AFTERNOON EVERYONE. I WOULD
LIKE TO BEGIN BY CALLING THE
SELECT COMMITTEE ABOUT
TECHNOLOGY INFORMATIONAL
HEARING TO ORDER. THIS GUY WAS
A LITTLE SMALLER THAN WHAT I'M
USED TO ON THE ON THE ROSTER
BUT- IT'LL IT'LL DO I THINK.
THIS IS THE BUSY SEASON IN THIS
BUILDING AS YOU MIGHT IMAGINE.
ELSEWHERE MIGHT BE A SUMMER
SLOWDOWN BUT THIS IS OUR BUSY
TIME OF THE YEAR SO MEMBERS
HAVE TO BE IN MULTIPLE
LOCATIONS AT THE SAME TIME. I
AM PLEASED THAT WE'RE JOINED BY
OUR BUDGET SHARE MY ASSEMBLY
CALI FEEL TANG WHO JOINED AS I
KNOW THAT DOCTOR WOULD CHAIRMAN
OF OUR HEALTH COMMITTEE WILL BE
COMING BY AS WELL AS ADDITIONAL
MEMBERS OF OUR SELECT COMMITTEE
AS THE AFTERNOON. ROLLS ALONG
SO I WANT TO WELCOME ALL OF
YOU. AT TO THIS HEARING. I AM
HONORED. TO CHAIR THE SELECT
COMMITTEE ON BIOTECHNOLOGY OUR
OVER ARCHING GOAL WITH THIS
COMMITTEE FOR THOSE OF YOU WHO
ARE FAMILIAR. WITH THIS BODY.
IS TO ENSURE THAT THE
LEGISLATURE IS UP TO DATE A
WELL INFORMED ABOUT THE BIOTECH
INDUSTRY IN OUR STATE. THE
SELECT COMMITTEE ABOUT
TECHNOLOGY FOCUSES ON THREE.
KEY ASPECTS OF THE BIOTECH
ECOSYSTEM IN OUR STATE. OUR
RESEARCH AND DEVELOPMENT
INFRASTRUCTURE. IMPORTANT LEGAL
AND REGULATORY ISSUES IMPACTING
THE INDUSTRY. AND HOW THIS
INDUSTRY IS SUPPORTING OUR
WORKFORCE DEVELOPMENT EFFORTS.
TODAY'S HEARING IS VERY
APPROPRIATE THAT IN PROVIDING
US AN OPPORTUNITY TO HEAR FROM
THE ADMINISTRATION. AND KEY
STAKEHOLDERS WHO ARE WORKING TO
ADVANCE. PRECISION MEDICINE
HERE IN THE STATE OF
CALIFORNIA. PRECISION MEDICINE
ENVISIONS A SYSTEM OF HEALTH
CARE. THAT IS HIGHLY
COORDINATED AND TECHNOLOGICALLY
SOPHISTICATED. IN WHICH
PATIENTS PROVIDERS AND
RESEARCHERS CAN ACCESS THE BEST
RESEARCH TRIALS AND FINDINGS.
AND THE BEST DATA AND TOOLS. TO
DRIVE DECISION MAKING. IT IS
DRIVEN BY ADVANCES IN
TECHNOLOGY AND THE INCEASING
AVAILABILITY. AND GRANULARITY
OF DATA. THE CALIFORNIA
INITIATIVE TO ADVANCE PRECISION
MEDICINE WAS LAUNCHED IN TWENTY
FIFTEEN THE STATE INITIALLY
PROVIDED THREE MILLION DOLLARS
TO CREATE A FIRST IN THE NATION
STATEWIDE PRECISION MEDICINE
PROGRAM. SINCE THAT TIME IT IS
GROWN INTO A FIFTY THREE
MILLION DOLLARS STATEWIDE
INITIATIVE WITH THE SUPPORT OF
KEY PARTNERS INCLUDING U. C. S.
F. INITIATIVE SUPPORTS PATIENT
FOCUSED. DEMONSTRATION PROJECTS
AND CONNECTS HEALTH AND
MEDICINE STAKEHOLDERS FROM
ACROSS THE STATE. IN OCTOBER
TWENTY SEVENTEEN THEN GOVERNOR
JERRY BROWN ANNOUNCED THE
FORMATION OF THE PRECISION
MEDICINE ADVISORY COMMITTEE THE
ADVISORY COMMITTEE WAS CHARGED
WITH PROVIDING RECOMMENDATIONS
TO ESTABLISH CALIFORNIA AS A
NATIONAL LEADER IN PRECISION
MEDICINE AND HEALTH THROUGH THE
CREATION OF STATEWIDE POLICIES.
THE PMAC DELIVERED ITS ACTION
PLAN FOR CALIFORNIA TO THE
GOVERNOR IN DECEMBER OF LAST
YEAR. TODAY'S HEARING PROVIDES
A FORUM FOR THE LEGISLATURE TO
RECEIVE UPDATES ON PROJECT THAT
CI A P. M. HAS FUNDED. AND TO
HEAR RECOMMENDATIONS FROM THE
ADVISORY COMMITTEE AND OTHER
STAKEHOLDERS WE HAVE THREE
AGENDA ITEMS TODAY WHICH WE
WILL WHICH WILL BE PRESENTED BY
TWO OR MORE EXPERTS PER AGENDA
ITEM. COMMITTEE MEMBERS LOVE AN
OPPORTUNITY TO ASK QUESTIONS OF
THE PRESENTERS AFTER EACH ITEM.
WE WILL ALSO WANT TO GIVE A
CHANCE FOR PUBLIC COMMENT AT
THE END OF OUR HEARING AND OUR
GOAL IS TO WRAP UP AT THREE PM
IF NOT A FEW MINUTES BEFORE. SO
WITH THAT I WANT TO AT LEAST.
MAKE AVAILABLE FOR MR TANG ANY
OPENING REMARKS AND THEN WE CAN
MOVE INTO OUR PANEL. THANK YOU
MISTER CHAIR VERY EXCITED TO BE
HERE TODAY. WE WERE I WAS THE
BUDGET CHAIRMAN WE DID THE
INITIAL APPROPRIATION AND
TWENTY FIFTEEN. AND TO SEE
REALLY NOT ONLY THE FUNDING
GROW BUT THIS FIELD TO GROW AT
THE VARIOUS UNIVERSITIES AROUND
CALIFORNIA IS A TESTAMENT TO.
VERY MUCH THE CUTTING EDGE
RESEARCH TO CUTTING EDGE
THINKING. AND VERY MUCH THE
CUTTING EDGE ANALYSIS THAT IS
GOING ON AT EACH OF OUR
CRITICAL INSTITUTIONS VERY.
PROUD ABOUT WHAT IS HAPPENING
VERY EXCITED TO THROUGH THE
HERE. FROM ALL THE FACULTY
MEMBERS HERE TODAY ABOUT WHAT
IS GOING ON BUT ALSO REALLY
WHAT ELSE WE CAN DO TO KEEP.
SUPPORTING THE SEPARATES CAN BE
SUCH A CRITICAL EFFORTS I
REALLY DO BELIEVE THAT THE THAT
YOUR RESEARCH IS GOING TO
REALLY. HELP BREAK LOOSE MUCH
OF THE- FUTURE AROUND HOW WE
CHAT TACKLE SOME OF THESE VERY
CRITICAL DISEASES THAT WE ALL
FACE AS A SOCIETY HERE IN
CALIFORNIA SO AGAIN. THANK YOU
SO MUCH FOR ALL YOUR HARD. WORK
AND AGAIN VERY EXCITED ABOUT
HEARING THE TESTIMONY TODAY.
AND THANK YOU FOR YOUR
LEADERSHIP ON THE BUDGET FRONT
MR TANG. AND I DO WANT TO
INTRODUCE MY LEAD STAFF FROM
THE SELECT COMMITTEE ABOUT
TECHNOLOGY AND RAISING GOLLY
WHO ALSO DOUBLES AS MY
LEGISLATIVE DIRECTOR. ON OTHER
ISSUES BUT IS DEVELOPING AN
EXPERTISE. IN THIS ARENA SO
WITH THAT. I WOULD LIKE TO
INTRODUCE OUR FIRST PANEL WE
HAVE DOCTOR SHE IN A MIRROR.
AND DR JULIE AND A CALL FROM
THE GOVERNOR'S OFFICE OF
PLANNING AND RESEARCH PR. AS
WELL AS DOCTOR CLARA LAW JOHN
SHARE FROM THE UCLA INSTITUTE
FOR PRECISION HEALTH. AND 'M
NOT GOING TO READ THEIR BIOS
BECAUSE THAT WILL EAT UP SOME
TIME HERE TODAY AND WE WANT TO
GET TO THE MEAT OF THE
DISCUSSION BUT- I BELIEVE THERE
ARE HAND OUT SO YOU CAN SEE
THEIR COMPLETE. BIOS WHICH ARE
VERY VERY IMPRESSIVE AS YOU
MIGHT IMAGINE. AND WE WELCOME
ALL OF YOU. TO THE PANEL AND I
BELIEVE THAT WE ARE GOING TO
START WITH DOCTOR BEAR THANKS
FOR BEING HERE. THANK YOU SO
MUCH GOOD AFTERNOON CHAIR
SELECT COMMITTEE MEMBERS AND
OTHER GUESTS MY NAME IS SHANNON
YOUR AND I'M ONE OF THE SCIENCE
INITIATIVE TO ADVANCE PRECISION
MEDICINE. MY COLLEAGUE DR
JULIAN RECALL AND IARE HONORED
TO BE HERE TODAY ON BEHALF OF
THE GOVERNOR'S OFFICE OF
PLANNING AND RESEARCH. TO GIVE
YOU A SHOW OUR SHORT OVERVIEW
OF THE INITIATIVE AND AN UPDATE
ON THE DEMONSTRATION PROJECTS
THAT HAVE BEEN. FUNDED AS A
VERY BRIEF INTRODUCTION.
