|
Ways to Conduct Community Outreach and Education
Get Started--Circle of Connections with Groups
Expand Your Organization's "Community"
Prioritize-Develop a Strategy and Philosophy
Use NCI Audiovisual Materials to Make Presentations
Distribute Materials
Write Articles for Local Newsletters and Web Sites
Host an Information Session/Community Forum--A Step-by-Step Planning Guide
Form an Advocacy Coalition
What You Can Do
Find opportunities and develop a strategy to speak about
clinical trials and/or:
Present NCI Clinical Trials Education Series slide programs or the awareness video
"Cancer Trials…Because Lives Depend on It" Distribute educational booklets and brochures from the
Clinical Trials Education Series:
Write articles for newsletters; post articles on Web
sites Host an information session or community forum on clinical
trials Form a clinical trial advocacy coalition
Why?
To provide information to people about cancer clinical
trials before they are faced with a cancer diagnosis To provide information about a specific cancer trial to
members of your community To provide people with the tools they need to find out
about trials in your community To educate interested members of the public about the
importance of cancer clinical trials To help debunk myths about clinical trials in the
community To develop a community strategy for clinical trial
outreach
Introduction
This section provides ideas for educating your community about
clinical trials. Whether you use personal contacts, community
organizations, or health-related organizations, remember that
combining strategies to get clinical trial messages out to your
community will make your outreach more successful. Using different
ways to get out critical messages about clinical trials increases the
chance that people in your community will absorb and remember
them.
Education and Outreach in Action
|
A chapter of a local cancer advocacy
organization had been trained about clinical trials.
Several members organized a community forum, inviting the
local researchers on a breast cancer prevention trial to
speak. They also invited several women who considered
participating in the trial. More than 75 people attended
the forum at the local YMCA.
|
|
A local cancer support group has a Web site and
a quarterly newsletter. The group's education committee
copied the articles included here and put them on its Web
site and in its newsletter. At the next meeting, the
group decided that all of its members should learn about
clinical trials.
|
Everyone has connections with different groups in his or her
community. Some people represent a specific organization. Others may
have connections with many different community groups.
As you think about the importance of clinical trials, think about
where and how you can become a clinical trial resource to these
groups. How can you help engage the organization in this issue?
In the circles below, write down at least five groups or
organizations you feel you can educate. The groups don't need to be
cancer-related, but should have a health focus. Keep these groups in
mind as you complete this section.
It is important to think broadly about other organizations with
which you can partner, whether you are part of a group or
organization that already has a clinical trial agenda, or if you want
your group to develop one.
A given geographical area includes many "communities." In the
following table, write down the organizations you identified on the
previous page.
Then, think about:
Reaching out to other groups in your community who are
likely to share clinical trial priorities Partnering with organizations with which you haven't yet
worked Contacting people who can put you in touch with key
leaders of these groups
The pages that follow will help you prioritize your outreach
efforts. It will be important to consider balancing your efforts
between groups that are easy to reach with others that will take more
effort.
Organization Contact Worksheet
|
Organization Type
|
Examples in My Community
|
Contact People in Community
|
|
Advocacy organizations
|
filler
|
filler
|
|
African American, Asian American, Latino, and Native
American-based organizations
|
filler
|
filler
|
|
Cancer-oriented nonprofit organizations
|
filler
|
filler
|
|
Cancer support groups
|
filler
|
filler
|
|
CDC Breast and Cervical Cancer Early Detection Program
coalition members (hint: check with your State health
department)
|
filler
|
filler
|
|
Chambers of commerce
|
filler
|
filler
|
|
Community cancer centers
|
filler
|
filler
|
|
Community health centers/public health clinics
|
filler
|
filler
|
|
Employee associations of large companies
|
filler
|
filler
|
|
Health care professional associations (doctors, nurses,
social workers, health educators, etc.)
|
filler
|
filler
|
|
Hospital education departments
|
filler
|
filler
|
|
Hospitals and research institutions
|
filler
|
filler
|
|
Housing organizations
|
filler
|
filler
|
|
Labor union locals
|
filler
|
filler
|
|
Lesbian/gay organizations
|
filler
|
filler
|
|
Men's organizations
|
filler
|
filler
|
|
Religious organizations/houses of worship
|
filler
|
filler
|
|
Senior citizens' organizations
|
filler
|
filler
|
|
Service organizations, such as Rotary, Lions, Kiwanis,
Jaycees, Junior League
|
filler
|
filler
|
|
State cancer control committees
|
filler
|
filler
|
|
Veterans' groups
|
filler
|
filler
|
|
Women's organizations
|
filler
|
filler
|
As you begin to consider different outreach and education
activities, you'll need to think strategically. Answering the
following questions can help ensure the success of your outreach and
education efforts.
