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Cancer Clinical Trials: A Resource Guide for Outreach, Education, and Advocacy



Introduction






Strategies for Outreach and Education






Ways to Educate Yourself






Ways to Educate Others, One-on-One






Ways to Conduct Community Outreach and Education






Ways to Work with the Media






Ways to Work with Hospitals, etc.






Appendix



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Ways to Work with the Media

Work with Mass Media--Goals, Timing, and Process
Develop a Media Campaign
Use Media Tools

What You Can Do

  • Develop a media campaign

  • Contact local media outlets about running a story related to clinical trials

  • Write a letter to the editor or an op-ed piece for your local newspaper

Why?

  • To educate the public about clinical trials

  • To encourage people to find out about trials

  • To encourage local doctors to refer people to trials

Introduction

Media advocacy is the use of television, radio, newspapers, magazines, or other media to help promote your mission. The media are a primary source of health information. Using the media can help your organization:

  • Change the way community members look at clinical trials

  • Create a reliable, consistent stream of publicity for your organization's activities

  • Motivate community members and policymakers to get involved and learn more about clinical trials

Keep in mind that newspapers, television stations, and radio stations have different audiences. Messages that work for one audience may not work for another.

Education and Outreach in Action

A woman with colon cancer was very active in the local PTA in her community. Many of the parents were surprised when she told them about her decision to join a clinical trial. One of the parents said, "I didn't know a lot about clinical trials, but I saw how much the trial is helping our friend. I figured that we had to let other people know about it." The PTA approached the local community newspaper to do a story on her experience in the trial; which resulted in a five-part series.

1. Work with Mass Media-Goals, Timing, and Process

Goals

Goals in using the mass media include:

  • Informing the public about issues related to clinical trials in your community

  • Recasting clinical trial barriers as concerns that affect everyone, not just individuals

  • Encouraging people to find out more about clinical trials and to get involved

Timing

Good times to focus extra energy on the media include when:

  • Announcing a new project (for example, a new clinical trial outreach plan)

  • You have information that can be tied to a community event

  • The public or government officials are debating or considering laws or activities that affect clinical trials

The Process

There are three different activities in media advocacy: agenda setting, shaping the debate, and advancing a policy.

Agenda setting is what you accomplish when you influence:

  1. What the media cover (media agenda)

  2. What people talk about (public agenda)

  3. How policymakers think about or act upon issues during legislative sessions or in committee (policy or political agenda)

Agenda setting helps you make connections with the media and their audiences. It also sets the stage for your next trick, shaping the debate. To set an agenda:

  • Let the media and public know your concerns

  • Get the public talking about what is important to you

  • Generate some sort of action (e.g., aim to influence policy or get more people involved)

Shaping the debate is trying to change the way people talk about clinical trials. The media often give tidbits of information about clinical trial problems and then provide quick-fix solutions. Traditionally, the media tell an audience:

  • "This is what the problem is"-providing information about a problem

  • "This is the solution"-usually summed up in a quick health message such as, "Just say no."

Once you help to shape the way clinical trials are reported by the media, then the community can work for better access to clinical trials. Advancing a policy is a way to use the media to inform policymakers about an issue. Media coverage created by advocates can educate policymakers before they take action.

2. Develop a Media Campaign

A media advocacy campaign is similar to a political campaign in that you need to plan it carefully-identifying specific strategies and tools to use-before taking any action. You need to understand how you want the media to help you advance your goals.

Use the following steps to set up a media campaign:

  1. Prepare your organization or your members. You will need to designate a spokesperson to work with the media. Spokespeople need to be prepared to speak with media representatives, using extra caution with words and language that might be manipulated.

  2. Select your objectives. Ask yourself why you need to set up a media campaign. Is a campaign the best way to meet your needs? What are you going to use the media for? Do you want to inform the people of important facts or do you want to get them involved? Do you want to change policies or create new ones? Do you want to build support for your goals and objectives?

  3. Identify your target audience. Anyone involved in health issues can make a difference. Because people who live in one community can have many different opinions and preferences, you can't reach everyone with just one message. You will need to narrow your audience and decide who you want to target:

    • Policymakers?

