Module 1: Getting Started
Chapter 1.1 - Building a Leadership Team
According to Marshall Ganz5, community engagement requires a leader, who is willing to step out and help guide and motivate their community to create change.
This requires that a leader who can:
- Share the story of why they were called to lead, the story of those they hope to engage, and their collective story of action.
- Build intentional relationships and recruit a team with a shared purpose, shared goals, and a shared agenda.
- Recruit funders who can help convert their resources to power and their strategy to positive and measurable action.6
Goal: To help you assemble a leadership team, determine your area of focus, identify a preliminary set of goals and hold your initial convening.
Once leadership has been identified, the next step is to identify and recruit a small group of two to five people who are willing to come alongside and help lead the effort as a leadership team, and who are involved in advanced illness. This group may include:
- Health insurance companies, health systems, and physician organizations
- Palliative care, and hospice providers.
- Representatives from patient advocacy organizations (e.g., Cancer Support Community, Alzheimer’s Association)
- Organizations interested in aging (e.g., AARP, Area Agencies on Aging)
- The faith-based community.
It is recommended that you include a person with an advanced illness and a family member or caregiver in the group
Please find the Community Contacts table on Pg. 10 of the full Community Engagement Toolkit Companion Guide. To download the guide as a Word document, please click here.
- Use the Community Contacts to generate the names of individuals to be part of the leadership group and individuals who need to be at the table.
As you begin this process, it is important to be aware of other available resources that may make your efforts easier:
- Review the additional resources links to help you plan and develop your Lead and Leadership Teams.
Effective leadership models include:
- Shared responsibility and mutual accountability for a common goal.
- Use of ground rules adopted by all participants.
- Listening empathically to community members’ personal experiences.
- Diversity that reflects the community’s culture, norms, and values.
- Awareness of related work in the community by coalitions and partnerships
- Why am I involved, and why should others also be involved?
- Who else may be willing to help lead the effort?
- Who needs to be at the table to make this work?
- Who knows those individuals and is willing to invite them to participate?
- Review the Snowflake Model of leadership and organization: The Snowflake Model
- Set up your shared leadership model using the following questions as a guide:
- What are your leadership team’s rules?
- What are each team member’s responsibilities?
- What community stakeholders to we need to hear from?
- Does our team reflect the diversity of our community
- What other organizations and coalitions can we form partnerships?
After you have gained commitments from those who have been invited to help lead the effort, you will want to bring the group together to determine where you would like to focus.
In helping reshape and reorient advanced illness care, you may seek to encourage patients to share their stories.
Reflection and Discussion
- Who else needs to be at the table to make this work?
- How will we prioritize stakeholders and competing issues?
- What is our goal and objective?
- How will we measure impact?
- Identify the primary issues you believe should be the focus of the effort, given the issues in the community.
- Generate a list of initial goals, that you can share with the group.
- Be able to describe how you will know you have been successful.
Review the Portland and Cambia, Louisville, and the Arizona End of Life Partnerships case studies in Module 4 for models and examples.
Stop the video and review the Chapter 1.1 Summary. Take time to answer the previous questions and begin to complete the listed Action Steps.
- Community engagement requires at least one or more individuals or organization that is willing to initiate and coordinate the effort.
- The leadership team should include stakeholders from the healthcare system, including a person with an advanced illness and/or a family caregiver.
- Initiatives in Portland, Louisville, and Arizona relied on a small group of people, who helped strategically guide the effort, and help it gain momentum.
- Both the Portland and Louisville efforts help illustrate that an initial community convening is a useful way to create awareness, gain alignment on crucial issues, and generate involvement.
- The Arizona effort demonstrates the value of having a strategic funder involved from the beginning.
- The leadership team should be asking key questions that focus on who needs to be involved, what objectives should guide the effort and how the effort will be funded and assessed, and the Arizona partnership exemplifies this.
- Throughout the entire process, it’s also important to consider the various roles and responsibilities that will need to be filled.
Chapter 1.2 - Goals, Focus, and Value Propositions
The next step in getting people and organizations to participate in your work is to develop an initial set of goals, determine a focus, and a value proposition.
- Validate that the group is action-oriented
- Provide a suggested map for their work
- Determines where and among whom you can have the greatest impact
- Value Proposition:
- Describes the value of the work
- Connects the work to interested stakeholders, including funders.
The process to develop the goals, focus and a value proposition begins with:
- Describing the group’s connection to the effort.
- Determining what the group members do professionally
- Understanding family connections to advanced illness
Our goals, focus, and value proposition are best described and developed by answering a series of questions:
- What we hope to achieve?