Setting Objectives
Why should we get involved with clinical trial outreach and
education? What is the problem we want to address? (Be realistic!) What is the goal or expected outcome of our efforts?
Conducting Research
Is our clinical trial advocacy goal clear and realistically
attainable? Who are our primary allies? Have similar clinical trial education efforts been
attempted in the past, either in our community or elsewhere? What
lessons can be learned from them? What is the most compelling information that we can use to
make our case? (Think about your targets as you answer this
question.)
Considering "Targets"
In figuring out who your audience is, keep in mind that the
"general public" is not specific enough to be a target audience.
Ask:
Who are the key targets for our efforts? Are there key people who can help our efforts in reaching
these audiences? Leaders of professional organizations? Community
leaders? Who is our "community," and how can it be expanded? (Use
your worksheet.)
Considering a Philosophy
The questions that follow represent a simplified framework for
outreach and education efforts that could be large and complex. The
more complete your initial answers, the more likely it is that your
efforts will proceed smoothly and successfully. Consider the
following:
What are the most appropriate ways for our community to
learn about clinical trials? Do we want to simply inform people? Or do we want to
influence attitudes and change behavior? Which channels best fit our message about clinical
trials? What avenues are most likely to be credible to and
accessible by our community or our "targets"? Meetings? Trainings?
The media? Mail? Networks of contacts? Doctors' offices? Community
races? How can we complement existing cancer awareness activities,
such as national theme months (e.g., October is Breast Cancer
Awareness Month), local health fairs, and local hospital events, in
our efforts? Who are our best spokespeople? How can we use community
leaders in our outreach efforts? Does timing play an important role in some of our planned
activities? Will other pending issues claim our targets'
attention?
|
If you are not from the population(s) you seek to work
with, it is critical that you or your organization develop
partnerships with organizations from those communities.
Keep in mind that different communities find different
information sources credible and may respond better to
certain outreach strategies. Forming partnerships with other
organizations, rather than simply asking them to join
existing efforts, can help ensure that your educational and
outreach efforts will be successful.
|
You can present clear information about clinical trials to local
groups by using one of NCI's three slide programs in the Clinical Trials Education Series or the awareness
video, "Cancer Trials…Because Lives Depend on It." Most of these
materials are geared to the general public and feature interactive
discussion guides or talking points. By showing these materials at a
meeting or as part of a larger program, you can generate discussion
on the importance of clinical trials in your community.
Distributing materials is more than putting brochures out on a
display table. Consider the following ideas.
At Events or Meetings
At meetings in which everyone receives a packet of
material, target educational materials by inserting a cover letter
signed by an influential person in your community. At events, such as health fairs or lectures, place
materials out on a table. Offer candy or water and cups. Instead of
standing behind a table, think about standing in front, to make your
table look more inviting. Greet people warmly.
Through Doctors' Offices
Partnerships may be developed with health care providers to
educate their patients about clinical trials. Primary care providers
may be willing to discuss prevention trials with their healthy
patients. Some may be willing to send out materials to their
patients.
Through a Booth at Health Fairs or Events for Local Research Institution(s)
Often local institutions will be eager to host a booth to discuss
the clinical trials they offer. These booths can also enhance
community awareness around clinical trials.
Local organizations' Web sites, listservs, and newsletters can be
targeted and effective ways to reach community members. Use the
sample newsletter articles provided here to submit to organizational
newsletters and Web sites.
Your organizations' own publications are one likely avenue. Other
organizations may also be eager to publish information. Review each
organization's media to understand better what they are likely to
publish:
Who is the target audience? What types of articles are currently available? Who can help get this article published/online?
