>> GOOD EVENING, EMP.
AFTER THIS AFTERNOON AND CONCEPT CLEARANCE, I THINK
THAT THIS BRIEFING ABOUT A WORKSHOP THAT WE HELD IS
EXTREMELY IMPORTANT AND VALUE.
IN NOVEMBER OF LAST YEAR, NRI HELD A WORKSHOP
TO DISCUSS THE RESEARCH AND PROGRAMATIC
NEEDS TO ADDRESS THE LAY PUBLIC'S GENOMIC LITERACY
AND THE GOAL WAS TO ASSESS THE PUBLIC'S CURRENT STATE
OF GENOMIC LITERACY AND TO EXPLORE RESEARCH AND
PROGRAMATIC OPPORTUNITIES.
WE IDENTIFIED FOUR SPECIFIC OBJECTIVES WHAT DO WE KNOW
NOW ABOUT THE PUBLIC'S CURRENT KNOWLEDGE OF GENETICS
IN GENOMIC TO MAKE HEALTHCARE DECISIONS AND
WHAT RECOMMENDATIONS SHOULD WE GIVE THE SCIENTIFIC
COMMUNITY REGARDING RESEARCH OPPORTUNITIES FOR STUDYING
THE GENOMIC LITERACY OF THE PUBLIC?
AND WHAT KIND OF EDUCATIONAL PROGRAMS WILL IMPROVE THE
EFFECTIVENESS OF HEALTHCARE?
AND FINALLY, HOW CAN GOVERNMENT AGENCIES ENGAGE
DIVERSE COMMUNITIES IN MEANINGFUL WAYS TO INCREASE
GENETIC LITERACY.
THERE ARE A NUMBER OF FEDERAL AGENCIES AND A
NUMBER OF INSTITUTES THAT PARTICIPATED IN THIS
WORKSHOP.
I JUST WANT TO HIGHLIGHT HERE.
I RESTRUCTURED THE WORK SHOP TO FOCUS ON THREE DIFFERENT
DOMAINS.
ONE, GENOMIC HEALTH LITERACY, SECOND, SCIENCE LITERACY,
AND THIRD, HOW GENOMIC LIT RAS WRITE IS INFORMED.
BY WHAT THE MEDIA DOES AND HOW BOTH CAN ENHANCE
LITERACY OR POTENTIALLY CREATING SOME OF THE
DIFFICULTIES IN COMMUNICATING INFORMATION
AND STRONG SCIENTIFIC KNOWLEDGE.
SO I WANT TO SHARE THIS WITH YOU BECAUSE THESE WERE
DEVELOPED BY ANY COLLEAGUES THAT IDENTIFY WHAT WAS OUR
ORIGINAL CHARGE AND IT HIGHLIGHTS HERE WHAT WE SAW.
BUT WHAT WAS THE MOST IMPORTANT FOR THE REPORT AND
YOU WILL SEE HERE THAT HEALTH ISSUES REALLY CAME
OUT OF THE WORKSHOP AS THE NUMBER ONE PRIORITY AREA
WITH REGARDS TO LITERACY.
SO WE WENT IN WITH A MUCH MORE AGNOSTIC VIEW AND
FOCUSED ON SCIENCE EDUCATION AND SCIENCE LITERACY OR ON
HEALTH.
BUT EXPERTS IDENTIFIED HEALTH LITERACY RELATED TO
GENOMEICS AS THE MOST IMPORTANT.
I AM GOING TO BRIEFLY RUN THROUGH SOME OF THE
RECOMMENDATION THAT'S CAME FROM THE WORKSHOP AND HERE
THERE IS JUST A BRIEFING FOR YOU AND STEPS WE ARE
RECOMMENDING TO MOVE FORWARD.
THESE THE RECOMMENDATIONS.
THERE IS THE NEED TO INTEGRATE PATIENT LITERACY
IN THE GENOMIC MEDICINE AND THE ABILITY TO INTEGRATE IN
A CURRENT ACTIVITY.