- What is the strategic focus and scope?
- What roles we want people to play?
- What are the ways to potentially tackle the opportunity?
As you develop your goals, an important question the leadership group needs to discuss is what it would like to accomplish over time. The following Reflection Questions will guide in this process.
- How you would want the future to be different?
- What you would like to accomplish to make this possible?
- What are your motivations and aspirations and those of the leadership team?
- Why is the effort important?
Ultimately, you will want to take each of the shared answers and develop a statement that describes what is driving the group's interest and the value of pursuing such an effort. Understanding what is driving the interest of your leadership team is also critical in narrowing and defining your focus.
In getting started, the leadership team created an initial list of goals. While this is a great starting point, the list that has been created is likely too narrow to allow for maximum impact and engagement from the community. As you go through the process described here, it is best to include a larger group.
This chapter will help you identify clear goals by introducing you to a series of tools:
- Present/Future Grid
- Logic Model
- Journey Map
An important tool in helping identify clear goals is Present/Future grid. It is useful in that it describes the Present situation for those with an advanced illness, and the ideal ‘Future,’ based on changes the group wishes to bring about.
The example shows a series of statements that describe the present. The statements begin with diagnosis and reflect not only facts but also the emotion that comes with unfulfilled expectations. With this as a starting point, it is useful to think about the stages the patient experiences and additional questions that they and their family may have. For instance, the patient may wonder if they should seek a second opinion and how that could affect their relationship with their doctor. The family may wonder if it would be worthwhile to reach out to a third party and get more information about their loved one's illness. Together, they may have even begun to wonder about experimental therapies and clinical trials. The patient could also be wondering about what their quality of life will be during treatment, and whether in the long run to have selected a less aggressive treatment. These only represent some of the questions one might ask.
Based on your experience, use the Present/Future template found in Module 4 to complete the Present side of the grid. Describe what the patient and their family go through in trying to make these decisions. This is important because you will want to think about each of the decisions someone with an advanced illness has to make. It's helpful to understand who else is experiencing this with them and to capture that in the margin. This will also help you later to identify all of the key stakeholders.
Once you have completed the Present side of the grid, generate a corresponding list describing what the Future should look like if patient care is high-quality, comprehensive, person and family-centered, and supported with aligned payment models. The Future statements are often just the reverse of those on the Present side.
Stop the video and take time to complete the following Present/Future Grid for your purposes.
Please find the Present/Future Grid on Pg. 17 of the full Community Engagement Toolkit Companion Guide. To download the guide as a Word document, please click here.
A Logic Model is another tool that can help determine your group's final set of goals. The Logic Model was first developed to help assess program effectiveness.15 It has four major components, as shown below:
Typically, the Logic Model is completed left to right and begins with the resources needed rather than goals. This approach limits your goals to only those things that you already have resources to achieve. Because you want to let your goals guide what you do, the model is flipped to begin with goals and end with resources. You will ultimately complete all four columns in the Logic Model as you move through the toolkit. The focus now is to use the list you generated in Chapter 1.1 and your Present/Future grid to describe what you want to accomplish and to create an initial list of goals. Your initial list of goals should focus on the next year.
Additional tools will be used to refine and evolve both our Present/Future grid and our initial set of goals. The C-TAC State Index will include a series of measures that describe the current situation. Here are some examples:
- Total Medicare spending
- Percent enrolled in hospice
- Hospital days per decedent in the last two years of life
- Hospice days per decedent
- Intensive care days per decedent
- Average co-payments per decedent in the previous two years of life
- Percent of hospitals with a palliative care program
- Home health agency visits per decedent
- Percent readmitted within 30 days of discharge
- CDC deaths at home
These measures, which rely on data from the Health and Retirement Study, are focused at the state level and can be used to assess the quality and comprehensiveness of the system of care. Data described in the state measures may not be available locally; however, they may suggest areas that should be examined more closely. With this in mind, it is useful to consider your initial list of goals and determine if any changes are necessary.
- Examine state measures and data for your state to see which of them should be ongoing areas of focus.
- Complete the outcomes column in your logic model.
Another important tool which can help you refine your goals and plan further is the journey map. The initial goal in using it here to understand the needs of the person with an advanced illness between the time of their diagnosis and death.
Step 1: Use the Present/Future grid and determine the significant decision points.
Step 2: Use the decision points to divide the journey into distinct chapters. The primary decision points that occur between the diagnosis of advanced illness and death, include:
- Developing a care plan
- Initial Treatment
- Treatment failures
- Palliative Care
- Forgoing further treatment
Within the journey, you will want to identify:
- Who is involved in the decision-making process?