The Pros and Cons of Using Newsletters
Pros
Newsletters are tools for intra- or
interorganization communication. Newsletters help show how organized your group is and
help keep your members and colleagues current on your
activities. Newsletters have a very broad audience.
Cons
Newsletters take time, money, and skill to
produce. Newsletters are not well suited for publishing
late-breaking news.
Sample Newsletter Article 1
Newsletter
|
Clinical Trials: An Important Part of Our
Mission
[Insert how clinical trials relate to your
organization's mission, and why you are getting involved
with clinical trial outreach and education.]
Just as there are misconceptions about cancer screening
tests, there are misconceptions about clinical trials. When
people think about clinical trials, many imagine "guinea
pigs"-- participants getting inferior treatment or a sugar
pill (placebo) instead of actual medical treatment. Many
people also think that clinical trials are for only the
people who have no other treatment options available to
them. This article provides an overview of why clinical
trials are important, what they do, and why they are a
critical part of our work.
Why Clinical Trials Are Important
Clinical trials are a critical part of the research
process. Clinical trials help to translate basic scientific
research into new treatments. By evaluating the results of
these trials, researchers are finding better treatments for
cancer and ways to prevent cancer. The more people that
participate in clinical trials, the faster we can answer the
critical research questions that will lead us to better treatment
and prevention options for all cancers. Doctors will never
know the true effectiveness of a cancer treatment, or a way
to prevent cancer, unless they are able to involve more
people in clinical trials. And, research shows that few of
us really understand what clinical trials are.
Cancer Treatment Trials
Most cancer clinical trials are treatment studies. These
clinical trials involve people who have cancer. These
studies try to answer specific questions about and evaluate
the effectiveness of a new treatment or a new way of using
an old treatment. Treatment trials seek to find out:
- What new treatment approaches can help
people who have cancer?
- What is the most effective treatment for people
who have cancer?
In most cancer treatment trials, in which one treatment
is compared with another, people receive either the most
advanced and accepted treatment for the kind of cancer they
have-known as the "standard" treatment-or a new treatment
that has shown promise of being at least as beneficial as the
standard treatment, if not better. People in these trials do
not receive a placebo for their treatment.
In the past, clinical trials were sometimes seen as a
last resort for people who had no other treatment choices.
Today, many people with cancer, even those whose cancers
have not spread, get their first treatment in a clinical
trial. All people with cancer can benefit from learning
about all their treatment options, which include
participating in appropriate clinical trials.
Cancer Prevention Trials
Unlike treatment trials, cancer prevention clinical
trials are studies involving healthy people who are at high
risk for developing cancer. These studies try to answer
specific questions about and evaluate the effectiveness of
ways to reduce the risk of cancer. Prevention trials seek to
find out:
What approaches can prevent a specific type of cancer
from developing in people who have not previously had
cancer?
Risks and Benefits
Clinical trials have both benefits and risks--and they
are not the right option for everyone.
Possible Benefits
Possible Risks
New approaches may have side effects or
risks that are unknown. Even if a new treatment under study has
benefits, it may not work for every participant. Participants may have to pay for the costs of
travel, childcare, lost work hours, and meals.
[Discuss your community's education and outreach
efforts.]
How to Learn More about Clinical Trials
Call NCI's Cancer Information Service at
1-800-4-CANCER (1-800-422-6237) and ask for a customized search of the
PDQ database, which provides information on current studies.
Ask for the following pamphlets, which are available in
English and Spanish:
"Taking Part in Clinical Trials: What
Cancer Patients Need To Know"* "Taking Part in Clinical Trials: Cancer
Prevention Studies"* "If You Have Cancer... What You Should Know
about Clinical Trials"* (easy to read) "If You Have Cancer and Have Medicare...You Should Know About Clinical Trials"
Or you can visit the clinical trials area of the NCI Web
site at www.cancer.gov.
*Also available in Spanish
|
Sample Newsletter Article 2
Newsletter
|
Key Facts about Cancer Clinical Trials
Cancer clinical trials are research studies in which
people help doctors find ways to improve health and cancer
care. Each study tries to answer scientific questions and
find better ways to prevent, diagnose, or treat cancer.
These studies are the final step in the process of
developing new drugs and other means to fight disease.