PRECISION MEDICINE IS AN
APPROACH TO DISEASE PREVENTION
AND TREATMENT. INTENDED TO
MAXIMIZE EFFECTIVENESS BY
TAKING INTO ACCOUNT INDIVIDUAL
VARIABILITY IN JEANS
ENVIRONMENT AND LIFESTYLE. IT
IS GENERALLY MOST CLOSELY
ASSOCIATED WITH USING GENETICS
TO SELECT TREATMENT REGIMENS
THAT WILL BE MOST EFFECTIVE.
BUT ALSO INCLUDES IDENTIFYING
PATIENTS THAT ARE AT RISK FOR
DEVELOPING DISEASE AND
PROVIDING EARLY INTERVENTIONS.
CAM CAN IN SOME CASES PREVENT
DISEASE ALTOGETHER. THE GOAL OF
PRECISION MEDICINE IS TO
REDEFINE. OUR UNDERSTANDING OF
DISEASE TREATMENT RESPONSE AND
HEALTH OUTCOMES THROUGH MORE
PRECISE MEASUREMENT OF
POTENTIAL CONTRIBUTORS. THE
CALIFORNIA INITIATIVE TO
ADVANCE PRECISION MEDICINE IS
THE ONLY PROGRAM OF ITS KIND IN
THE UNITED STATES IN WHICH THE
STATE HAS FUNDED COLLABORATIONS
BETWEEN RESEARCHERS CLINICIANS
COMMUNITY GROUPS AND INDUSTRY.
AT TO FOSTER THE CREATION OF
NEW TECHNOLOGIES AND THERAPIES
THAT CAN IMPROVE HEALTH FOR
CALIFORNIANS AS HE MENTIONS THE
INITIATIVE WAS LAUNCHED IN BY
THE STATE IN TWENTY FIFTEEN AND
SINCE THEN. EIGHT DEMONSTRATION
PROJECTS HAVE BEEN COMPLETED
WITH ADMINISTRATIVE SUPPORT
FROM UCSF. WE PROVIDEDYOU WITH
A REPORT THAT CONTAINS FORMAL
INDEPENDENT EVALUATIONS OF EACH
OF THE DEMONSTRATION PROJECTS.
THESE PROJECTS COVER A WIDE
RANGE OF TOPICS FROM DEPRESSION
AND MULTIPLE SCLEROSIS TO HEART
DISEASE AND REPRESENTS AN
INVESTMENT OF ELEVEN MILLION
DOLLARS IN STATE FUNDING. DR
BRENDAN SPIEGEL IS A PREVIOUS
AWARDEE WHO WILL BE TESTIFYING
LATER ON ABOUT HIS. WORK. THE
CURRENTLY FUNDED DEMONSTRATE
PROJECTS ALL FOCUSED ON CANCER
AND SPECIFICALLY ADDRESS THE
DISPARITIES IN OUTCOMES THAT
EXIST BETWEEN POPULATIONS OF
PATIENTS. IS A BOULDER ON
FOUNDER AND PRESIDENT OF THE
LATINO CANCER INSTITUTE IS A
CURRENT A WORDY AND YOU WILL
ALSO BE HEARING ABOUT HER WORK
LATER ON. AT THE GOVERNOR'S
OFFICE OF PLANNING AND RESEARCH
WE ARE ACTIVELY WORKING TO
MAXIMIZE THE IMPACT OF THE
ALLOCATED FUNDS BY LINING OUR
STRATEGY WITH OTHER STATE
ENTITIES INCLUDING THE SURGEON
GENERAL. THE OFFICE OF
STATEWIDE HEALTH PLANNING AND
DEVELOPMENT AND THE CALIFORNIA
CANCER REGISTRY. SINCE TWENTY
FIFTEEN FUNDING FROM THE STATE
HAS RESULTED IN SEVENTEEN NEWS
ARTICLES AND PRESS RELEASES
INCLUDING A STORY THAT FEATURED
ON THE COVER. OF TIME MAGAZINE.
EIGHTEEN POINT FOUR MILLION
DOLLARS HAVE BEEN PROVIDED IN
MATCHING FUNDS AND IN KIND
FUNDS. AND ADDITIONAL FOLLOW ON
FUNDING IS EXPECTED TO FLOOD OF
TEAMS BECAUSE OF THE STATE'S
INITIAL INVESTMENT. OUR TEAMS
OF ALSO GENERATED TWENTY FIVE
PEER REVIEWED PUBLICATIONS THUS
FAR AND GIVEN SEVENTY
PRESENTATIONS ABOUT THEIR WORK
INCLUDING A TEN MINUTE TALK BY
UCSF PROFESSOR CHARLES TRUE.
THE STAFF AND THE LEADERSHIP OF
A PR THRILLED BY THE BY THE
SUCCESSES OF OUR RESEARCH TEAMS
AND ARE LOOKING FORWARD TO
WORKING WITH STAKEHOLDERS TO
DEFINE. THE FUTURE OF THE
INITIATIVE AND THE FIELD OF
PRECISION MEDICINE. I WOULD NOW
INVITE CLARA TO DISCUSS THE
PRECISION MEDICINE ACTION PLAN
THANK YOU MISTER CHAIRMAN AND
ALL ALL ALL THE COMMITTEE
MEMBERS FOR THE INVITATION TO
PRESENT. SEE JULIANNE IS GONNA
BRING UP MY SLIDES. I'LL
INTRODUCE MYSELF DR CLEAR
ELECTION SHARE ON THE DEPUTY
DIRECTOR FOR THE UCLA INSTITUTE
FOR PRECISION HEALTH ALSO AN
ADJUNCT PROFESSOR IN THE
DEPARTMENT OF NEUROLOGY AT UCLA
I WORKED VERY CLOSELY WITH OPR
ON THE PRECISION MEDICINE
ACTION PLAN TO REPORT THAT I
BELIEVE FOLKS EITHER HAVE A
COPY OF OR- HAVE HAD AN
OPPORTUNITY TO PERUSE. AND I'M
ALSO WORKING WITH PR AS AN
ADVISER ON THE CAL THE CIA PM
AND THE NEXT ROUND OF FUNDING
THAT WE HAVE AVAILABLE. SEE SO
THE PRECISION MEDICINE ADVISORY
COMMITTEE JUST VERY BRIEFLY I
BELIEVE THAT CHAIRMAN MULLIN
ALREADY DESCRIBED THAT AND THE
KEY AGAIN IS TO THE PREVIOUS
ADMINISTRATION WAS REALLY
WANTING TO DELIVER A SET OF
RECOMMENDATIONS TO THE INCOMING
ADMINISTRATION AND THE
LEGISLATURE ON FIGURING OUT
STRATEGIES ON HOW WE COULD MAKE
PRECISION HEALTH THE PRECISION
HEALTH AND MEDICINE A REALITY
FOR ALL CALIFORNIANS AND I WANT
TO TAKE PAUSE TO HIGHLIGHT ALL
CALIFORNIANS UNFORTUNATELY
PRECISION MEDICINE IS SOMETHING
THAT CAN EASILY END UP TAKE
TAKING CARE OF THE 1% AND SO.
THROUGHOUT THE COMMITTEE ALL
COMMITTEE MEMBERS WERE VERY
MINDFUL TO MAKE SURE THAT THIS
WAS SOMETHING THAT WAS
AVAILABLE TO ALL. THE COMMITTEE
WAS CO CHAIRED BY. DOCTOR
KELSEY MARTIN WHO'S THE DEAN OF
THE DAVID GEFFEN SCHOOL OF
MEDICINE AT UCLA. AND DOCTOR A
TOOL BUTTE WHO IS PROFESSOR AND
DIRECTOR OF THE BOOK CAR
COMPUTATIONAL HEALTH SCIENCES
INSTITUTE AT USF AT UCSF. THE
COMMITTEE WAS COMPRISED OF
SIXTEEN KEY OPININ LEADERS AND
POLICY MAKERS ACROSS VARIOUS
SECTORS IN CALIFORNIA WHAT WAS
EXCITING ABOUT THIS IS THAT IT
WASN'T LIMITED TO ACADEMICS
WHICH IS OFTEN TIMES VERY VERY
TYPICAL FOR A LOT OF THESE
COMMITTEES. THE COMMITTEE WAS
EXPANDED TO INCLUDE
STAKEHOLDERS FROM INDUSTRY
ACADEMIA HEALTH SYSTEMS POLICY
MAKERS AND OTHER INDUSTRY
MEMBERS. OF IT AND I WILL I
JUST WANT TO TAKE A MOMENT THE
QUOTE HERE IS VERY TELLING THE
COMMITTEE BROUGHT TOGETHER
PERSPECTIVES FROM A VARIETY OF
INSTITUTIONS. AND PRECISION
MEDICINE IN CALIFORNIA CAN ONLY
BE REALIZED THROUGH THESE
PARTNERS WORKING
COLLABORATIVELY SHARING
KNOWLEDGE AND EXPERTISE ACROSS
INSTITUTIONS AND ACROSS THE
STATE. AND VERY BRIEFLY THIS
JUST HIGHLIGHTS THE BROAD
REPRESENTATION ACROSS THE STATE
AND ACROSS THE DIFFERENT
SECTORS. THE RECOMMENDATIONS
WERE DIVIDED ACROSS FOUR KEY
AREAS DATA IN THE CONTEXT OF
PRECISION MEDICINE WHAT DO WE
DO WITH ALL OF THE DATA THAT
ARE GENERATED. CALIFORNIANS AS
PARTNERS IN CARE AND RESEARCH
SPECIFICALLY COMMUNITY PATIENTS
HOW DO THEY INTERACT WITH THE
PRECISION IT WITHIN THE IT
PRECISION MEDICINE ECO SYSTEM.
