A Weekly Advocacy Message from Mary Woolley: Ex-communication
Dear Research Advocate:
Last Sunday, the National Academy of Sciences presented its prestigious Public Welfare Medal to Alan Alda, actor and science communicator, who joins an esteemed group of Medal awardees, including Bill and Melinda Gates and Research!America’s Chair, former Congressman John Porter. In Alda’s acceptance remarks he described a scenario in which members of Congress passed notes to each other during testimony by scientists: “Do you get this? What are they talking about?” In short, a failure of what he called ‘relatability.’ He went on to say that scientists are, all too often, not just failing to communicate with non-scientists, but ‘ex-communicating’ them from science. The stakes are high. Alda challenged all present to get engaged; to learn new ways to communicate. He has risen to the challenge himself with his Center for Communication Science at Stony Brook University. A master storyteller, Alda reminded me of former Congressman George Brown, who told it like it was (and too often still is) when scientists talk to non-scientists-- ships passing in the night. Brown is remembered fondly as “the Congressman who loved science.” Alda does, too. Let’s learn from him.
When it comes to telling a compelling story, heroes like Sarah Gray and Alison Moschitta remind us of the many reasons why we must never let our commitment to research waiver. In a TED talk featured this week, Sarah Gray tells the powerful story of her experience donating her son’s tissue to medical research, and how her subsequent relationships with the researchers who received the donation brought her family hope during a time of grieving. Alison Moschitta suffers from juvenile arthritis and despite the difficulties caused by this painful chronic disease, she and her father are devoted advocates for research- and what better time to celebrate them than during Arthritis Awareness Month? Read Alison’s story in our new Arthritis Fact Sheet.
We’ve known for awhile that the construct of patients as a passive recipient at the end of the innovation pipeline is outmoded, but no one has systematically scoped the value of incorporating the patient-perspective. Margaret Anderson and Kimberly McCleary, of FasterCures, provide a welcome comprehensive review of the landscape of patient engagement. One thing is certain-- patients are a critical stakeholder whose perspectives and experiences must be incorporated into the medical innovation pipeline if we are to fully realize the potential to save and improve lives.
In conjunction with World Asthma Day, GSK released a report on Tuesday sharing data from a national survey of patients with uncontrolled asthma. Results show 78% of patients report that their symptoms interfere with their sleep, and 67% report that their symptoms interfere with their enjoyment of life. Learn more about the personal, economic and societal burden of asthma, as well as the promise of research to reduce that burden, in our Asthma Fact Sheet; and register for the research continuum briefing on asthma and allergies next Friday, May 13 at noon.
We are so overexposed to the presidentials this election year that it’s a relief to go into the home stretch of the primaries. But at the same time, it is truly unsettling to have heard so little about what candidates for the presidency -- as well as those determined to become members of Congress -- would do, if elected, to speed medical progress, a priority we know resonates with the public. We are reaching out to candidates to get their perspective. Please join us in our Campaign for Cures voter education initiative to help elevate research for health this election season. Make sure to follow us on Facebook and Twitter to get all the updates!