Clinical trials are the way we make progress against
cancer.
Understanding that Cancer Affects All of Us
Cancer affects us all-whether we have it, care
about someone who does, or worry about getting it in the
future. Consider the impact of cancer in the United
States* in 2002:
Each year, about 555,550 people are expected
to die of cancer-more than 1,520 people a day. Cancer is the second leading cause of death, exceeded
only by heart disease. 1 of 4 deaths is from cancer. About 1,284,900 new cancer cases are expected to
be diagnosed each year. Research has shown that there are many differences
in who develops cancer and who dies from cancer among men
and women, and among people of different races, ethnicities,
and socioeconomic backgrounds. Differences in cancer
screening and treatment have also been documented for people
of different ages, incomes, educational, and racial/ethnic
backgrounds.
Understanding What Clinical Trials Do to Fight
Cancer
Clinical trials are a critical part of the
research process. Clinical trials help to translate basic
scientific research into practical treatments. By evaluating
the results of these trials, we can find better treatments
for cancer and ways to prevent cancer. Clinical trials contribute to knowledge and
progress against cancer. Many of today's most effective
cancer treatments are based on previous study results.
Because of progress made through clinical trials, many
people treated for cancer are now living longer. The more people that participate in clinical
trials, the faster we can answer the critical research
questions that will lead us to better treatment and
prevention options for all cancers. We will never know
the true effectiveness of a cancer treatment, or a way to
prevent cancer, unless we are able to involve more people in
clinical trials. In the past, clinical trials were sometimes seen
as a last resort for people who had no other treatment
choices. Today, many people with cancer, even those whose
cancers have not spread, get their first treatment in a
clinical trial.
Understanding How Few People with Cancer Take Part in
Clinical Trials
Enormous improvements in treating childhood
cancers have come about as the direct result of clinical
trials; more than 60 percent of U.S. children with cancer
participate in clinical trials. In 2000, more than 70
percent of children with cancer are alive 5 years after
diagnosis, compared with only 55 percent in the
mid-1970s. In contrast, only 3 percent of U.S. adults with
cancer participate in clinical trials-far fewer than the
number needed to answer the most pressing cancer questions
quickly. According to a survey in 2000, most people with cancer
were either unaware or unsure that participation in clinical
trials was an option for their treatment, and most of them
said they would have been willing to enroll had they known
it was possible.
How to Learn More about Clinical Trials
Call NCI's Cancer Information Service at
1-800-4-CANCER (1-800-422-6237) and ask for a customized search of the
PDQ database, which provides information on current studies.
Ask for the following pamphlets, which are available in
English and Spanish:
"Taking Part in Clinical Trials: What Cancer
Patients Need To Know"** "Taking Part in Clinical Trials: Cancer Prevention
Studies"** "If You Have Cancer... What You Should Know about
Clinical Trials"** (easy to read) "If You Have Cancer and Have Medicare...You Should Know About Clinical Trials"
Or you can visit the clinical trials area of the NCI Web
site at www.cancer.gov.
**Also available in Spanish
|
Many organizations choose to hold community events on clinical
trials, which can be an effective way to reach community members.
Careful planning is required to ensure your event is a success.
Step 1. Establish a Community Forum Organizing Committee, If You
Are Planning a Large Event
The organizing committee could include members from your education
committee or your board. You will need to determine a budget for the
project that includes costs of meeting room rental, printing flyers
or invitations, advertisements, and postage.
Involve other parts of your community-such as the leadership of
other nonprofit or advocacy organizations-in the planning
process.
The entire committee may need to meet only a few times to discuss
presentation goals and outreach strategies. A timeline and specific
"job responsibilities" can be discussed at the first meeting.
Step 2. To Focus Your Information Session, Clarify Your
Goals
It is important to answer the following question before beginning
to plan the event. Potential answers are provided here, but you
should answer this question for yourself: What is the goal in hosting
this forum?
You should aim for goals that are clearly expressible. Try not to
be overly ambitious for one community presentation. Getting community
leaders involved with clinical trials and educating community members
about clinical trials should be among your primary goals.