EDUCATION AND WORKFORCE
DEVELOPMENT HICH IS A HUGE
PRIORITY FOR ALL PRECISION
HEALTH AND MEDICINE INITIATIVES
BECAUSE WE'RE CREATING IT'S
GOING TO REQUIRE THE
INFRASTRUCTURE IS GOING TO
REQUIRE. A VERY DIFFERENT
WORKFORCE AND THE LAST IS
REGULATORY CHALLENGES AND I'LL
BE TOUCHING UPON SOME OF THESE
IN IN THE NEXT FEW SLIDES. ONE
OF THE THINGS THAT WE WERE VERY
MINDFUL OF AS WE THOUGHT WELL
AS WE THOUGHT ABOUT
RECOMMENDATIONS OR THE
COMMITTEE THOUGHT WAS WAS.
DELIBERATING ON RECOMMENDATIONS
WERE THE SOCIAL DETERMINANTS OF
HEALTH. THE SOCIAL DETERMINANTS
ECONOMIC NEIGHBORHOOD PHYSICAL
ENVIRONMENT THINGS LIKE HOUSING
TRANSPORTATION. OF FOOD
COMMUNITY AND SOCIAL
INTEGRATION AS WELL AS HEALTH
CARE SYSTEMS ALL OF THESE
INFLUENCE HEALTH OUTCOMES AND
THERE'S A LOW VERBAL WIDE BODY
OF DATA. THAT SHOWS THE IMPACT
ON MORTALITY MORBIDITY
EXPECTANCY AT IS AND IT CAN
IMPACT THE ECONOMY TREMENDOUSLY.
WHAT WE DID IS THAT WE
HIGHLIGHTED A FEW
RECOMMENDATIONS MET YOU EACH
HAVE A COPY OF THE ENTIRE LIST
OF RECOMMENDATIONS AND WE WERE
TRYING TO THINK OF WHICH
RECOMMENDATIONS WOULD BE MOST
ACTIONABLE AND MOST. RELEVANT
TO THIS PARTICULAR SELECT
COMMITTEE ON BIOTECHNOLOGY. SO
I'M JUST GOING TO PRESENT A FEW
OF THEM AND OPEN FOR QUESTIONS
ON THESE AS WELL AS ANY OF THE
OTHERS THAT THAT ARE
INTERESTING TO MEMBERS. THE
FIRST IS THE LEGISLATOR SHOULD
REQUIRE VENDORS OPERATING
CALIFORNIA TO PROVIDE API'S OR
APPLICATION PROGRAMMING
INTERFACES TO ALLOW HEALTH
SYSTEMS TO PROVIDE BROADER
PATIENT ACCESS TO COMPREHENSIVE
E. H. R. DATA. WITH THE FIRST
THING THATIT IS WAS WAS
DISCUSSED. WAS THAT PATIENT
ACCESS TO THEIR OWN EHR DATA IS
INCREDIBLY LIMITED ESPECIALLY
WHEN IT COMES TO RADIOLOGY
SCANS PATHOLOGY IMAGES OR
CLINICAL NOTES. THE COMMITTEE
RECOMMENDED THAT THE STATE GO
BEYOND THE REQUIREMENTS OF THE
TWENTY FIRST CENTURY CARES ACT
WHICH WHICH MANDATES THAT
PATIENTS DO HAVE ACCESS TO
THEIR IT TO THEIR CLINICAL DATA
AND REQUIRED VENDORS TO PROVIDE
SOME OF THE MORE COMPREHENSIVE
DATA TO PATIENTS THROUGH THESE
API'S. SO THAT THEY CAN HAVE
GREATER ACCESS. APR EYES OR
SOMETHING THAT THE COMMITTEE
DISCUSSED A LOT IN THE CONTEXT
OF DATA. BECAUSE MANY HELD E.
H. R. SYSTEMS DON'T EVEN TALK
TO EACH OTHER SO THE KEY IS FOR
THERE TO BE. INFRASTRUCTURE TO
SUPPORT INTER OPERABILITY. THAT
WOULD ALLOW NOT JUST PATIENTS
TO INTERACT WITH THE H. R.
BETTER BUT PATIENTS TO
COMMUNICATE WITH PROVIDERS AND
FOR FOLKS THAT ARE IN DIFFERENT
HOSPITAL SYSTEMS TO BE ABLE TO
HAVE THAT YOU CHORE COMMUNICATE
ACROSS ALL OF THE STAKEHOLDERS.
THE SECOND IS RECOMMENDATION
AND AS YOU CAN SEE ALONG THE
YELLOW THOSE ARE THE KEY AREAS.
MOST OF THESE ARE CROSS CUTTING
IN THE SENSE THAT THEY- THEY
ARTICULATE WITH IT SOMETIMES
ONE BUT IN MOST CASES MORE THAN
ONE AREA OF. DEVELOPMENT HERE.
SO THROUGH LEGISLATION AND
INCENTIVES THE COMMITTEE FELT
STRONGLY THAT CALIFORNIA SHOULD
REDUCE BARRIERS FOR PATIENTS TO
OBTAIN AND SHARE THEIR DATA AND
CORRECT ERRORS IN THEIR EHRS.
WE KNEW THAT WE KNOW THAT EACH
OUR DATA RIDDLED WITH ERRORS
BUT IN ORDER TO LEVERAGE THE
DATA FOR PRECISION MEDICINE THE
DATA HAVE TO BE ACCURATE SO WE
DON'T WANT TO CREATE A
MECHANISM BY WHICH WE START
GARBAGE IN GARBAGE OUT. THE
COMMITTEE FELT STRONGLY THAT
PATIENTS SHOULD BE STORED OF
THEIR OWN DATA CURRENTLY HEALTH
SYSTEMS BELIEVE THAT THEY ARE
THE STORE IT'S OF DATA OF
PATIENT DATA. BUT PATIENTS
ACTUALLY WANT TO HAVE A
MECHANISM BY WHICH TO CREATE
AND UPDATE THEIR OWN DATA TO
PREVENT ERRORS. AND THIS WAS A
TOPIC OF A LOT OF DISCUSSION
FOR THE COMMITTEE THEY FELT
THAT A LOT OF PATIENTS THAT DID
THE INFORMATION IN THE H. R.
WAS INCORRECT SO IMAGINE
PRESENTING TO AN EMERGENCY ROOM
AND SOMEBODY HASN'T INCOMPLETE.
INCOMPLETE MEDICATION LIST OR A
PHYSICIAN IS TRYING TO TREAT
YOU FOR SOMETHING AND IT
DOESN'T HAVE A LIST OF ALL
CURRENT MEDICATIONS AND SO THEY
DON'T KNOW WHAT COULD BE
CONTRAINDICATED ESPECIALLY IF
THERE'S A SURGICAL PROCEDURE.
ALL SORTS OF INFORMATION THAT
THAT THEY FELT THAT PATIENTS
FELT NEEDED TO BE CORRECTED
PATIENTS SHOULD ALSO BE ABLE TO
SHARE ONLINE DATA WITH ANY
PROVIDER REGARDLESS OF THE
BRAND OF EACH OUR SYSTEM THAT'S
IN PLACE THE KID TO MAKE TO THE
COMMITTEE FELT PRETTY STRONGLY
THAT PATIENTS AS STEWARDS OF
THEIR OWN DATA SHOULD BE ABLE
TO DETERMINE WHO ELSE GETS
ACCESS. TO THOSE DATA.
INCLUDING RESEARCHERS. AND
LASTLY THE COMMITTEE FELT THAT
PATIENTS SHOULD BE ABLE TO
CONSENT TO SHARE ANY SUBSET OF
THEIR DATA SPECIFICALLY FOR
MEDICAL RESEARCH. THE NEXT
RECOMMENDATION THAT WE THOUGHT
WAS VERY RELEVANT HERE IS IN IN
THE AREA OF REGULATORY AFFAIRS.
AND HERE THE GOAL WAS TO ENACT
LEGISLATION TO FURTHER
STRENGTHEN THE TELL GINA WHICH
IS THE GENETIC INFORMATION
NONDISCRIMINATION ACT AND TO
ENSURE THAT IT PREVENTS THE ON
AUTHORIZED USE OF GENETIC
INFORMATION TO INFLUENCE
WHETHER IT'S EMPLOYMENT OR
EFFECT ACCESS TO HEALTH LIFE.
AND MORE SPECIFICALLY HERE LIFE
LONG TERM DISABILITY INSURANCE
SO TO TAKE A STEP BACK THE
FEDERAL THE FEDERAL LAW GINA.
PREVENTS EMPLOYERS ARE HEALTH
INSURERS FROM USING GENETIC
INFORMATION TO PREVENT SOMEONE
FROM GETTING A JOB OR HEALTH
INSURANCE. GINA DOES NOT
HOWEVER APPLY TO EMPLOYERS WITH
FEWER THAN FIFTEEN EMPLOYEES.
IT ALSO DOES NOT APPLY FOR
INDIVIDUALS COVERED BY SEVERAL
FORMS OF FEDERAL AND MILITARY
INSURANCE. THROUGH CAL GINA SO
CALIFORNIA WENT AHEAD AND ADDED
EXTRA PROTECTIONS CALIFORNIA
EXPANDED THEM TO INCLUDE
EMERGENCY MEDICAL SERVICES
HOUSING MORTGAGE LENDING
EDUCATION AND OTHER STATE
FUNDED PROGRAMS BUT NOT LIFE
FOR DISABILITY INSURANCE. THE
RECOMMENDATION FROM THE CAN ON
BEHALF OF THE COMMITTEE WAS
THAT CALIFORNIA SHOULD EXTEND
THESE PROTECTIONS TO THE
INCLUDES LIFE AND DISABILITY
INSURANCE THERE SEVENTEEN
STATES THAT HAVE LAWS THAT ARE
PROTECTIONS IN PLACE FOR LIFE
AND SEVENTEEN FOR DISABILITY I
DON'T KNOW THE OVERLAP IS AMONG
THOSE ARE BETWEEN THOSE STATES.