PROMOTE RESEARCH ON BEST EDUCATION PRACTICES, CREATE
A REPOSITORY OF ROBUST ASSESSMENTS.
ONE OF THE ISSUES THERE IS NO ONE PLACE TO GO AND
HIGH-QUALITY MEASURES THAT I CAN USE TO STUDY TO BETTER
UNDERSTAND AND ASSESS LITERACY.
BOTH FROM THE PERSPECTIVE OF THE SKPRIRT PATIENT AND HOW
THAT INFORMATION IS USED AND THE IMPORTANCE WITH REGARDS
TO UNDERSTANDING OF GENETIC RISKS.
AND ENCOURAGE NEW RESEARCH PARTNERSHIPS WITH STATE
GOVERNMENTS, COMMUNITY-BASED ORGANIZATIONS AND PRIVATE
COMPANIES.
SEVERAL OF STATE DEPARTMENT TO PUBLIC HEALTH AND THEY
IDENTIFIED SOME ACTIVITIES GOING ON AT THE STATE LEVEL
TO DO IMPORTANT RESEARCH TO MOVE FORWARD ON
UNDERSTANDING PUBLIC'S LITERACY.
WE LOOK AT ISSUES OF FORMAL AND INFORMAL EDUCATION AND A
NUMBER OF RECOMMENDATIONS CAME OUT OF THAT.
ONE WAS TO DEVELOP RELIABLE MEASURES TO ASSESS THE
UNDERSTANDING OF GENOMEICS AND GENETICS AND IDENTIFY
MISCONCEPTIONS.
STUDIES TO EDUCATE THE PUBLIC AND KEY ISSUE OF HOW
CAN WE USE DIFFERENT KINDS OF ENVIRONMENT TO HELP
EDUCATE THE PUBLIC AND PROMOTE RESEARCH IN PUBLIC
GENOMIC LITERACY.
THIS WAS A MAJOR RECOMMENDATION THAT CAME OUT
OF THE COMMUNITY-BASED ORGANIZATIONS THAT
PARTICIPATED IN THE STUDY AND A NUMBER OF RESEARCHERS.
IN THE AREA OF GENOMIC LITERACY IN THE MEDIA, THERE
WERE THREE AREAS THAT WERE HIGHLIGHTED.
ONE STUDY COMMUNICATION OF HEALTH MESSAGES.
SO ACTUALLY STUDYING HOW THE INFORMATION IS COMMUNICATEED.
AND NEW MEDIA AND TECHNOLOGY.
THAT WE ARE NOW IN A TIME WHERE WE'RE REALLY MOVING TO
USE NEW TECHNOLOGIES TO HELP TO EDUCATE AND INFORM THE
PUBLIC AND THE NEED TO STUDY THOSE ISSUES.
AND FINALLY THIS ISSUE OF STUDYING THE LANGUAGE OF
GENOMEICS.
HOW PEOPLE USE DIFFERENT CONCEPTS AND I HAVE THIS
EXAMPLE HERE ON HOW ONE PERSON MAY INTERPRET WHAT
THAT MEANS MAY BE DIFFERENT FROM ANOTHER PERSON AND HOW
WE UNDERSTAND AND INTERPRET VARIOUS CONCEPTS SO NOW THE
PUBLIC SEES IN THE LAY LITERATURE ON A DAILY BASIS.
SO SOME GENERAL RECOMMENDATIONS WERE SUPPORT
RESEARCH AND DEFINE A SET OF KNOWLEDGE NEEDS FOR THE
PUBLIC.
AND ALSO TO CONDUCT A NATIONAL SURVEY OF PUBLIC
UNDERSTANDING OF GENETICS AND GENOMEICS AND THIS CAN
BE DONE IN A FREE STANDING NATIONAL SURVEY OR IT COULD
ADD A SET OF QUESTIONS TO A CURRENT NATIONAL SURVEY
THAT'S CONDUCTED.