Specific goals of the meeting/forum might be to:
Provide information about a specific cancer trial
to members of your community. Develop a community strategy for clinical trial
outreach. Provide people with the tools they need to find out
about trials in your community. Educate the public about the importance of cancer
clinical trials. Help debunk myths about clinical trials. Make clinical trial information more accessible. Share information with local organizations, compare
strategies, and unify positions on common issues. Encourage people to inform others about clinical
trials. Begin to build links between local researchers with
community members.
Step 3. Determine Your Target Audience
Think about who and why. Develop a target audience list. Be sure
to involve community leaders.
Possible audiences include those listed in the section, "Expanding
Your Organization's Community."
|
For ideas in reaching cancer-related organizations in
your community, use the following sources from the National
Cancer Institute's Cancer Information Service:
|
Step 4. Choose an Interesting Theme with a Catchy Title
The theme should combine your organization's goals with what you
believe your target audience will find of interest. Some ideas are
given here.
General Information on Clinical Trials
What are clinical trials and why should we care about
them? How are cancer prevention clinical trials different from
other studies? What are the myths and facts about clinical trials? How are people protected in clinical trials? How does cancer research in our community address the
concerns of people living with the disease? How can someone decide whether to participate in a clinical
trial? What are the barriers to accessing clinical trials?
Specific Information on a Particular Trial
Provide information about a specific prevention or treatment trial
that may be having problems accruing patients. The presentation can
explain why it is important, including the risks and benefits. If
possible, give the locations of the trial sites in your area.
Community Advocacy for Clinical Trials
How can we help reduce the barriers to participation in
clinical trials in our community? How can we advocate for third-party payers to cover
clinical trial costs? How can we develop a community strategy for clinical trial
outreach? How can we make clinical trial information accessible to
those who need it in our community? How can we find ways to help people understand that
clinical trials can be a viable treatment option? How can people newly diagnosed with cancer learn about
clinical trials in the community?
Step 5. Choose the Forum Speaker(s), Format, and Date
Be sure to invite people who:
Can speak to lay audiences without using a lot of technical information Have a good rapport with the audience Live in the area Present information that people can use
|
Tip
When planning a special event, keep in mind that many
audiences are unfamiliar with scientific terms. Strive to
make information presented at your special event easy to
understand and creative.
|
For speaker ideas, contact principal investigators from the list
of cancer trials in your community. (For more
information, see Work with Researchers and Health Care Professionals.)
Consider inviting speakers who have actually participated in a trial. You can also contact your local cancer center,
hospital, or medical center or the Cancer Information Service for
help in finding speakers who will appeal to your audience.
Choose your date carefully. Make sure it is a time when most
people can attend and that it doesn't conflict with another large
community event or a holiday.
|
Tip
If your speakers are your big draw, you may want to offer
several dates to accommodate their schedules before the date
is confirmed.
|
Step 6. Decide on the Best Way to Inform the Target Audience
about the Event
Your message should reflect the theme you've chosen. The cost,
timing, and available person-power will affect the method you choose
to publicize your event. Consider the following methods:
Mailing invitations or flyers to organizational
mailing lists E-mailing event announcements to organizations and
individuals Posting on Web sites Advertising in local media, such as radio stations and
newspapers Distributing flyers or posters in the community Contacting cancer centers, hospitals, support groups,
and patient groups
Step 7. Obtain Educational Materials
At the event, provide participants with handouts on the benefits
of cancer research (e.g., handouts in this series). Encourage them to
share information with friends, relatives, and other people in their
lives.
Step 8. Arrange for a Location
Choose a location that is accessible by various modes of
transportation.
Step 9. Select an Event Format
Research has shown that adults strongly prefer interactive
delivery methods, which allow them to learn new information by:
Seeing Experiencing Discussing
Many scientists do not use these delivery methods, but you can
encourage their use to promote effective discussions in community
presentations. Remember that you want to advocate for people to take
action after they leave the forum.