AND EIGHT FOR LONG TERM CARE
INSURANCE YOU CAN IMAGINE A
PATIENT WITH HUNTINGTON'S
DISEASE HUNTINGTON'S IS AN
AUTOSOMAL DOMINANT DISORDER
WHICH MEANS THAT ALL IT TAKES
IS FOR ONE PERSON OR OR ONE
COPY OF THE PARTICULAR MUTATION
IN THE H. T. T. JEAN. FOR YOU
TO DEVELOP OUTSIDE PART OF ME
HUNTINGTON'S. OFF SPRING I HAVE
A FIFTY PER CHECK PERCENT
CHANCE OF DEVELOPING THE
DISORDER. RIGHT NOW THERE ARE.
VERY MANY ANONYMOUS TESTING
SITES BECAUSE PATIENTS ARE
MORTIFIED OF HAVING THIS
INFORMATION LEAKED TO WHAT E.
IT TO ANYBODY THAT COULD
PREVENT THEM FROM GETTING
DISABILITY INSURANCE OR LIFE
INSURANCE SPECIFICALLY. AND SO
ONE OF THE THINGS THAT'S BEEN
MOST DIFFICULT FOR SOME OF OUR
PATIENTS IS THAT THEY ARE
REFUSING TO HAVE GENETIC
TESTING WHEN MEDICALLY
NECESSARY BECAUSE OF THE FEAR
THAT RAMIFICATIONS. ON THE
DISCRIMINATORY SIDE. OOPS
OVERARCHING CONSIDERATIONS AND
CONCLUSION SO IN SUMMARY. THE
COMMITTEE FELT VERY VERY
GRATEFUL TO HAVE HAD THE
OPPORTUNITY TO CONTENT COME
TOGETHER TO DEVELOP THESE
RECOMMENDATIONS A RESERVE IT
WAS UNANIMOUS THAT WE SHOULD
CONTINUE TO INVEST IN PRECISION
HEALTH AND MEDICINE. IT WAS
ALSO IMPORTANT TO ESTABLISH AN
ECONOMIC AND COST MODEL COUNCIL
PRECISION MEDICINE THE FEARS
ARE THAT IT COULD EASILY
BANKRUPT US NOT AS AN ONLY AS A
NATION BUT AS THE STATE IF NOT
DONE WELL. SO TO CONTINUE THE
WORK IDENTIFIED IN THIS REPORT
AND IF INFORMED FUTURE FUNDING
AND POLICY DECISIONS IT WOULD
BE IMPORTANT TO ESTABLISH SOME
KIND OF COUNSEL. NOW JUST TO
REITERATE IT REITERATE VERY
BRIEFLY THROUGH THE CIA PM. THE
STATE HAS INVESTED FIFTY THREE
MILLION TO SUPPORT RESEARCH AND
PRECISION MEDICINE ACROSS THE
STATE. THE FIRST THIRTEEN
MILLION BROUGHT IN A MATCHING
TEN MILLION AN INSTITUTIONAL
FOUNDATION AND PRIVATE FUNDS
THERE ARE MANY OPPORTUNITIES TO
LEVERAGE OUTSIDE FUNDING. IN
ADDITION TO CANCER WERE
STRATEGIES OUR MOST ADVANCED
THE RECOMMENDATION RESOUNDINGLY
WAS TO INVEST THE REMAINING
THIRTY MILLION WHICH IS WHICH
RIGHT NOW WE ARE WORKING ON. IN
OTHER HIGH IMPACT DISEASE AREAS
SUCH AS DIABETES UP VERY
IMPORTANT MENTAL HEALTH
ESPECIALLY DEPRESSION CHILD
HEALTH. AND OTHER A DISEASE
AREAS OF INTEREST. AND SO
LASTLY THROUGH STRATEGIC POLICY
MAKING AND SEED FUNDING
CALIFORNIA CAN BECOME THE
GLOBAL EXEMPLAR. IN THE
DEVELOPMENT AND USE OF
PRECISION MEDICINE TOOLS THAT
WILL IMPROVE HEALTH AND
ULTIMATELY REDUCE HEALTH
DISPARITIES WITHOUT BREAKING
THE BANK. AND SO THE KEY IS TO
MAKE THIS A REALITY FOR ALL.
AND NOT JUST THE 1% THANK YOU
VERY MUCH FOR YOUR TIME. THANK
YOU VERY MUCH DOCTOR AND I
APPRECIATE OF THAT LAST POINT
OF EMPHASIS AROUND. ACCESS FOR
ALL AND DEMOCRATIZING SMALL THE
ACCESS TO A PRECISION MEDICINE
ACROSS THE STATE I THINK THAT'S
IN THE SPIRIT. OF WHAT THIS A
COMMITTEE TO SELECT COMMITTEE
STRIVES FOR AND I APPRECIATE
THAT I DO WANT TO WELCOME. MY
COLLEAGUE FROM THE SAN DIEGO
AREA ASSEMBLY MEMBER AND ARMOR
MINORITY LEADER. MARIE WALDRON
THANK YOU VERY MUCH ASSEMBLY
MEMBER WALDRON FOR JOINING US I
HAD JUST A. COUPLE OF QUICK
ONES ON THAT. ISSUE AROUND DATA
AND ERRORS. WHAT IS GENERALLY
THE SOURCE OF THOSE ERRORS. AND
WHY ARE HEALTH SYSTEMS SO
RESISTANT. TWO PATIENTS OWNING
THEIR OWN. DATA WELL. THAT'S IT
THAT'S A GREAT QUESTION AND
THAT'S EXACTLY WHAT THE THOSE
WERE TWO KEY ISSUES THAT WERE
DISCUSSED AT THE COMMITTEE
LEVEL EAT THE EHRS ARE RIDDLED
WITH ERRORS AT FOR A LOT OF
REASONS MANY DIFFERENT PEOPLE
PUTTING IN DATA. AS YOU MIGHT
HAVE SOME LAB VALUES THAT ARE
ACTUALLY IN CORRECTIVE KIDDING
THAT CAME BACK FROM A
PARTICULAR LAB AND THEY WERE
WRONG AND THEY WERE REPEATED OR
FLAG. YOU MAY HAVE THE PATIENTS
WHO ARE THEY'RE THEY'RE THEY
THEMSELVES ARE PROVIDING THE
INFORMATION TO THE PROVIDER THE
UPDATED INFORMATION TYPICALLY
WHAT A LOT OF HEALTH SYSTEMS
ARE DOING IS THAT AT AT FIRST
ENCOUNTER WITH THE PATIENT.
THEY WILL ASK THEM WHETHER
THEY'LL CHECK THEIR MEDICATIONS
AND THERE'S A PROTOCOL THAT
THEY USE THAT THE MEDICAL
ASSISTANCE TYPICALLY USED TO
MAKE SURE THAT. TO ENSURE THAT
THOSE DATA ARE CORRECT. I AM
NOT QUITE SURE WHAT THE Q. WHY
PROCESS SEES THAT ARE A WHY
DATE YOU KNOW HOW OR WHY I KNOW
THAT YOU SEE LIKE WE'RE WORKING
VERY CLOSELY WITH THE HEALTH
SYSTEM TO IDENTIFY ERRORS. AND
SOMETIMES. THERE'S ONE THING TO
IDENTIFY THEM THERE'S ANOTHER
TO IDENTIFY THEM AND GET THEM
BACK TO THE SOURCE. AND SO IT
IT DOES THAT IT THOSE ARE SOME
OF THE ISSUES THAT HEALTH
SYSTEMS ARE WRESTLING WITH WHEN
IT COMES TO A DATA CLEANING. SO
I AM INTERESTED IN LEGISLATING
IN. THE CAL G. I. N. A. ARENA
WHAT THAT LOOKS LIKE REMAINS TO
BE SEEN BY WELCOME A
CONVERSATION. ON THAT BUT YOU
MENTIONED SEVENTEEN OTHER
STATES FOR EXAMPLE EXTENSOR
PROTECTIONS TO LIFE INSURANCE
FOR EXAMPLE. JUST ANSWER A
BIGGER PICTURE. HOW DOES
CALIFORNIA'S STACK UP IN
RELATION TO SAY OTHER STATES
WHO SEE THIS AS AN IMPORTANT
AREA. HOW DO WE SIR HOW DO WE
RANK SO TO SPEAK WHEN YOU LOOK
AT THE OTHER STATES WITH WITH
INVESTMENT IN THIS SECTOR. SO I
WILL SAY THAT CALIFORNIA WAS
ONE OF THE LEADERS IN ONCE GINO
WAS RELEASED IN DEFINITELY
TRYING TO ADDRESS THE ISSUES OF
PRIVACY AND DISCRIMINATION
WITHIN THE FIELD OF GENETIC AND
GENOMIC MEDICINE. UP WE DO
PROVIDE WE HAVE MANY PROVISIONS
EMERGENCY MEDICAL SERVICES
MORTGAGE LENDING AND A LOT OF
DIFFERENT AREAS THAT OTHERS
DON'T COVER I DO THINK THAT
LOVE THAT LIFE DISABILITY AND
LONG TERM CARE. ARE REALLY
CRITICAL AND FOR US TO. COMBAT
SORT OF SORT OF MOVE THE NEEDLE
AND REALLY SUPPORT OR ACT
ACTUALLY AT JUST AT PAR WITH
OUR WITH OUR OTHER STATES WOULD
BE A HUGE LEAP FORWARD. MY
COLLEAGUES HAVE ANY QUESTIONS
AND MISS WALDRON I WANTED TO
FORTY THE OPPORTUNITY TO MAKE
ANY OPENING REMARKS SINCE
YOU'RE KIND ENOUGH TO JOIN US.