AND TO MONITOR THIS OVER A PERIOD OF TIME SO YOU COULD
SEE DOING THIS EVERY YEAR WITH A GROUP OF U.S. PUBLIC
TO DETERMINE HOW THERE HAVE BEEN CHANGES WITH REGARDS TO
GENETIC AND GENOMIC UNDERSTANDING AND LITERACY.
CURRENTLY THERE IS WORK GOING ON IN THE UK SIMILAR
TO THIS AND A NEED FOR A PARALLEL EFFORT IN THE
UNITED STATES.
AND ESTABLISHING INTERNET CLEARINGHOUSE OF TOOLS,
SURVEYS, SUMMARIES HIGHLIGHTED
BEFORE.
BUT TO PLACE THIS RESOURCE WHERE PEOPLE CAN GO TO GET
HIGH-QUALITY INFORMATION.
AND IT WAS A STRONG ENCOURAGEMENT AS A LOW
HANGING FRUIT TO BRING REALLY A LARGER GROUP OF
PEOPLE TOGETHER WHO ARE INTERESTED IN ISSUES OF
HEALTH AND SCIENCE AND GENOMIC LITERACY AT A
MEETING TO PRESENT DATA FROM STUDIES AS WELL AS TO HELP
ENCOURAGE AND FACILITATE NEW WORK.
THIS IS THE FIRST STEP IS TO GET YOUR INPUT WITH REGARDS
TO THIS AREA AND THE IMPORTANCE OF THIS AREA TO
THE INSTITUTE AND WHERE WE MAY WANT TO TAKE THIS FROM
THE PERSPECTIVE OF FOLLOWUP WITH REGARD TO THE WORK SHOP.
DISSEMINATION OF THE FINDINGS TO THE SCIENTIFIC
COMMUNITY.
WE ARE IN THE PROCESS OF DEVELOPING A MEETING REPORT
TO BE PUBLISHED SO THAT THE BROADER SCIENTIFIC COMMUNITY
WILL HAVE ACCESS TO THIS.
AND HOPEFULLY ENCOURAGE OTHER AGENCIES AND
INDIVIDUAL RESEARCHERS TO DO WORK IN THIS AREA.
AND THE FOCUS IS TO DEVELOP NEW EDUCATION COMMUNITY
INVOLVEMENT ACTIVITIES RELATED TO THIS.
WITHIN THE OFFICE OF POLICY COMMUNICATIONS AND EDUCATION,
THE EDUCATION COMMUNITY INVOLVEMENT BRANCH IS
INVOLVED IN A NUMBER OF DIFFERENT EDUCATIONAL
PROGRAMS, BUT REALLY STARTING TO FOCUS
SPECIFICALLY ON THIS SPECIFIC AREA BASED ON THE
RECOMMENDATIONS THAT WE RECEIVED.
AND FINALLY, TO INTEGRATE RESEARCH OPPORTUNITIES INTO
OUR BASE AND P.A.
WITHIN THE INSTITUTE.
SO THINKING ABOUT A NUMBER OF THE DIFFERENT CONCEPT
CLEARANCE ACTIVITIES THIS AFTERNOON, HOW POTENTIALLY
WE COULD INTEGRATE ISSUES AROUND GENOMIC LITERACY SO
THE PUBLIC DIRECTLY TO REALLY TO TAKE ADVANTAGE OF
THEM.
SO WITH THAT, I WANT TO ACKNOWLEDGE ALL THE VIMGDS
WHO WERE INVOLVED IN THIS PROCESS.
WE HAD AN EXTERNAL PLANNING COMMITTEE AND YOU SEE THEIR
NAMES HERE, AS WELL AS NHGRI, INTERNAL PLANNING COMMITTEE
AND KEYNOTE SPEAKERS.
I WANT TO HIGHLIGHT ONE PERSON WHO HAPPENS TO BE IN
THE AUDIENCE AND THAT'S DR.
SHIRLEY WHO DID A LOT OF THE HARD AND DIFFICULT WORK
TO MAKE SURE THAT THIS WORKSHOP WAS VERY
SUCCESSFUL.
