Reusable materials and curriculum for the AllTrials Train-the-Trainer Series on Clinical Trial Transparency Communication and Advocacy at NYU in 2017.
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Participants will be able to
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Gather and understand the essential information on clinical trial transparency issues
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Identify their motivation for communication
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Locate and understand their audiences
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Create compelling and targeted messages for their audiences
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Plan effective communication and advocacy campaigns
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Organize, run, and evaluate your own meetings, presentations, and workshops
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[Session 1 Slidedeck](https://docs.google.com/a/senseaboutscienceusa.org/presentation/d/1-IuhW1-DP3USX6REXf5V54zX3OhAhkmSjb-Xgpk0DXA/edit?usp=sharing)
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Series Objectives
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Code of Conduct
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Overview of Session 1
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Why are we running this workshop? (10 mins)
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Start with the why: why do you care? Why are you talking to me? Source: http://www.ted.com/talks/simon_sinek_how_great_leaders_inspire_action?language=en
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Story of Why I am organizing this series?
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Tell your story of self. Example below:
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Believe that scientific research is the best way for humans to create knowledge, and evidence built through good research is the best way for us to solve our biggest challenges, such as disease and poverty.
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When I learned that there were some issues in research that were preventing important knowledge from getting to those who need it, I thought that I should see what I can do to help fix those issues.
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I was fortunate enough to participate in a train-the-trainer workshop by Software Carpentry and then advocacy training from OpenCon. What these communities taught me is that ordinary people like me, shy people, people who have never advocated for anything before, and people who are not experts, can successfully advocate for issues they care about.
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At OpenCon, the conference organizers scheduled meetings for us with lawmakers on Capitol Hill. I was scheduled to meet with a Senator and advocate for open access to scientific research. I was terrified, felt like an imposter, and was sure the Senator would ask me a question I didn’t know the answer to and I would ruin the whole meeting. We had a plan, however. The plan was to just tell the Senator why we care about access to research. So when the Senator asked why I was here, I said "I am a researcher, and it is important to me that I am always doing the best research I can. In order to do that, I need to have access to all previous research in my field." The Senator smiled, nodded his head, and it was clear that our stories resonated with him. He asked if we had some literature his staff could review, and we gave him a folder of information, shook his hand, and left. I had survived, I didn’t ruin the meeting, and my story helped to motivate this Senator to learn more about my issue.
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What I learned is that the most effective way to communicate is not to share facts and plans with the people that can make change, but to tell them a story about why you care about the issue. Telling the story of why you want to talk to them allows you to express your values to your audience, values that can resonate with them, and can motivate them to care about your issue as well.
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Learning how to tell my own Story of Why open research is important to me has allowed me to communicate and advocate in open science, even though I was not an expert. And I know that there are others like me that are just a few practice conversations away from becoming effective advocates themselves - which is what this workshop aims to do.
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You don’t need to be an expert to be a good advocate, but you need to know the essential facts and you need to know where to find reliable answers to questions
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Start with your "Why?" (25-30 mins)
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As we discuss the essential information about open clinical research, think about:
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How does this issue relate to your experiences?
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How does this issue relate to your values
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What worries you about these issues?
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How do you fit into this picture?
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Take notes as we review the essential information. This is also the first step towards telling your Story of Why.
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Toolkit: Gather essential information and identify your motivation
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The essential information
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What is the issue?
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Without access to information from all trials, we do not able to make the best decisions:
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Who uses trials?
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Physicians
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Patients
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Policy makers
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Researchers
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Patients volunteer to enroll in these trials in order to improve treatments, assuming the results will be available to those who need them
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Much of research is paid for by the public, with the assumption that the public will benefit from using the results of the research
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Publication bias game
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What happens when we only publish negative findings?
- Write the answer on the screen
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Positive findings are twice as likely to be made publicly available as negative findings (citation)
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What happens when we only publish the positive findings?
- Write the answer on the screen
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What happens when we publish all the trials?
- Write the answer on the screen
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Identify your motivation (20 mins)
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Does this matter to you?
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Researchers and research support - does this matter to you? Why?
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Medical students - does this matter to you? Why?
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Students - does this matter to you? Why?
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Patients - does this matter to you? Why?
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Homework: Mapping the whys
- Who else might be motivated by the same things as you on this issue?
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Series Objectives
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Code of Conduct
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Overview of Session 2
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Homework from Session 1
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Identify an audience that is motivated by the same thing as one of us
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Review what we care about
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What other audience might care about the same thing as one of us?
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Why?
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Locate your audiences
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Toolkit: Locate and understand your audiences
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Create an Audience Map
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Identify stakeholder groups
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Rank them by priority
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Assess their current engagement with your issue
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Identify what motivates them
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Identify what information they might need
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Activity: Fill in the gaps in this Audience Map https://docs.google.com/spreadsheets/d/16jZifh0jhVtDlAT02EkGm6XzxrZY1mhiPzGF1svhbak/edit?usp=sharing
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Understand your audiences
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Take their temperature
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Learn more about them
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What do they know already?