    • People who are facing a decision about treatment or prevention options?

    • Groups who are undecided about supporting clinical trials?

    • The general public, who doesn't know about clinical trials?

  4. Make a plan. Because media advocacy activities consume time and money, it's important to put your best foot forward when you begin. Carefully consider when to start your campaign, who you will contact first, what issues you will tackle, and how you will present them. What media would you like to use? Television, print media (such as magazines, newspapers, and newsletters), radio, or billboards?

  5. Review your goals. Even though you put a lot of thought into your media advocacy plan, be prepared to modify your goals. Remember, the news can change quickly, and you need to be ready to react to an opportunity, even one that doesn't fall under your organization's typical scope of activities. Are your goals feasible?

  6. Keep your ear to the ground. Ask yourself what people talk about, in your community and nationwide. What can polls and surveys tell you about the hot topics? How much do people know about your issues? What kinds of misconceptions or prejudices can you find in public opinion?

Tips

  • Review local publications to understand better what information each is likely to publish. Who is the target audience? What types of articles are currently available?

  • Find out who reports on health and community issues and go directly to him or her.

  • Remember that reporters are always looking for good news stories and you can serve as a resource to them. Developing media opportunities is a challenging job, but with the right preparation, you can soon become an expert.

  • Always be ready to arrange an interview with a health care provider and a person with cancer. Factual stories need a human-interest angle.

  • Pitch stories in relation to health awareness months.

  • Ask producers of radio call-in shows to feature clinical trials on one of their programs. Offer to provide background information, sample questions and answers, and people to interview.

  • Use local organizations' media (e.g., newsletters, Web sites, and listservs).

3. Use Media Tools

Press Releases

Press releases are one-page write-ups about your organization's news. To be effective, they should be used sparingly. Press releases are best used to announce an event, a coalition meeting, or other strategy your group is employing to spread the word about clinical trials.

Typically, press releases are faxed to the appropriate reporter or editor.

The press release should be double-spaced and no more than a page long.

Sample Press Release Format

Contact-
Be sure to include a telephone number

National Institutes of Health

EMBARGOED FOR RELEASE
1 p.m. EDT
Friday, November 01, 2002
NCI Press Office
(301) 496-6641

Headline-
When possible include link to local event

National Cancer Institute Hosts Lecture, "Poor Whites and Health"

1st paragraph-
Interesting lead sentence, general description of event, date, or place

J. Wayne Flynt, Ph.D., distinguished professor, Auburn University, Auburn, Ala., will discuss the impoverishment of whites in America and the effect of poverty on their medical care.

2nd and succeeding paragraphs-
More description and background. When possible, obtain a direct quote, local interest angle.

Flynt received his Ph.D. from Florida State University in 1965, specializing in Southern political history. His research interests subsequently turned to poverty and religion. He has lectured at universities across America and abroad.

Flynt is a community activist, serving on the American Cancer Society's Committee for the Socioeconomically Disadvantaged. He is co-founder of the Alabama Poverty Project and Sowing Seeds of Hope, an initiative to overcome poverty in Perry County, Ala.

Flynt is the author of 10 books, two of which have been nominated for Pulitzer Prizes. In 2003-2004 he will serve as president of the Southern Historical Association, the largest professional organization devoted to the study of Southern history and culture.

This lecture is the second in a series presented by the National Cancer Institute's Center to Reduce Cancer Health Disparities. This lecture series explores issues related to health disparities and the unequal burden of disease in American society.

When: Tuesday, Nov. 5, 2002, 2 p.m.
Where: the lecture will take place in Masur Auditorium at the Warren G. Magnuson Clinical Center on the National Institutes of Health (NIH) campus in Bethesda, MD.

For more information provide a Web address or telephone number

If you are interested in attending this lecture or require further information, please contact (301) 496-6641.