SO WITH THAT, I WILL TAKE QUESTIONS.
TEN MINUTES OR LESS?
QUESTIONS.
YES.
>> A YES AND A COMMENT.
BACK WHETHER TEN YEARS AGO WASN'T THERE MONEY SET ASIDE
IN LC FOR AN EDUCATIONAL EFFORT 20 YEARS AGO AND
WE GOT RID OF IT OR SOMETHING SPGS
>> MY COLLEAGUES IN THE LC PROGRAM ARE IN THE AUDIENCE.
NOW IT'S BEEN ABOUT SEVEN YEARS AGO A DECISION WAS
MADE BY THE LC ADVISORY GROUP AT THAT TIME TO STOP
DOING PROGRAMATIC WORK.
THEY CONTINUE TO DO EDUCATION RESEARCH, HOWEVER,
THE NUMBER OF GRANTS ACTUALLY ACCRUED IN THAT
AREA HAS BEEN VERY LIMITED.
BUT NOT TOT PROGRAMATIC AND CREATE EDUCATIONAL
MATERIALS.
JOY?
>> IN 2003, HE GUESS IT WAS, WE GOT A RECOMMENDATION --
MAYBE IT WAS 2005, TO DISCONTINUE R 25 PROGRAM,
WHICH ACTUALLY DEVELOPED LARGELY DEVELOPED CURRICULUM
FOR GENETIC EDUCATION.
WHAT WE HAVE DONE AND CONTINUE TO DO IS WE DO A
LOT OF LITERACY EDUCATION EFFORTS AS PART OF A LOT OF
OUR CLINICAL INTEGRATION PROJECTS WHERE THEY'RE
ACTUALLY LOOKING AT HOW PATIENTS, DOCTORS, FAMILIES
ABSORB INFORMATION, WHAT ARE THE BEST APPROACHES TO
EXPLAINING INFORMATION TO THEM AND HOW THEY RESPOND TO
THAT INFORMATION?
. >> I THINK AN RFA IN THIS
AREA WOULD BE FANTASTIC.
ONE THING I WOULD RECOMMEND IS THERE HAS BEEN A LOT OF
EFFORT THAT THE IDEA OF A CLEARINGHOUSE I THINK IS
REALLY IMPORTANT BECAUSE THERE HAS BAIN LOT OF EFFORT
IN INDIVIDUAL PROJECTS TO DO WORK LIKE THIS, LIKE WE DID
A CONSENT FORM FOR SAMPLE DONATION YEARS AGO AND
MOOREHEAD TO CREATE THAT WE DID EXTENSIVE RESEARCH ABOUT
WHAT PEOPLE UNDERSTOOD IN TERMS OF DESCRIBING GENETICS
AND SAMPLING DONATION OF SAMPLES AND PICTURES AND
THINGS.
I AM SURE THERE IS A LOT OF WORK OUT THERE THAT HAS BEEN
CON WOULD BE USEFUL FOR PEOPLE.
JUST A THOUGHT AS YOU PUT THIS TOGETHER.
I THINK IT WOULD BE GREAT.
>> THANK YOU.
>> ALL RIGHT.
I CAN'T HELP BUT POINT OUT THE FACT THAT THIS WHOLE
DISCUSSION NOW IS A CONFLUENCE OF EDUCATION
EFFORT AND WHAT THE LC PROGRAM DID PREVIOUSLY GOES
BACK TO THE QUESTION ASKED DURING THE QUESTION OF
REORGANIZATION.
IS THIS COMING OUT OF WHAT EVENTUALLY I HOPE WILL BE
THE DIVISION OF POLICY COMMUNICATIONS AND EDUCATION,
AND CLEARLY THERE SHOULD BE DIVISION OF GENOMICS SOCIETY
AND REVISITING THINGS AND DECIDING WHAT KINDS '--
MAKES SENSE TO ME.
ANYTHING ELSE?
ALL RIGHT.
>> THANK YOU.