THANK YOU IT'S GOOD TO BE HERE.
I FIND. PRECISION MEDICINE AND
THE DATA DRIVEN MEDICINE TO BE
SUCH A OF A POTENTIAL FOR
PATIENTS WHO ARE RIGHT NOW AND
ESPECIALLY YOU KNOW AS THE
CHAIRMAN SAID. IN MEDI CAL YOU
KNOW GETTING ACCESS TO THAT
KIND OF TREATMENT AND YOU KNOW
THE DATA FOR FOLKS EVEN IN MEDI
CAL IS SOMETHING THAT WE
STRIVING TO ACCOMPLISH THIS WE
WANT TO MAKE SURE AND YOU KNOW
I ALWAYS TRY TO ADVOCATE FOR
THE SINGLE MOM WHO CAN'T SPEAK
ENGLISH. HOW IS SHE GOING TO
GET FOR HER CHILD YOU KNOW THE
BEST CARE BECAUSE IN THE LONG
RUN I BELIEVE WILL SAVE MONEY
IF WE DO THAT BUT I DO HAVE A
QUESTION. OF WOULD JUST KIND OF
A GENERAL QUESTION WHEN WE LOOK
AT. DATA COLLECTION AND YOU
KNOW THEN THERE'S A LOT OF
TIMES BARRIERS WITH PRIVACY AND
HIP ANOTHER THINGS. HOW CAN WE-
ATTAIN THE DATA THAT WE NEED TO
IN SPITE OF THAT YOU KNOW IS. I
DON'T KNOW HOW TO ASK THE
QUESTION VOTE COULD BECAUSE WE
NEED ACCESS TO THE DATA I DO A
LOT OF WORK WITH AIDS HIV IN
THAT FIELD AND YOU KNOW THAT'S
BEEN AN ISSUE TO THE- TRYING TO
BE ABLE TO GET THE DATA SO THAT
WE CAN. USE IT TO HELP. YOU
KNOW THE. THE GOOD OF THE WHOLE
WITHOUT IMPACTING THE
INDIVIDUAL AND THAT'S IT THAT'S
THAT'S IT THAT'S A CRITICAL
ISSUE WITHIN THE FIELD OF
PRECISION HEALTH AND MEDICINE
AND ONE THAT WAS DEFINITELY
DISCUSSED WITHIN THE WIT WITHIN
THIS COMMITTEE UP ONE OF THE
KEY ISSUES AND. YOU SEE THIS
EVERYWHERE IT'S NOT JUST WITH
PRIVATE INDUSTRY NOT WANTING TO
SHARE DATA ACADEMICS. ON THE A
FOR ACADEMIC MEDICAL CENTERS
DATA BREACHES ARE. FEARED SO
EVERYBODY IS VERY MINDFUL THAT
AS STEWARDS OF DATA THEY WANT
TO MAKE SURE THAT IT'S NOT
LEAKED AND THAT WE ARE BEING
FAITHFUL AND- OF. AUTHENTICS
TOWARDS ONE ONE OF THE THINGS
THAT THE COMMITTEE ACTUALLY
DID. DID DISCUSS AT LENGTH WAS
HAVING SOME SORT OF CENTRALIZED
DATA WAREHOUSE STAKEHOLDERS
HAVE TO BE INCENTIVIZE TO
PARTICIPATE. THERE WOULD HAVE
TO BE OBVIOUSLY A DATA
AGREEMENTS IN PLACE SO THERE
WOULD THERE WOULD HAVE TO BE A
GROUP THAT PERHAPS COULD COME
UP WITH. DATA USE AGREEMENTS
CONFIDENTIALLY CONNECTICUT FOR
THE CHARITY IN PRIVACY
AGREEMENTS UP FOR PATIENTS TO
SHARE THEIR DATA DEPENDING ON
THE KIND OF DATA THEY NEED TO
PROVIDE CONSENT AND SO THERE
HAVE TO BE INCENTIVES FOR FOLKS
TO RE CONSENT PATIENTS THAT.
HAVE NOT BEEN CONSENTED WITH
WHATEVER CURRENT LANGUAGE WOULD
HAVE TO GO IN THERE SO I DO
THINK IT'S SOMETHING THAT
SHOULD BE DISCUSSED FURTHER
IT'S SOMETHING THAT WAS TOP OF
MIND FOR THIS PARTICULAR
COMMITTEE. BECAUSE BRINGING
DATA TOGETHER PRECISION HEALTH
AND MEDICINE IS IT'S ABOUT
LOOKING FOR PATTERNS IN DATA
ENTRY. WHAT'S GOING TO GET US
THERE IS A LOT OF DATA. SO THE
MORE DATA WE HAVE THE BETTER
WE'RE GOING TO BE ABLE TO MAKE
PREDICTIONS SO. CRITICS FOR THE
STATE TO THINK ABOUT HOW TO
CREATE A BODY AN ENTITY AND A
MECHANISM. TO SUPPORT THAT
WOULD I THINK WHAT AT
INCREDIBLE VALUE. I HAVE A
LITTLE BIT TAD IF I MAY UM WE-
YOU MENTIONED INFORMED CONSENT
AND THAT. IN PRACTICE MEANS.
READING A SCRIPT AND HAVING TO
BE SIGNED SOMETHING AND THAT
MIGHT BE VERY DIFFERENT
DEPENDING ON THE CULTURE
BACKGROUND AND LANGUAGE OF THE
PERSON IT IS HE'S BEEN
CONSENTED SO HAVING A-
CULTURALLY COMPETENT. CONSENT
IN ADDITION TO WHATEVER IS
REQUIRED BY FEDERAL LAW AND I
THINK IS REALLY IMPORTANT. AND
ONE OF THE AN EXAMPLE OF KIND
OF WHAT YOU'RE TALKING ABOUT IN
TERMS OF. THE BARRIERS TO
SHARING RESEARCH AND THE EFFECT
THAT IT IS CURRENTLY HAVING ON
CLINICAL CARE IS THAT.
PHYSICIANS WHO TREATS PATIENTS
WITH DRUG ADDICTIONS ARE BY LAW
NOT ALLOWED TO SHARE THAT
INFORMATION WITH ANY OTHER.
TREATING PHYSICIANS AND THAT
LAW WAS PUT INTO PLACE A LONG
TIME AGO WHEN ADDICTION
MEDICINE THE SORT OF THOUGHT OF
AS ITS OWN ISLAND OF CARE. BUT
NOW WE AS WE INCORPORATED INTO
AT THE BROADER MENTAL HEALTH
CARE IT MIGHT BE TIME TO
REVISIT THOSE FEDERAL
GUIDELINES. I WOULD ALSO LIKE
TO POINT TO ONE OF OUR
PREVIOUSLY FUNDED GRANTS TO
DOCTOR SHELDON GREENFIELD AT UC
IRVINE HE WAS DEVELOPING A
FEDERATED DATA SYSTEM WHERE BY
VARIOUS INSTITUTIONS V. A.'S
YOU SEE AND COUNTY HOSPITALS
WERE ABLE TO SHARE THEIR DATA
WITHOUT STEPPING ACROSS THEIR
OWN INSTITUTIONAL DATA PRIVACY.