- Where they found information to inform their choices?
- What are the needs of other decision makers and key questions they may raise?
Step 3: Use the Present/Future grid and other information you have generated to:
- Focus on one of the major decisions that have to be made.
- Create a brief vignette that describes:
- The person
- The decision
- The emotions
- The patient’ values and beliefs.
- Personalize it and include details that allow you to visualize the person and the situation
Edna is a 72-year-old woman, who has been diagnosed with stage 3 metastatic breast cancer. She is divorced but remains close to her ex-husband, who is also experiencing health issues. Their daughter and her family do all they can to provide support. Edna’s prognosis is not good, yet she remains active, in addition to following the directions provided by her doctor. She would like to know more about the resources that she has available to her and to join a support group, but she is not sure where to find them.
This is only representing one decision and one segment from the journey. You will want to generate similar vignettes for each of the major decision points. These will be used later in your outreach and communication strategies.
Stop the video and take time to complete the Journey Narrative. Combine these from the group to draft one representing the group as a whole.
- What are 4-5 key decision points for the person with an advanced illness?
- What they have gone through in trying to make these decisions?
- Who else has gone through the experience with them?
- What do you want to accomplish on their behalf?
Generate your patient journey with vignettes that reflect the major decision points faced by the patient and family. Write out a rough draft for your use in the space provided. Share your rough draft with others in the group.
Now, with your Journey Map complete, it's time to determine where you want to focus. While your Journey Map may describe the full-care continuum, you must decide if you are going to focus only on areas that you can impact or even limit your work to a specific set of stakeholders. Your focus may also be on specific geographic regions or timepoints in a person's illness. It is useful to consider what is manageable. As you determine your focus, you may need to modify your goals further.
You now have multiple tools that you can use, to help determine your group's goals. By this point, you have developed your Present/Future Grid, examined your state measures, and created a Journey Map to determine your focus. As you lay these out and look at them holistically, you may see common themes and trends emerge. Our goal, now, is to use the collected information you have generated, thus far, to populate the Logic Model with your goals.
- What are your motivations and aspirations?
- What will be the organization’s strategic focus?
- What roles do you want people to play?
Few donors are willing to invest time, energy, or money in any cause unless they have a clear understanding of the impact of their efforts. Developing a strong, convincing Value Proposition for your organization or cause is the first step to mapping out a successful development campaign.
A Value Proposition describes the exclusive, continuous value your donors will gain by supporting your cause. It answers the questions:
- What makes your cause unique and worthy of support?
- How is aligning with your group/coalition beneficial for patients and families?
- How is aligning with your group/coalition beneficial for the community?
- How is aligning with your group/coalition beneficial for your prospective donors (either individuals or businesses)?
A compelling Value Proposition:
- Sets your organization apart in a competitive market.
- Persuades prospective donors to invest in your worthy cause.
- Explains how prospective donor sponsorship:
- will make a difference
- bring a benefit
- create an opportunity that they won’t find elsewhere.
Know your target audience.
- Identify all possible sources of support, including key decision-makers.
- Perform careful research to create a detailed persona of your ideal supporters.
- Use interviews and surveys to identify your prospects’ demographics, motivations, and attitudes.
- Use this information to highlight the aspects of your organization that will most resonate with them.
Analyze your current situation.
Take a hard look at your group/coalition as it stands, and build a clear, objective picture of how well-positioned you are to achieve your goals. In this self-analysis, two tools are frequently used. The SWOT analysis, which is a framework to capture the group's current Strengths, Weaknesses, Opportunities, and Threats. In this application, it is recommended that you use OTSW (Opportunities, Threats, Strengths, and Weaknesses). Using OTSW forces you to look outside your group first, before looking inside. The use of a PESTLE analysis (Political, Economic, Social, Technological, Legal and Environmental) will help you analyze the external factor that can negatively impact on your group.
- Clearly define your group/coalition's values, mission, structure, and systems. Are they cohesive in their purpose and function? Do they send a message that's consistent with your cause?
- Pinpoint your group/coalition's strengths (what you do well) and weaknesses (what needs work or reevaluation).
- Identify any social, economic, or political factors that can affect your group/coalition, such as community demographics, legal guidelines, or controversial viewpoints.
- Compare and understand your group/coalition's position relative to competing non-profits:
- What sets your cause apart from that of other similarly minded organizations?
- How does their work affect their communities?
- What do their supporters like most about their work?
- How well do they communicate the benefits of their work to their supporters?