Be creative in your format. Adults often gain the most out of
presentations by figuring out how they can apply the information in
their lives immediately. Possible formats include:
Single speaker format. An easy option is a
presentation that includes an expert speaking and answering
questions about cancer research. For example, a doctor, research
scientist, or outreach coordinator who is involved in a cancer
clinical trial could speak about the work he or she is doing in
the community. Panel discussion. A small group of experts (usually
between three and five) discuss a topic among themselves in front
of an audience. Panel participants don't make formal
presentations. They exchange ideas through conversation. Panels
can expose the audience to different points of view about a single
subject. Audience members ask questions or comment on the subject
after a panel discussion. Usually, a time limit is set for each
question and for the entire question-and-answer period. Cancer
trial panels might include:
Survivors who reflect the diversity of your
community who can discuss their decisions about trial
participation (survivors who are community leaders or otherwise
well known in your community might be of particular interest to
your target audience) Cancer researchers who can discuss their work Survivors and scientists who can discuss both the personal
decisions and the science behind trials Symposium. A small number of experts make short
presentations in succession. Presentations usually range from 5 to
15 minutes each. Open forum. Members of the audience may participate at
any time during the meeting. Colloquy. During a panel discussion, audience members
may be invited to comment or ask questions if a panel member or
the chair perceives a need to clarify points, raise an issue, or
ensure that a misperception doesn't stand. Any interruptions of
the panel discussion must focus on the point at hand. When the
matter has been resolved, the organized discussion among panel
members resumes. Buzz session. The audience is divided into groups of six
to eight people for discussion of questions posed by the leader.
One person from each group may be asked to summarize the group's
discussion and report to the entire audience. Audience reaction team. Three to five members of the
audience are pre-selected to respond to a presentation by offering
a brief summary and interpretation of information presented. This
discussion method can be used effectively in large-group settings
and when time is limited. Question period. Members of the audience have an
opportunity to ask questions of a presenter once the formal
presentation is completed. Usually, a time limit is set for each
question and for the entire question-and-answer period. Workshop. A small group of people (up to 25) with a
common interest meet to study, research, and discuss a specific
subject or to enhance their individual knowledge and
proficiency. Seminar. A group of people who are studying a specific
subject meet for a discussion led by a recognized authority.
|
Tip
No matter what format you choose, make sure you allow
plenty of time for questions and answers.
|
Working with Presenters
Preparation
Interview potential presenters in advance! You
need to assess a presenter's ability to discuss areas related to
clinical trials, and any personal experience he or she may have.
Ask potential presenters about their willingness to participate in
an event. Provide information about the date, time, and focus of
the event. Discuss any concerns about anonymity (e.g.,
picture-taking or media presence). Budget for honoraria and expenses. Whenever possible,
pay presenters an honorarium and offer food, mileage, parking, and
childcare reimbursement. If possible, plan to pay in cash the day
of the workshop (and get a signed receipt). Send a confirmation letter. Make sure it includes date,
time, and focus of the event, details about honorarium, travel to
the site, parking, and a telephone number of a contact person at
the training site. Call presenters 3 to 7 days before the event. Ask
whether they have questions. Discuss plans for focusing on
specific issues. Ask how they wish to be introduced. It may be
easiest for presenters to introduce themselves, so they can
disclose as much or as little identifying information as they
like. Obtain a facilitator/moderator. The facilitator's role
is critical to the event's success. A facilitator manages the
discussion. Presenters need support from the facilitator, who
should:
Assure them that they can refuse to respond to any
question for any reason
Monitor time carefully and gently, so everyone gets a
chance to speak
Help with questions and answers
Be available after the event to assist presenters and
offer feedback
Arrange to meet with all panelists before the
presentation. This will help alleviate their anxiety and provide a
chance to discuss any last-minute issues. Review the format for the panel. Look at time allowed
for each presentation and when/how questions will be taken from
the audience.
At the Event
Explain why you are holding a panel discussion. Hint:
Distribute an information sheet listing panelists and their
affiliations. Then you won't have to spend a lot of time on
introductions. Review the ground rules. Tell the audience how much time
each panelist will have to speak. Explain when audience members will
be able to ask questions or offer comments. Show courtesy and respect for differing points of view. Pay careful attention to respecting limits on time. Summarize in the last 5 minutes. This is important, even if
you have to say, "This discussion left many of us with more questions
than answers!"
Plan Your Community Events--A Sample Timeline
Whether you plan to host a forum or run a video presentation, this
checklist can help you plan.
6-8 Weeks in Advance
 Identify target audience
Identify and reserve site for meeting and ensure video equipment
is available-will it be a part of a regular organizational meeting, a
visit to someone's home, a special event?