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Attitudes and beliefs
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Concerns and interests
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Motivations
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How?
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Formally (survey, structured interview, focus group)
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Informally (coffee chat, phone call)
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Create an Audience Profile
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Use what your learned to start targeting your message
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Create an Audience Profile for a typical audience member
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Update it as you learn more about your audience
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Document typical concerns, misconceptions, and questions
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Activity: Create a new Audience Profile https://docs.google.com/document/d/1OEJ9bE7531kLkF4xIAg1_ZmmFE4IAmuf7NF8wdqTdrQ/edit?usp=sharing
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Homework
- Pick an Audience Profile and write a 3 sentence pitch for that audience about why they should care about clinical trial transparency.
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Series Objectives
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Code of Conduct
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Overview of Session 3
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Dr. Jennifer Miller (20 mins, 5 mins questions)
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Why is transparency important to her?
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What is she doing now?
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What questions do people have for her when she presents?
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What are the barriers to changing people’s minds?
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Homework from Session 2 (25 mins)
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Practice targeting your message
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Audience Profile Pitches
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Who is your audience?
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What is your 3 sentence pitch?
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What do they care about?
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What do they need to know?
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What questions do you anticipate from them?
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Match resources to audiences (10 mins)
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Give each participant a role: researcher, medical student, physician, patient, dean. They will reflect on how someone in that role would respond to how clinical trial transparency information is presented to them:
- AllTrials Video (5 mins)
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Homework: Group feedback on video and presentation
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What is missing?
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What questions would you ask in that role?
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What would you change about the video for your audience?
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Organize, run, and evaluate your own meetings, presentations, and workshops
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Series Objectives
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Code of Conduct
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Overview of Session 4
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Homework from Session 3 (15 mins)
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Group feedback on video and presentation
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What is missing?
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What questions would you ask in that role?
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What would you change about the video for your audience?
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Plan your communication and advocacy campaign
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Define your immediate objectives.
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Identify the available channels of communication in your institution.
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Matching the target audiences you have identified with clear, compelling messages that inform them, address their needs and concerns, with the most relevant communication channels.
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Working with those responsible for delivering related messages can make your advocacy more effective.
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Communication tips:
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Involve the right people – identify and map your audiences and stakeholders, their interests, concerns and needs.
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Enlist top level support – when advocating open access, show these changes are sponsored by the Vice-Chancellor, PVCs, deans and research directors and senior researchers.
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Promote readiness and responsibility – communicate regularly with clear ‘calls to action’.
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Improve compliance and support – assess and communicate impacts and monitor success.
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Communicate and advocate
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Communicate regularly and consistently using a variety of appropriate channels to ensure you reach all the target audiences you hope to contact.
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Test your messages on colleagues or associates who are unfamiliar with clinical trial transparency with the aim of clarifying your message based on what they don’t understand.
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You must be honest and genuine in how you communicate. This strengthens trust, builds relationships, and improves chances of audiences being receptive and supportive. The information in the messages you send of the things you say face-to-face should be concrete not abstract.
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Face-to-face contact, emails, video, and other methods
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All surveys of internal communication continue to confirm that face-to-face contact with stakeholders is still the way most people prefer to receive information.
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Leaders and managers (heads of research groups, PIs, and supervisors) are vital channels for strategic communication.
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Social media is a valuable means of staying up-to-date with and sharing latest developments, participating in or leading a community of interest, and communicating successes.
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Email is one of the next most popular channels for receiving and sharing information.
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Monitor, measure, and evaluate success
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Gather feedback after communication to evaluate how well it went.
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Online quizzes and surveys can quickly check understanding and changing opinions about transparency with your audience.
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Metrics on registration and reporting at your institution might help you understand if you are making a difference in the long-term.
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When you have success, be sure to share it with everyone! For example, Open Access Success Stories.
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5-minutes with the Dean
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Organize, prepare for, and conduct a meeting with a decision-maker on a topic in clinical research
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Prepare a compelling story for an audience
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Always start with the Why? Why do you care about the issue? Why are you talking to this audience about the issue - why should they care? Start with the "I have a dream" speech, not the “I have some facts” speech, or even the “I have a plan” speech
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Start with a positive, succinct, definition of clinical trial transparency that is appropriate for that audience.
- "Clinical trial transparency is when important information for clinical trial stakeholders (patients, physicians, policy-makers, etc.) is made public by registering all clinical trials and reporting all clinical trial results."
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Continue with any existing policies that might be relevant to your audience.
- "The FDA and the NIH now have policies that require the registration and reporting of clinical trials on ClinicalTrials.gov."
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Appeal to your Audience’s Interests
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Form messages that speak to stakeholders’ needs whenever possible.
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List and anticipate concerns.
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Take into account their any interests relating to their discipline.
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Show them how you can support them in their action, engagement, or compliance.
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Outline some of the advantages for them
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Draft FAQs that relate to their likely concerns.
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Repurpose and share resources
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Whenever possible, avoid remaking resources if they already exist.
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Provide a list of resources that are relevant to your audience.
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Adapt and reframe reusable resources, if needed.
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