Most media outlets are deluged with press releases. Consider alternatives to the press release format:

  • Fact sheets-who, what, when, where, and why

  • Position statements-a brief explanation of an issue and why your group cares about it

Pros

Most nonprofit organizations rely on the news media to reach the largest audience possible. Press releases:

  • Provide an excellent way to tip off journalists and editors to your organization's news or upcoming activities

  • Can be produced quickly in the event of breaking news

  • Allow you to frame the issues

  • Are easily distributed by mail, fax, or e-mail

  • Encourage credible, objective journalists to report on your activities

Cons

Press releases require skill to do well. Writing and distributing a press release isn't enough. You have to work hard to form good relationships with the media to make journalists more receptive to your press releases and other efforts. And once you establish ties, you have to work hard to maintain them. Remember that the attention span of the news media is generally very short and that your story has to compete with many others for attention.

Public Service Announcements

Public service announcements (PSAs) may be used to solicit membership or to provide general information about your group and its mission to spread the word about clinical trials. They are more likely to be broadcast or printed if they announce a meeting or public event.

Tip

Many media outlets run community calendar segments during newsbreaks or talk programs. Call outlets and ask to insert an item in their community calendar segments. They will either take down the information over the phone or ask that you provide it in writing.

When distributing your PSA, include a letter that sums up your group's mission and why your PSA is important to your community. You can also provide the public service director at the news outlet with a press kit that includes more extensive information on your group.

Radio

Radio PSAs should be submitted in a written script format or on a professionally-produced tape. Written copies are often less expensive and more effective, because they will be read by the radio announcer, who is an experienced and familiar voice to the public ear.

Television

Keep in mind that television production can be very expensive and requires experienced technicians and extensive camera equipment. Don't forget about public access cable-more and more people are using it. Using public access, you are most likely to get your message broadcast without changes-a rare case where you have complete control over your message.

Pros

PSAs:

  • Can give you free air time

  • Can help long-range advocacy goals by helping to maintain name recognition for your organization

  • Are an easy way to spread information

Cons

You can't control the placement of your PSA, and competition for "good airspace" can be fierce. In addition, PSAs:

  • Are labor intensive

  • Offer less flexibility than paid advertisements (radio and television stations may pick and choose which PSAs they wish to use)

  • Don't allow you to react quickly to breaking news because they are hard to revise

Sample PSA Format

Usually it is best to simply provide the information for a PSA to a media outlet, in a clearly readable format. In many cases a radio or TV station will run a PSA exactly as you submit it. So, before you fill in the blanks in the following sample, ask someone at the station which format is best.

Time of spot

30-second spot

Title of PSA

Sam Donaldson on Melanoma for NCI

Interesting lead sentence

General description of topic or event or who is invited. You may want to include a sentence on history or a local interest angle.

HI, I'M SAM DONALDSON. YOU MAY KNOW ME AS A NEWS ANCHOR, BUT I'M ALSO A MELANOMA SURVIVOR. MELANOMA -- THE MOST SERIOUS TYPE OF SKIN CANCER -- CAN BE CURABLE IF CAUGHT AND TREATED EARLY. SO YOU AND YOUR DOCTOR SHOULD EXAMINE YOUR SKIN REGULARLY. OFTEN, THE FIRST SIGN OF MELANOMA IS A CHANGE IN SIZE, SHAPE, COLOR OR FEEL OF AN EXISTING MOLE.

Final sentence-
Where to go for more information.

FOR MORE INFORMATION, CALL THE NATIONAL CANCER INSTITUTE'S CANCER INFORMATION SERVICE AT 1-800-4-CANCER OR VISIT NCI'S WEB SITE AT CANCER-DOT-GOV.

Tip

Remember to Keep It Short and Simple!

Letters to the Editor

The philosophy behind your local newspapers' letters-to-the-editor pages can differ dramatically. The key variable is the size of the paper's circulation.

Some editors of the letters page see it as a community bulletin board where all sorts of opinions ought to be posted. This wide-open policy typically is found at smaller papers, where they might be struggling to fill the space they've allotted for letters. These papers are a perfect opportunity for those interested in clinical trial outreach and education.

In the midsize to large suburban and urban daily newspaper, hundreds of letters may come in each day. For the editors of larger papers, relevance is the key consideration. They want to print feedback/criticism/praise for stories and opinion columns that have appeared in their paper quite recently.