4 Weeks in Advance
Refine target audience
Review audience needs
Develop and send e-mail/flyer
Order supplies, copies, and educational materials
Confirm site reservation, video equipment
2 Weeks in Advance
Check in with onsite coordinator on number of participants and
any changes anticipated
Get flip charts and markers (if needed)
Get nametags (if needed)
Organize handouts
Make sure any videotape works/CD-ROM works
1 Week in Advance
Prepare supplies and materials for presentation, place in
boxes
Day of Session
Arrive at least 30 minutes before scheduled start time
Check set-up and comfort of room
Place welcome and directional signs in the facility
Make sure you know how to work video equipment
1 Week after Session
Send thank-you letter to on-site coordinator, participants
A coalition is a group of organizations and individuals working
together for a common purpose. There are two types of coalitions or
partnerships:
Single-issue or event coalitions need to agree only on one
particular issue or event. The coalition dissolves when the issue is
resolved or the event takes place. Multi-issue coalitions focus on a set of related issues, such
as clinical trial access, health care for all, or quality of cancer
care. This more permanent type of coalition recognizes the value of
mobilizing together for action over a longer time. To be effective, a
multi-issue coalition should set a date for its work to be completed.
The coalition can always be reorganized if needed.
|
Why Form an Advocacy Coalition?
To build important links among community-based
organizations and clinical trial sites To share information with local organizations,
compare strategies, and unify positions on common issues To help:
Set priorities for action or funding Carry out an educational or outreach plan Broaden the development of new constituencies
|
The Value of a Coalition or Partnership
Coalition building is needed when one organization recognizes that
it alone does not have the capability or people-power to have a real
impact on an issue.
Clinical trial outreach is complex. Think of innovative ways to
reach underserved communities with clinical trial information. You
can be a catalyst for building important links among community-based
organizations and clinical trial sites.
Getting Started
Analyze Your Organization
Analyze your interests before asking other groups to join in your
efforts. Ask yourself:
What can be gained from joining with others? Will the advantages outweigh the disadvantages? How can we best communicate the demands of other groups
to our organization?
Forming an Advocacy Coalition--A Planning Guide
Step 1. Establish a Partnership Organizing Committee
The committee can be made up of leaders in your
organization. The committee manages the formation of the entire
partnership. Specific job responsibilities can be divided at the
first meeting.
Step 2. With the Group, Clarify Your Organization's Interest in
Developing a Community Partnership
Why do you want to advocate for access to clinical
trials? Why is it important? Which issues, questions, and behaviors around clinical
trials are of particular interest to you, and why? Do you need
more information on these topics? What don't you know about these issues, questions, and
behaviors around clinical trials? What questions do you need to
have answered? What outside resources can you tap to help you
understand the issues?
Identifying what you know about an issue also helps highlight what
you don't know-issues you can ask about when you get other
organizations involved.
Step 3. Identify Current Needs and Resources
When you start looking closely at clinical trial issues in your
community, you need detailed information about the needs of
individuals and the organizations that serve them, as well as the
resources that your community has available to solve those needs.
|
Needs can be defined as the gap between what a situation
is and what it should be. A need can be felt by an
individual, a group, or an entire community. It can be as
concrete as the need for more clinical trials or as abstract
as improved community understanding of clinical trials.
Examining needs can help you discover what is lacking, and
points you in the direction of future improvement.
|
Resources, or assets, can be used to improve quality of life. They
can be anything from people to places to organizations. Everyone is
an asset, and everyone has assets that can be used for community
building.
Identifying current needs and resources can help you:
Understand the environment where you'll be
working. Know how the community feels about an issue and what
members think needs to be done about it. Getting the opinions of
community members, identifying both the resources and limitations
of your area, will give you a holistic view of the issue. Make decisions about priorities for program or system
improvement. Once you assess the community, it is much easier to
make improvements that community members will notice and benefit
from.
This needs assessment process will be an ongoing part of forming
your coalition.
Step 4. Start with What You Know
After choosing an issue to focus on, you may find possible
solutions. Ask yourself:
What do we already know about the needs and
resources for clinical trials in our community? Has anyone else researched this topic in our community?