POLICIES SO IT WAS ACCESS TO DE
IDENTIFY DATA WITHOUT ACTUALLY
PROVIDING DATA FOR THEM TO USE
FOR ANY REASON. FEDERATED
DATABASE SYSTEM IT'S SOMETHING
IN THE FUTURE ABSOLUTELY AND SO
WHEN YOU CONSIDER WHAT'S GOING
TO MAKE FOLKS LESS SKITTISH IF
YOU SAY THAT THEY CAN KEEP
THEIR DATA BUT THE DATA CAN BE
FEDERATED THE INFRASTRUCTURE TO
SUPPORT THAT IS. IS GOING TO BE
CRITICAL AND BUT IT IS IT HAT
WE HAVE DATA TO SHOW THAT IT IS
A VERY POSITIVE. AVENUE IT
ASSEMBLY MEMBER WALDRON I WOULD
ALSO LIKE TO IT RESPOND TO A
COMMENT THAT YOU HAD MADE. WITH
RESPECT TO THE 1% AND TO MEDI
CAL PATIENTS AND ONE OF THE
THINGS THAT WAS NOT IN THE
REPORT BUT IT IT COULD HAVE
INCREDIBLE VALUE IS THE IS THE
OTHER SIDE OF THE TRANSLATIONAL
PIPELINE WE'RE COLLECTING ALL
OF THIS DATA. AND AT AND WE
NEED TO BE MINDFUL OF HOW THESE
DATA OR THIS INFORMATION IS
DELIVERED TO PATIENTS IT TO
PATIENTS ON THE OTHER SIDE THE
BEDSIDE SO TO SPEAK. AND
THERE'S A FEDERAL BILL THAT'S
BEEN SITTING THAT WOULD MAKE
GENETIC COUNSELORS CMS
PROVIDERS CURRENTLY THEY'RE NOT
AND BY MAKING THEM CMS
PROVIDERS IT WOULD IT WOULD
ACTUALLY INCREASE ACCESS TO
FOLKS WHO IN MEDICARE AND ALSO
MEDI CAL AND SO PERHAPS THE
STATE COULD. DO SOMETHING TO
FASTER TO CONSIDER MAKING
GENETIC COUNSELORS PROVIDE A
PROVIDERS FOR MEDI CAL PRIOR TO
THAT BILL MOVING THROUGH. THE
FEDERAL GOVERNMENT. SO QUESTION
FOR. DOCTORS MAYOR AND MCCALL
OF THESE EFFORTS WERE STARTED
ANOTHER BROWN ADMINISTRATION
WE'RE NOW INTO THE NEW SOME
ADMINISTRATION. AND JUST WANT
TO GET A FEEL FOR WHAT THE NEW
ADMINISTRATION'S VISION AS FOR
CONTINUING LEADERSHIP. IN THIS
ARENA SORT OF A GENERAL
QUESTION. BUT IF I COULD ADD
LITTLE SPECIFICITY AS I
INDICATED AT THE TOP WORKFORCE
DEVELOPMENT. WORK FORCE
PIPELINE ARE CRUCIAL TO THE
CHARTER OF THIS SELECT
COMMITTEE SO MAYBE IF YOU COULD
ANSWER THAT QUESTION. AND THEN
JUST ADD A LITTLE BIT ON. HOW
WE MIGHT BE ABLE TO COLLABORATE
WITH THE ADMINISTRATION
SPECIFICALLY ON THAT WORK FORCE
PIECE TO RELIEVE. YOUR BILL
THIS OUT AND BRING ACCESS
ACROSS. THE BROAD GEOGRAPHY OF
OUR STATE. CERTAINLY THE-
CURRENT ADMINISTRATION IS VERY
INTERESTED IN REACHING OUT TO
OTHER STAKEHOLDERS TO MAKE SURE
THAT THE PRIORITIES IN THE
LEGISLATURE AND WITH OTHER
EXTERNAL STAKEHOLDERS ALIGN
WITH EACH OTHER AND SO WE CAN
REALLY TAKE ADVANTAGE OF THE
FUNDING THAT THE LEGISLATURE
HAS PROVIDED AND USETHAT TO
IT'S YOU KNOW MAXIMUM
CAPABILITY AND IN THAT VEIN WE
ARE NEWLY COORDINATING WITH THE
CALIFORNIA CANCER REGISTRY THE
NEWLY APPOINTED SURGEON GENERAL
AND THE ASKED AT THE- OFFICE OF
STATEWIDE HEALTH. PLANNING AND
DEVELOPMENT I KNOW THAT WE HAVE
ALSO AND WE'RE IN THE PROCESS
OF REACHING OUT TO OTHER
PARTNERS AND IN THE BUSINESS
AND ECONOMIC DEVELOPMENT PAIN
AND SO YOU WE REALIZE THAT IS
IMPORTANT ONE THING IS THAT OUR
CURRENT STATUTE DOES NOT
INCLUDE. A WORKFORCE
DEVELOPMENT PIECE IN IT THIS
STATUE THAT WAS WRITTEN IN
TWENTY FIFTEEN SO WE
TECHNICALLY AREN'T ALLOWED TO
JUDGE THE MERITS OF THE
PROPOSALS ON ANY AMOUNT OF
TRAINING OR WORKFORCE
DEVELOPMENT THEY DO AND SO
INCORPORATING THAT PIECE. AT
INTO THE STATUTE MIGHT BE ONE
WAY FIXING THAT. ANY OTHER
QUESTIONS FROM MY COLLEGE
BEFORE WE RELEASE THE PANEL
VERY VALUABLE INFORMATION THANK
YOU VERY MUCH LOTS OF DETAIL OF
BEING PROVIDED TO THE COMMITTEE
ON IN THESE REPORTS GRATEFUL
FOR TAKING THE TIME. ALL THE
ALL THREE OF YOU TO SHARE YOUR
KNOWLEDGE WITH US THANK YOU
VERY MUCH AND WITH THAT WE
WILL. THANK YOU WE WILL
TRANSITION. TO OUR- SECOND
AGENDA ITEM. WE'RE GONNA DO A
SLIDE SWITCH OUT HERE I WOULD
LIKE TO BRING TO THE PANEL
DOCTOR RENDON SPIEGEL FROM
CEDAR SINAI MEDICAL CENTER. AS
WELL AS ISABEL DERON OF THE
LATINO CANCER INSTITUTE. AND
ONE OF MY FAVORITE BAY AREA
REPORTERS AS A AS A BAY AREA
JOURNALISM STUDENT FROM BACK IN
THE DAY IT'S AN HONOR TO HAVE
YOU. WITH US AT THE CAPITOL
TODAY IS STRONG AND WITHOUT. I
THINK WE'LL START WITH. DOCTOR
SPIEGEL THANK YOU VERY MUCH FOR
BEING HERE THANK YOU MISTER
CHAIRMAN AND THANK YOU TO THE
STATE FOR FUNDING ARE CAPM
PROJECT AND MICHAEL TODAY IS TO
PRESENT TO YOU. HIGH LEVEL
RESULTS OF ONE OF THE FUNDED
PROJECTS AND MORE SO TO PROVIDE
SORT OF A VISION OF HOW WE CAN
THINK ABOUT PRECISION MEDICINE
AS A PUBLIC PRIVATE
PARTNERSHIP. AND SHOW SOME
EXAMPLES OF HOW WE'VE BEEN ABLE
TO ACHIEVE THAT AT CEDAR SINAI
MY ROLE CEDAR SINAI'S AND THE
DIRECTOR OF HEALTH SERVICES
RESEARCH I'M ALSO A PROFESSOR
OF MEDICINE AND PUBLIC HEALTH
AT UCLA AND AN ASSISTANT DEAN.
IN THE MEDICAL SCHOOL AT UCLA.
SO OUR FOCUS IN THIS PROJECT
AND I JUST WANT TO SAY I LOVE
LIVING IN A STATE THAT LOVE
SCIENCE SO I VERY MUCH
APPRECIATE THE OPPORTUNITY TO
BE HERE TODAY AND PRESENT THESE
RESULTS. IS REALLY FOCUSED ON
AN ISSUE THAT AFFECTS ALL
CALIFORNIANS ARE ALL PEOPLE
ACROSS SOCIOECONOMIC STRAT A
AND THAT'S HEART DISEASE AND I
WANT TO START WITH AN IMAGE
THIS IS. FRIEND OF MINE NAMED
ERIN AND AT THIS PARTICULAR
MOMENT HE IS MONITORING A GROUP
OF PATIENTS IN THE COMMUNITY
WHO HAVE BEEN WIRED UP WITH
WEARABLE BIOSENSORS THAT HAVE
BEEN CREATED HERE IN
CALIFORNIA. AT THIS PARTICULAR
MOMENT IS NOTICING CHANGES ON
AN EKG THAT SUGGESTS THAT
SOMEBODY MAY BE ABOUT TO HAVE A
HEART ATTACK SO HE CALLS UP
THAT PATIENT. AND HE SAYS HOW
ARE YOU FEELING MISTER ANDERSON
AND HE SAYS I'M FEELING FINE HE
SAYS I NEED TO TAKE TWO
ASPIRINS AND GO TO THE
EMERGENCY DEPARTMENT RIGHT NOW.
BECAUSE YOU'RE ABOUT TO HAVE A
HEART ATTACK. NOW TURNS OUT
THAT THIS IS ACTUALLY NOT REAL
THIS IS A SEVEN MILLION DOLLAR
SET. ON THE BACKLOT OF
UNIVERSAL STUDIOS. AND THIS IS
A TELEVISION SHOW THAT WAS
PRIME TIME AND CBS BASED UPON
OUR RESEARCH GRANT FROM CA A
PM. SO I WAS FORTUNATE TO
PARTICIPATE AND SCRIPTING THIS
SHOW AND BEING A PART OF THE
SHOW THAT'S ONE OF THE BENEFITS
OF BEING A LOS ANGELES BUT THIS
IS A VISION. OF WHERE WE WANT
TO BE AND WHAT WE STUDY DOES
WHETHER WE ACTUALLY CAN GET
THERE. SO THIS ISN'T SO SCIENCE
FICTION THERE ACTUALLY ARE
EXAMPLES OF THIS IN REAL LIFE
RIGHT NOW THIS IS A MERCY
HEALTH SYSTEM. IN THE MIDWEST
AND WE'RE STARTING TO SEE
EXAMPLES LIKE THIS IN
CALIFORNIA. DOESN'T LOOK QUITE
AS FANCY BUT WE HAVE THE
ABILITY NOW. TO USE WEARABLE
BIOSENSORS IN A WIDE VARIETY OF
REMOTE PATIENT MONITORING
TECHNIQUES. TO EVALUATE
PATIENTS WHEN THEY'RE NOT IN
THE HOSPITAL WITH US WHEN
THEY'RE NOT RIGHT IN FRONT OF
US. IN EMERGENCY DEPARTMENT OR
IN A CLINIC. OR IN AND I'M
OPERATING ROOM. SO WE CAN DO
THIS BECAUSE WE HAVE ACCESS NOW
TO ALL SORTS OF DIFFERENT
DEVICES THIS IS CREATED BY. A
COMPANY CALLED ALIVE CORE HERE
IN CALIFORNIA THIS IS THE CAR
GET DEVICES IS AN FDA CLEARED
DEVICE THAT WE USE REGULARLY
AND USED IN THIS STUDY. TO
MONITOR PATIENTS HEARTS. IT IS
AN FDA CLEARED EKG MONITOR. YOU
CERTAINLY MAY HAVE HEARD THAT
APPLE HAS ITS OWN AT FTA
CLEARED VERSION OF THIS AS WELL
FOR THE FOR THE APPLE WATCH.
AND THIS IS JUST THE BEGINNING
WE HAVE ALL SORTS OF DIFFERENT
DEVICES THAT COME FROM. MANY OF
OUR PARTNERS HERE IN CALIFORNIA
FITBIT FOR EXAMPLE IS A COMPANY
WE WORK CLOSELY WITH AND I'LL
SHOW A LITTLE BIT MORE ABOUT
HOW WE WORK WITH THAT THAT.
THAT CREATES A NUMBER FOR
DEVICES. THERE'S EVEN A BELT
THAT HAS A COMPUTER IN IT I
HAPPEN OWN THAT BUILT THAT IT'S
A VERY NICE BELT. I DON'T
ACTUALLY USE IT IT TELLS ME IF
I MEAN TOO MUCH AND I KIND OF
KNOW IF I MEAN TO MUCH. ON ON
THE- COMPUTER ABOUT TELL ME
THAT. SO WHAT I'M REALLY
DESCRIBING HERE IS SORT OF AN
EVOLVING VISION FOR HOW WE CAN.
