”

Define the Ask

– “The most important discussion is clearly defining your expectations of the partner and what they will get from participating. For examples, are you looking for It is also good to engage the organizations leadership to assure that they support staff and their participation in the initiative.”

Invest in Effective Support

– “High quality facilitation has always been key in any initiative that I have participated in. I have examples from both good and bad facilitators that have made all the difference in the group dynamics, and the resulting collaborative efforts. To bring diverse groups together, facilitators need to be skilled at balancing power differences (in educational attainment or title), allowing all voices to be heard, and keeping groups on task.“

Leverage Your Network

– “I called all the pulmonologists, oncologists, and thoracic surgeons around the state that I knew personally. I explained the need for a State Lung Cancer Round Table, what the opportunities for improvement were, and what the commitment might be. I asked them if they would suggest or enroll any colleagues that I or they could call. I gave them specific opportunities to serve on or chair
specific committees. I told them we would meet monthly by phone and annually in person.”

Step C

Establish Your Structure

Communicate Your Neutrality

– Consider working with with a marketing and communications firm to develop a neutral logo and a look and feel to brands and marketing and then used the branding consistently across
communications efforts. Use neutral branding but list all major partners on slides, publications, and other materials to share credit and give exposure.

Find an Umbrella Organization

– Even if you don’t have the capacity to create a new 501(c)(3) organization, there may be an existing 501(c)(3) that would be willing to house your initiative. If a lung cancer initiative
connects to their mission, they may also be able to provide staff time and other resources, help apply for funding, and in general save time and effort.


• It’s ok to move on to the next task even if you think something is missing. You may discover more along the way.
• Consider putting out communications that can reach initiatives and get them to come to you.

• Consider a person or entity who could be considered a non-biased convener with some additional work building trust and creating a transparent approach to sharing credit.
•Allow the convener with the most capacity to take this position, but petition all supporting partners/institutions to provide more time for coalition building.
•Have more than one “co-convener”. Just make sure to clarify roles and how the co-conveners will operate as a team.

• Be transparent and make sure all stakeholders have bought-in to the initial steps.
• “Take the pulse” of the group often. Ask survey questions regarding clarity and agreement with current roles, mission, and direction. Provide multiple avenues for feedback (e-mail, anonymous surveys, simple polls/hand raising. Some people are not comfortable speaking out in a group.

• Consider whether lung cancer initiatives can partner with existing efforts. A full roundtable does not need to be built in every state. If there are existing campaigns around other cancers/all cancers, they may be willing to lend resources that can be adapted toward lung cancer.