Can we rely on this other work to give us insight and answers? Are there experts in the community who can answer some
questions before we get started in forming the coalition? (Their
input may narrow the remaining questions you need to ask other
community members.)
Step 5. Identify the Key Organizations with Which You May Be
Working
Develop a list of organizations likely to want to participate in
the project. Be sure to include the institutions conducting clinical
research in your community. Possible participants may include those
listed on page 63.
Remember that this project presents an opportunity for you to
build important links among people with cancer, researchers, doctors,
and advocates.
Step 6. Determine What You Will Ask of Groups Who Join Your
Efforts
For example, each organization must be committed to:
Addressing clinical trial barriers in the
community Coordinating to solve the problem, not just to gain
public recognition The right of every other organization to be involved Open communication
Step 7. Write a Letter or E-mail Inviting Organizations to a
"Brainstorming" and Planning Session
The goal of this meeting is to figure out how community groups can
address local concerns associated with clinical trials. This
initiative may focus on collaboration among the groups. Keep in mind
that priorities may be different among the groups. This could be an
open meeting for discussion among interested parties. Publicize the
event through the media and at meetings.
Step 8. To Followup with All Participating Organizations,
Provide an Outline of Your Plans
Ongoing communication is critical to gaining community ownership
of this project.
Hold a Coalition Planning Meeting
Requirements for a Successful Meeting
Key requirements for a successful meeting include:
An accessible location and time A good facilitator, if possible from outside the
coalition, to help make sure all ideas are heard A good notetaker to record minutes, along with action
steps, and distribute them to attendees
The following are possible tasks for the first meeting.
Goal Setting
The meeting should have a goal. One example would be: "This
meeting will determine how community groups can collaborate on
addressing local concerns associated with clinical trials."
Team Building
Open the meeting with a team-building exercise. Pair people with
someone they don't know. Ask them to introduce themselves by telling
the other person about groups they belong to, as well as a skill or
talent they have. Ask people to introduce their partners by giving
their names, where they're from, groups they belong to, and a skill
or talent. Comment on the number of groups mentioned, the various
skills named, and how this is a beginning to building an effective
coalition/partnership.
Information Overview
Be prepared to:
Share clinical trials educational materials Discuss your goal in getting involved with advocacy Ask people to think about ways to spread the word
Brainstorming
In a brainstorming session, participants share their ideas or
suggestions for solving a problem. Discussion of each point occurs
after all ideas have been expressed. The atmosphere should be open
and encouraging.
Use a newsprint pad and marker and ask for a volunteer "recorder."
In the groups:
Discuss community perspectives on barriers to clinical trials.
How do they differ from the information presented? What other
concerns do members of the community have? Focus discussion on
barriers in the community, in institutions, and among potential
participants. Next, discuss possible solutions. Explain that this is a
participatory goal-setting process. Discuss potential projects to let
more people know about clinical trials.
|
Tip
You can use a buzz session in a coalition-building
meeting as well as for a community meeting. If you use a
buzz session instead of brainstorming, you may want to have
the groups use worksheets to discuss the issues. The
worksheets will help to determine community priorities for
this project.
|
Mission Statement
Meeting attendees should work to develop a mission statement for
the partnership. Examples of mission statements are:
To determine the issues of importance related to
clinical trials in our community, in order to develop a
community-based advocacy initiative To work together to reduce the barriers to clinical
trials inour community
The facilitator may need to further develop the statement and send
it to attendees for comment at the second meeting.
Finding Other Partners
Brainstorm to decide on other groups to invite to the next
meeting. List the following organization types and examples on
separate sheets of a newsprint pad:
When inviting groups to join the coalition, define the issue in a
way that appeals to their self-interest.
Followup Steps
Participants should resolve the following before the meeting
ends:
How to continue communication among coalition
members Who will facilitate future meetings (The facilitator
should invite other organizations to join the coalition's next
meeting. The group can elect someone to this position.) Who will coordinate an agenda for the next meeting
(Committee assignments are one way to develop different parts of
the agenda.) How additional input will be incorporated in the coalition's plans
|
To help you plan conducting community outreach and
education, see the
Plan for Action.
|
Back to Top
< Previous Section | Next Section > |