EVER HEALTH CARE. AND THE WILL
BE TYPICALLY DELIVER HEALTHCARE
IS WE'RE ALL IN. THIS IS ROOM.
FOR ALL THE HOSPITAL OR CLINIC
I'M A PHYSICIAN I SEE PATIENTS.
I HAPPEN TO BE A GASTROENTEROL
JUST BUT WE HAVE. NOW THAT ARE
INCREASINGLY ABLE TO
COMMUNICATE WITH US NOT JUST IN
PERSON. BUT THROUGH ALL THESE
BLUETOOTH CONNECTED DEVICES
THROUGH HIPPA COMPLIANT
CHANNELS. THAT THEY CAN SHARE
THEIR DATA WITH US THROUGH OUR
ELECTRONIC HEALTH RECORD THE
PIPES ARE THERE. IT'S A TRICK
THE TECHNOLOGY HAS BECOME
TRIVIAL. THE HARD PART IS
SHOULD WE BE DOING THIS HOW
SHOULD WE BE DOING THIS AND
SHOULD WE BE PAYING FOR SUCH A
PROGRAM. BECAUSE NOW THAT
PATIENTS HAVE THE ABILITY TO
SHARE ALL THE DATA WITH US THE
QUESTION IS. WHO'S IN CHARGE OF
THAT. AND WHAT WE'RE STARTING
TO REALIZE WE NEED A NEW TYPE
OF CLINICIAN. A DIGITAL AS- THE
DIGITAL ESTAS LIKE THAT PICTURE
FROM THE TV SHOW THIS IS
SOMEBODY WHO LIVES. IN A
DIFFERENT ENVIRONMENT AND THE
DIGITAL COMMAND CENTER WHOSE
ROLE IS TO PRECISELY MONITOR
PATIENTS AND COMMUNITY WITH OF
COURSE THEIR- CONSENT
AGREEMENT. AND TO MONITOR
DIFFERENT TYPES OF DATA
BIOMETRIC PSYCHOMETRICS HOW
THEY ACTUALLY FEELING.
BIOMARKERS SO WE CAN MEASURE AT
HOME. AND THEN TO COMMUNICATE
DIRECTLY WITH THOSE PATIENTS
WHILE THE REST OF US ARE BUSY.
TAKING CARE OF PATIENTS IN
PERSON. IF SOMEBODY LOOKS LIKE
THEY NEED MY HELP PHYSICALLY
THAT'S WHEN THE DIGITAL THIS
WILL SEND THE PATIENT TO ME.
RATHER THAN SOME RANDOM PERIOD
OF TIME. THAT SORT OF
PREDETERMINED. YOU KNOW BY
MAGIC EIGHT BALL IT MAKES MORE
SENSE TO ACTUALLY. ENGAGE
PEOPLE. WHEN THEY NEED HELP
BECAUSE WITHIN TEN MILES OF
HERE RIGHT NOW THERE'S
UNDOUBTEDLY A CHILD WHO STARTED
TO GET SHORT OF BREATH AND IS
GOING TO BE IN THE EMERGENCY
DEPARTMENT TOMORROW WITH AN
ASTHMA ATTACK. WELL WHY CAN'T
WE FIGURE THAT OUT RIGHT NOW
AND DO SOMETHING ABOUT IT NOW.
AND AVOID THAT EXPENSIVE
ADMISSION. THAT COULD ACTUALLY
BE TERRIBLY POOR OUTCOMES WE
HAVE THE- ABILITIES TO DO THIS
NOW. SO THIS IS A PICTURE OF MY
OWN CLINIC AT CEDAR SINAI IT.
LIKE ANY OTHER CLINIC FROM
NINETEEN FIFTY FIVE EXCEPT FOR
THAT COMPUTER IN THE MIDDLE.
THAT IS DESIGNED BY
ADMINISTRATORS AND BILL FIRST.
PORT AND SECTIONAL NEEDS NOT TO
SUPPORT THE BIOPIC WAS. TWENTY
TWENTY PATIENTS. PROVIDE US AND
NOW FOR GOOD. NOT FOR
COLLECTING IT WHICH IS AMEND
THIS OPPORTUNITY. THERE MAY NOT
BE TREATED ALL THAT WELL. AND
THEN YOU LEAVE PEOPLE COME TO
THIS ROOM FOR VERY TINY AMOUNTS
OF TIME. BUT WHERE PEOPLE
REALLY ARE IS AT WORK AT HOME
AND SENIOR CENTERS AT THE PARK.
IF WE'RE REALLY GOING TO ENGAGE
CALIFORNIANS IN THEIR
HEALTHCARE WE HAVE TO FIND A
WAY TO GO BEYOND THE FOUR
WALLS. OF OUR PHYSICAL
ENVIRONMENTS WHERE WE ARE
CURRENTLY SITUATED ENGAGE THEM
IN THEIR REAL LIVES AND THAT'S
THE VISION OF DIGITAL HEALTH
BROADLY. AND PRECISE DIGITAL
HEALTH IN PARTICULAR. SO AGAIN
GETTING TO THE EXAMPLE THAT WAS
FUNDED FROM OUR STUDY OF A
PATIENT COMES TO SEE ME
DISAPPEARS AND COMES BACK SIX
OR EIGHT WEEKS LATER. IT'S IN
THE CRACKS IT'S IN THE MIDDLE
OR SOMEBODY HAD A HEART ATTACK
THAT NOBODY SAW COMING. AND
THIS IS OPPORTUNITY FOR REMOTE
PATIENT MONITORING. TO SORT OF
FILL IN THE BLANKS USING THIS
KIND OF. CHARACTER LIKE ERIN
WHO ACTUALLY IS THAT IS HIS
REAL NAME IS AN ACTOR THOUGH.
CAN HE USE BIOMARKER CYCLE
MARKERS ARE BIOMETRICS AND THIS
IS WHAT WE STUDIED WITH RCA PM
SUPPORTED THAT STUDY. IT WAS
REALLY A PILOT STUDY MAINLY TO
SEE IS IT EVEN FEASIBLE TO DO
THIS. IS IT TECHNICALLY CAPABLE
WE ARE TECHNICALLY CAPABLE OF
DOING THIS AND ARE THERE ANY
SINGLES IN THE NOISE THAT. WE
COULD USE ARTIFICIAL
INTELLIGENCE RATHER TYPES OF
SIGNAL SEARCH ENGINES TO FIND
PATTERNS THAT WOULD PREDICT
SOMEBODY. WHO IS ACTUALLY GONNA
GET IN TROUBLE. AND THEN WE
ALSO LOOKED AT THE HEALTH
ECONOMICS OF THIS CAN WE IT IS
WILL IT EVER EVEN BE COST
EFFECTIVE FOR THIRD PARTY PAYER
TO SUPPORT SUCH A PROGRAM SO
IT'S A PRETTY AMBITIOUS.
PROGRAM THAT WE UNDERTOOK. AND
SO WE WORKED WITH A NUMBER OF
DIFFERENT CALIFORNIA COMPANIES
TO MEASURE BIOMARKERS
BIOMETRICS AND PSYCHOMETRICS
AND SOME OF THEM ARE LISTED
THERE. DISCUSSED UP THAT BIT.
OF AT THE BASE WITH. COMPANY.
FORMAT THAT WE CAN USE ON A
RESEARCH SIDE OR THROUGH
ELECTRONIC HEALTH RECORD. ALIVE
CORE CREATES THAT SENSOR THAT I
DESCRIBED EARLIER. AND WE ALSO
WE'RE ABLE TO WORK WITH
COMPANIES NEAR TERRACE AND
THERMO FISHER. THIS IS NOT
THERE KNOWS THIS IS ACTUALLY
FDA CLEARED TECHNOLOGY WHERE
PEOPLE CAN'T TAKE A LITTLE
BLOOD SAMPLE. AND SEND IT TO US
IN THE MAIL WHERE WE CAN BE
PROTEOMICS GENOMICS LIPID OMICS
ON THESE BLOOD SAMPLES IT'S
PRETTY. REMARKABLE WORK AND WE
DON'T REALLY KNOW WHERE THE
SIGNAL MIGHT BE THAT'S GOING TO
PREDICT. WHO'S GONNA
POTENTIALLY HAVE A HEART ATTACK
BEFORE IT HAPPENS. BUT WE ALSO
CAN'T FORGET ABOUT HOW PEOPLE
ACTUALLY FEEL. OF HOW PEOPLE
ARE SLEEPING HEALTH PEOPLE
HOWEVER THEY FEEL FATIGUE TIRED
DEPRESSED SAD THESE ARE
IMPORTANT FEATURES THAT ARE
PART OF PRECISION MEDICINE
PRECISION MEDICINE IS NOT JUST
ABOUT GENOMICS. IT'S ABOUT
FULLY CHARACTERIZING PATIENTS
ACROSS BIOPSYCHOSOCIAL DOMAINS
OF HEALTH CARE. I WANT TO GIVE
YOU AN ACTUAL EXAMPLE FROM A
PATIENT IN OUR STUDY THIS IS A
DIRECT RESULT OF. OUR STUDY%
FROM THE FUNDING THAT WE THAT
WE OBTAINED. THIS IS A PATIENT
WHO WAS MEASURING HIS. HIS
HEART RATE. WITH THE SENSOR AND
ALL THIS ON THE COMPUTER TURNED
RED IT TOLD THE PATIENT
SOMETHING. WAS GOING ON THAT
SHOULD BE. IT ALL THE PATIENT
THAT HE SHOULD PROBABLY GET A
KICK CARE. AWAY HE ACTUALLY
CAME INTO OUR EMERGENCY
DEPARTMENT AND YOU CAN SEE
ELEVEN THIRTY TWO PM. THAT IS
THE SENSOR FROM AT HOME AND
THEN WHEN HE CAME TO SEE US. AT
RIGHT TWELVE THIRTY IN THE
MORNING WE FORMA. LEADING AG
THAT ACTUALLY FOUND GET. INTO
A- DANGEROUS RIP. AND HE WAS
PARTY OVERDID ACTUALLY SHORT OF
THAT OVER. AS A RESULT OF
COMING IN NOW HE MAY HAVE COME
IN ANYWAY DON'T KNOW BUT HE
CAME IN PRINCIPALLY BECAUSE THE
COMPUTER TOLD HIM. THIS IS
PACKED FULL. BENEFIT OF THE
STUDY ITSELF. AND WHEN WE LOOK
BACK IN TIME IS MORE HERE THAN
I WOULD CARE TO GO THROUGH AT
THE TIME THERE'S ALL SORTS OF
OTHER DATA WE WERE COLLECTING.
