1. Communicating Science Thomas Workman, Ph.D. American Institutes for Research AIR American institutes for research logo Asterisk after silde indcates to reference slide notes

2. A MERICAN I NSTITUTES FOR R ESEARCH A Call to Communicate Clearly 2*

3. A MERICAN I NSTITUTES FOR R ESEARCH Illustrating the Issue Geneticists and cell biologists have exploited a neurologically impaired “pale and trembling” mouse strain, in conjunction with new genomic technologies and information from the known mouse and human chromosomal DNA sequences, to rapidly identify a mutation that causes a subtype of the Charcot-Marie-Tooth neurological disorder that affects one in 2,500 people in the United States. Knowledge of the specific gene defect will enable development of a DNA test to confirm the diagnosis in patients and predict risk for family members. The disorder presents with progressive arm and leg pain that that begins in early adulthood and leads to difficulty walking and manipulating objects. The mutation in the FIG4 gene leads to a deficiency of a signaling phosphatase enzyme that is important in maintaining neurological connections in specific regions of the brain as well as in peripheral sensory and motor nerves. 3

4. A MERICAN I NSTITUTES FOR R ESEARCH Translating Science: Inverting the Scientific Method Scientific Communication: ↓Research Need ↓Research questions and hypotheses ↓Methods of study ↓Findings ↓Discussion/Implications ↓Bibliography of sources Lay Communication: What Who When Where How Why 4*

5. A MERICAN I NSTITUTES FOR R ESEARCH Steps to Effective Communication 1.Identifying the Audience and Message Context 2.Forming the Message for each audience 3.Translating Scientific Terms and Concepts into Plain Language 4.Delivering Messages in Assessable Formats 5

6. A MERICAN I NSTITUTES FOR R ESEARCH Step 1: Identifying the Audience Who is my audience? What does my audience already know about the subject? What does my audience need to know? What questions will my audience have? What's the best outcome for the field? What do I need to say to get this outcome? What's the best outcome for the audience? What do I need to say to get this outcome? 6

7. A MERICAN I NSTITUTES FOR R ESEARCH Audiences for Scientific Messages Patients, family, and caregivers Clinicians and practitioners Jurors/Legal Advisors Health Care Administrators Payers/Third Party Insurers Policymakers Researchers 7

8. A MERICAN I NSTITUTES FOR R ESEARCH Contexts: Identifying How Information is Used Deciding about the treatment or management of conditions Deciding whether to participate in a study Making legal decisions based on scientific evidence Creating benefit design or formularies based on scientific evidence Creating policies or procedures based on scientific evidence Determining funding priorities for future research 8

9. A MERICAN I NSTITUTES FOR R ESEARCH Step 2: Identifying the Message Effective messages: Focus on audience need rather than on content. Are action-oriented. Provide only the essential information to meet the audience need. Are designed for elaboration when needed. 9

10. A MERICAN I NSTITUTES FOR R ESEARCH Illustrating the Issue: What’s the Message? 10 Geneticists and cell biologists have exploited a neurologically impaired “pale and trembling” mouse strain, in conjunction with new genomic technologies and information from the known mouse and human chromosomal DNA sequences, to rapidly identify a mutation that causes a subtype of the Charcot-Marie-Tooth neurological disorder that affects one in 2,500 people in the United States. Knowledge of the specific gene defect will enable development of a DNA test to confirm the diagnosis in patients and predict risk for family members. The disorder presents with progressive arm and leg pain that that begins in early adulthood and leads to difficulty walking and manipulating objects. The mutation in the FIG4 gene leads to a deficiency of a signaling phosphatase enzyme that is important in maintaining neurological connections in specific regions of the brain as well as in peripheral sensory and motor nerves.

11. A MERICAN I NSTITUTES FOR R ESEARCH Who needs to know/how will they use this knowledge: There is a new diagnostic approach for Charcot-Marie- Tooth neurological disorder. The Charcot-Marie-Tooth disorder affects 1 in 2500 people in the United States. Charcot-Marie-Tooth disorder causes progressive arm and leg pain that that begins in early adulthood and leads to difficulty walking and manipulating objects. How genetic testing identifies Charcot-Marie-Tooth disorder. 11

12. A MERICAN I NSTITUTES FOR R ESEARCH Translating Science Into Plain Language Simple words Short sentences Active verb tense Replace or define technical terms Provide essential information only Use analogies and metaphors to describe complex processes 12

13. A MERICAN I NSTITUTES FOR R ESEARCH Messages from Our Example for Lay Audiences Charcot-Marie-Tooth disorder is a common illness that affects the nervous system. The disorder is passed from the parent to the child through birth, even if the parent does not have the disorder. This happens to 1 in 2,500 people in the United States. Symptoms start in early adulthood. Patients with Charcot-Marie-Tooth disorder feel arm and leg pain that gets worse over time. Over time, the disorder can make walking and manipulating objects difficult. 13

14. A MERICAN I NSTITUTES FOR R ESEARCH More Messages from Our Example for Lay Audiences Until recently, scientists did not know how to find out if someone has Charcot-Marie-Tooth disorder. Researchers have now found the specific cause of the disorder by studying defective genes (DNA) of mice and humans. This discovery can be used to create a DNA test that can: o Help someone know if they have this disorder o Help families know the risk of passing the disorder on to their children 14

15. A MERICAN I NSTITUTES FOR R ESEARCH Challenges to Scientists Letting go of the details Feeling comfortable with the non-specificity of simple terms and descriptions Building on basic messages with growing details for those able to or desiring additional information 15

16. A MERICAN I NSTITUTES FOR R ESEARCH Getting the Message Out Using audience-based information sources Connecting interested audiences back to more information 16

17. Questions? tworkman@air.org 17