This position analysis sums up your group/coalition as it is, not as you want your audience to see it. Remember to be objective and factual when gathering your information. An accurate analysis – even if it's not a favorable one – will help you better focus on your distinctive value qualities.
Once you’ve determined where you want to go and how well-prepared you are to get there, you can shape a powerful message to attract the right supporters. Your Value Proposition should paint a clear, compelling picture of:
- Who you are?
- What significant work you are doing?
- Why prospective donors should support your cause?
- Speak to your target audience. Tailor your Value Proposition to resonate with the needs, perceptions, and attitudes of your potential donors.
- Focus on a return for investment. Develop a detailed cost analysis to show financial supporters exactly where their money goes, or to illustrate a significant social profit where the overall benefits outweigh the initial cost.
- Emphasize sustainable, continued value. Show donors that the benefits or rewards of supporting your cause go beyond their initial contribution. How do their contributions enhance their businesses or make a lasting difference in the community?
“Stand Up to Cancer was created to accelerate groundbreaking cancer research that will get promising new cancer treatments to patients quickly. We won’t stop until every cancer patient is a long-term cancer survivor.”
- Standup Up to Cancer works relentlessly to offer the newest, most effective, and most promising cancer treatments to patients quickly by bringing together the best minds to collaborate, innovate, and share cancer research.
“To transform the landscape of dementia forever. Until the day we find a cure, we will strive to create a society where those affected by dementia are supported and accepted, able to live in their community without fear or prejudice.”
- The Alzheimer Society believes passionately that life doesn't end when dementia begins.
Stop the video and take time to complete your Value Proposition. Write out a rough draft for your use. Again, bring all the group’s ideas together to create a strong Value Proposition.
Before You Meet
- Generate a list of individuals you would like to involve from the community A Community Contact template is available in Module 4 to help facilitate this step.
- Plan a community convening, where you can discuss the issue, the group’s interests, and preliminary things that you and the group hope to achieve. A Convening Checklist can be found in Module 4. It will ensure you have covered all of the key items in your planning. An important consideration in planning the convening is finding a location that is easy to get to, and that has convenient parking.
- When identifying a date, consider the following:
- Provide 6-8 weeks lead time. This is especially true if you are asking senior leaders in the community to be involved.
- The meeting should be planned for either first thing in the morning or at the end of the day. For healthcare providers, the end of the day is best, given their schedules.
Once you have the location, the date and the time, you will want to divide the list of desired attendees those you wish to involve amongst the leadership group and then reach out to each person. It is best that each of the leadership group have:
- The vital facts that can be shared by phone and in a follow-up email.
- What the effort is?
- Why it is needed?
- What they can contribute?
- Ask for them to invite another who they believe need to be involved.
During the Event
- Name tags and name tents should be available to help make it easier for those who have not yet met one another.
- Print the agenda and a copy of the goals to demonstrate that the effort is well organized.
- Collect contact information that can be shared with all of the other members.
- Limit introductions to name and organization to maximize your time.
- Share the goals of the coalition as well as the value proposition and get buy in from everyone who attends.
- Have flipcharts on hand to capture input.
- Generate the names of other people that should be involved.
- Determine key steps that should be taken and a timeline for doing so.
After the Event
Leadership Team members will want to quickly and intentionally follow-up with event participants.
- The group can send out handwritten “Thank You” cards to participants.
- A drafted email can be sent thanking participant for coming is also beneficial.
- Along with the email, you can attach the minutes from the event and participant contact information.
- Also include the date, time, and location of the group’s next convening.
Stop the video and review the Chapter 1.2 Summary. Take time to answer the previous questions and begin to complete the listed Action Steps.
- Getting people and organizations to participate in your work requires clear goals.
- Understanding what motivates each person’s interest and what they want to tackle over time is vital to the group’s success.4
- A Present/Future grid can be used to describe the present situation for those with an advanced illness, and how the future will look based on changes the group wishes to bring about.
- To start the process, you should identify the key decision points for a person with an advanced illness, after they have received a diagnosis.
- It is best to focus first on the present situation, and then look to refine it further. Beginning this process by looking at the soon to be released state index will help define the present situation.
- Use the statements on the Present side of the grid, to generate a corresponding list that describes what the ideal future should look like.
- The state measures give you the ability to see where your state performs poorly, as compared to national averages or to other states.
- While the data described in state measures not be available locally due to laws protecting privacy, the measures which raise concern could suggest areas which should be more closely examined locally.
- The goal is to use the information generated thus far to populate the logic model.
- For the purpose of illustration, a prioritized list of outcomes/impacts has been created, and this was informed by the state index, the Present/Future grid and the patient journey.