When you have evaluated the newspaper you are writing to and have an idea of its circulation, you should begin to outline your topic. First and foremost, know what you're writing about. Don't criticize a newspaper's overall coverage of an issue unless you have truly read every inch of coverage. Don't embarrass yourself and your organization by claiming that a newspaper doesn't cover cancer issues, for example, only to be presented with 30 clips of stories printed over the past 2 years. If you're going to use the media, you must first be a smart, consistent consumer of their products.

Keeping this in mind, it is best to focus your piece on a particular story the paper has published:

  • Always quote the headline and date in your first or second sentence.

  • Stick to the facts and keep it dignified.

  • Keep it brief, for the reader's sake. Four to six paragraphs is the rule, with paragraphs consisting of only one or two sentences each (generally 250-500 words max).

  • If you can't make your point within these constraints, consider writing a full-blown opinion column for the page, often called the op-ed because it is published opposite the newspaper's editorials. An op-ed column should consist of no more than 15 paragraphs, and 10 is a better length (500-800 words). Op-eds should be signed by a prominent person in your community.

If possible, fax your letter or column to the editorial page. You should identify a specific person to whom your letter should be sent. The letter will get there more quickly, and 70 percent of editors say they prefer faxes. You must sign your letter and include a daytime telephone number.

If you have not seen your letter printed within a few days, followup to inquire, politely. The answers you get will help you the next time you write. Remember that no newspaper is obligated to print your letter, but newspaper editors consider themselves obligated to fairly and accurately present all sides of the issues. Use this ethic to your advantage.

To help you plan ways to work with the media, see the Plan for Action.

Sample Letter to the Editor

1st paragraph-
Begin by connecting to a timely event, previous article, or statement. When possible, tie national events into relevant stories or information about your community.

Dear Editor:

Your most recent coverage of cancer in our community [April 11-Cancer Clinical Trials: False Promises] was an earnest attempt to address the issues surrounding this topic. However, some important facts about clinical trials were lost in the process. As [insert what you are], I share the authors' concern about the potential abuses in the clinical trials system and appreciate their commitment to bring attention to this problem. But this year alone, it is estimated that 553,400 people will die of cancer in the United States-more than 1,500 people a day. By providing a one-sided and sensationalistic view of a highly complex subject, you do a great disservice to the important contributions of thousands of hard-working and ethical researchers, as well as to clinical trial participants.

2nd paragraph-
Make your point upfront.

The public's confidence in clinical research is seriously shaken by stories like yours that report inadequacies in participant protection without discussing the benefits of clinical trials. Considering the thousands of people who take part in clinical trials each year, breaches in protection are rare.

3rd paragraph-
Use facts to support your point. Make sure you get your facts from a reliable source.

It is important to note that the number of studies executed efficiently and ethically far outweighs these tragedies resulting from clinical trials. We will never be able to answer the most pressing questions about the causes of and treatments for cancer without the scientific evidence produced through well-designed and ethically executed clinical trials. Your readers should know that many Federal regulations enforce participant protection rules. In addition, in 2000, the U.S. Department of Health and Human Services took additional steps to strengthen government oversight of medical research and to reinforce clinical researchers' responsibility to follow federal guidelines.

4th paragraph-
Be persuasive; appeal to readers' sense of justice, decency, or empathy to strengthen your argument. Don't be afraid to use a personal example as a way to support your point of view.

Only 3 percent of adults with cancer currently participate in clinical trials. How will we ever answer the most pressing questions about the causes of and treatments for cancer without the scientific evidence produced through well-designed and ethically executed clinical trials?

5th and 6th paragraphs-
Say what readers should do, for your organization, for your community, in support of clinical trials.

I firmly believe that people with cancer should have access to the best treatments and be given the best possible chance for survival. Clinical trials ultimately offer the best hope for many people, and all must be offered the opportunity to participate. Participant protection must be enforced in clinical research, and all participants need to be appraised of the risks and benefits of participating through existing informed consent laws.

We all need to know the facts about clinical trials. To learn more about clinical trials, call NCI's Cancer Information Service at 1-800-4-CANCER or visit the NCI Web site, www.cancer.gov.

Sincerely,

 

 

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