AND THE QUESTION IS CAN A
COMPUTER HELP US. FIND A SIGNAL
AND ALL THAT ALWAYS. WAS HE
SLEEPING. MORE POORLY IN THE
DAYS LEADING UP TO THIS WHETHER
OTHER FACTORS IT TURNS OUT
THERE ARE A NUMBER OF FACTORS
THAT IF WE LOOK AT CAREFULLY.
WE. CAN START TO OUT TO
EVALUATE. THIS IS ONE OF THE
MANY PAPER. NOW BEGIN PUBLISHES
IT IS ALL OF THIS THIS IS IN
JAM YEAH WHICH IS THE LEADING
INFORMATICS JOURNAL. AND REALLY
SHOWED IS THAT THIS IS FEASIBLE
THAT THE PATIENTS IN THE STUDY
WERE WILLING TO USE IN THIS
CASE TO FIT THAT. OVER 90% OF
THE PATIENTS IN THE STUDY WERE
WILLING TO USE IT. AND THAT'S
QUITE HIGHER. THAN GENERAL YOU
KNOW CONSUMERS WHO ARE USING
MAY BE WEARABLE DEVICES FOR
HEALTH AND WELLNESS PURPOSES.
WHEN A DOCTOR WORKS OF THE
PATIENT AND EXPLAINS WHY WERE
USING THIS. POWER COULD
POTENTIALLY HELP THEM WE FIND
90% OF PARENTS IN THE STUDY. SO
THIS IS MY LAST SLIDE JUST WANT
TO EMPHASIZE THAT THEIR NUMBER
OF DIFFERENT PEOPLE THAT
PARTICIPATED ACROSS DIFFERENT
DISCIPLINES THIS IS A STUDY.
THAT INVOLVED HEALTH ECONOMICS
PSYCHOMETRIC SHINS BIOMETRIC
SHINS. GENETICISTS INCREDIBLE
ARRAY OF PEOPLE FROM UCLA FROM
CEDAR SINAI. A NUMBER OF
DIFFERENT COMPANIES AND JUST
WANT TO THANK AGAIN CA EIGHT PM
FOR THE OPPORTUNITY. TO BE HERE
TODAY TO PRESENT OUR RESULTS
AND- REPRESENTATIVES ON THIS
RESEARCH. THANKS FOR MAKING SO
MUCH DOCTOR SO YOU'RE SAYING
THAT THIS FITBIT CAN DO MORE
THAN JUST WAKE ME UP IN THE
MORNING. IS THAT THAT. I'M
UNDER UTILIZING THIS TECHNOLOGY.
THAT I WANT TO SPEAK FOR YOU
BUT IT'S POSSIBLE. OKAY. OF
LET'S HEAR FROM ISABEL DORADO
WILL CIRCLE BACK IDEA OF A
COUPLE OF QUESTIONS FOR YOU
DOCTOR BUT LET'S WELCOME. IS IT.
ISABEL DERON SANDER AND
PRESIDENT OF THE LATINO CANCER
INSTITUTE AND WE WILL DO
ANOTHER SWITCH OUT I BELIEVE OF
SHE SLIDES. IT'S A GOOD
JOURNALIST I'M HERE WITH THE
SCRIPT. WHAT'S. I HAVE A SCRIPT
ARE WE ON. WE ARE ON WEST MY
TELEPHONE WAS TO MAKE. MY KEY
LIKE THIS BUTTON. IT LOOKS GOOD
NOW OKAY THANK YOU VERY MUCH
INTEREST. OF THANK YOU CHAIRMAN
MULLIN AND COMMITTEE MEMBERS
IT'S REALLY A PLEASURE TO BE
HERE WITH YOU AND TO ALL THE
GUESTS IN OUR AUDIENCE MEMBERS
AS YOU MENTIONED ON THE FOUNDER
AND PRESIDENT OF THE LATINO
CANCER INSTITUTE WHICH IS A
NATIONAL NETWORK OF LATINO
CANCER SERVICE AGENCIES BUT I'M
ALSO HERE. AS AN AWARD EAT THIS
YEAR OF A C. I. A. P. M.
MEDICINE GRANT. AND IN
PARTNERSHIP WITH THE STANFORD
CANCER INSTITUTE. I'M SPEAKING
AS A COMMUNITY PARTNER IN THIS
ENDEAVOR. I SPEAK AS A CANCER
SURVIVOR WHO NOW SPEAKS FOR
PEOPLE WHO DON'T KNOW THEY HAVE
A VOICE. AND I SPEAK AS A
CONCERNED CITIZEN WHOSE
TAXPAYER DOLLARS FUND THIS KEY
INITIATIVE THAT CAN IMPACT ALL
OF OUR HEALTH THAT OF OUR
FAMILY OR MORE BROADLY ALL OF
OUR DIVERSE COMMUNITIES. A FEW
YEARS AGO I RECEIVED A FACEBOOK
PLEA IN SPANISH FROM THE SISTER
OF A TWENTY ONE YEAR OLD. A
LATINO MEXICAN MAIL IN CHICAGO
HE WAS BATTLING FOURTH STAGE
LEUKEMIA AND HE NEEDED A
TRANSPLANT COULD I HELP.
FURTHER INVESTIGATION FOUND
THAT THE SOCIAL WORKER IN THE
PUBLIC HEALTH CARE SYSTEM THERE
HAD USED ALL OF THE BAILABLE.
AVENUES OPEN TO KEEP THAT YOUNG
MAN ALIVE. BUT HERE IS WHAT WAS
REALLY DISHEARTENING. SHE
ACTUALLY HAD FOUND A CLINICAL
TRIAL. THE YOUNG MAN WAS
ALLOWED TO GO INTO TREATMENT ON
THAT TRIAL DRUG AND AFTER A
SERIES OF ROUNDS OF TREATMENTS
HE WAS IN REMISSION. BUT
BECAUSE IT WAS NOT ACTUALLY
ELIGIBLE FOR THE TRIAL IT WAS
IN A PRIVATE HOSPITAL HE DID
NOT HAVE INSURANCE HE WAS
BOTTOM LINE REFUSED FURTHER
TREATMENT. SO I AS A SOCIAL
WORKER WHAT PROBABLY WHAT WOULD
HAPPEN IF HE RELAPSES SHE SAID
HE WOULD HAVE TO RETURN TO
AROUND OF PROBABLY INEFFECTIVE
CHEMO. UNLESS HE FOUND A
TRANSPLANT MATCH. THAT IS THE
LAST I HEARD OF THAT CASE BUT
IT HAUNTS ME TO THIS DAY.
ETHICS REGULATION RULES ALL
SEEM WRONG HERE. IT WAS FROM
THE SENSE OF HELPLESSNESS THAT
THE LATINO CANCER INSTITUTE WAS
BORN TO UNITE. LATINO AGENCIES
AMPLIFIER VOICES INFLUENCE BOTH
TREATMENT AND POLICIES THAT
CHANGE CARE OUTCOMES FOR THE
BETTER. TO IN FACT ADDRESSED
THOSE DISPARITIES THAT INHIBIT
QUALITY EQUITY AND AFFORDABLE
CARE. SO I JOINED WITH STANFORD
ON THE CIA PM GRANT WITH A VERY
LONG TITLE THAT YOU SEE HERE IF
YOU CAN EVEN READ IT. A NEW
PRECISION MEDICINE FOR THE EYES
NOW DOCTOR. LED BY ONCOLOGIST
MANALI PATEL IN OUR PREVENTION
SCIENTIST LISO GOLDMAN RUSSIA
SO FROM STANFORD. I RECALL I
ACTUALLY RECALL FORMER GOVERNOR
JERRY BROWN'S CALLED ARMS TO
BRING PRECISION MEDICINE. TO
EVERY CALIFORNIANS. WE FOCUSED
ON SALINAS AND MONTEREY COUNTY
WHERE 60% OF THE FOUR HUNDRED
THIRTY FIVE THOUSAND RESIDENTS
ARE LATINO. PRETTY RATE IS 18%
16% ARE UNINSURED ONE IN THREE
IS CONSIDERED OBESE AND 12%
SMOKE. SO THESE WERE THE
MARCHING ORDERS THAT I ACTUALLY
HEARD FROM THE CALL FOR
PROPOSAL FOR THE CIA PM.
INTRODUCED PRECISION MEDICINE
INTERVENTION AND THE LOW INCOME
UNDERSERVED COMMUNITIES. MAKE
THE STUDY OUTCOMES REPLICABLE
SHARE THE DATA SHOW THE PROJECT
TO SAVE THE MONEY AND LIVES
CONSIDER POLICIES THAT MAKE IT
SUSTAINABLE AND ADDRESS
DISPARITIES JUST A SMALL AMOUNT
OF THINGS. TO DO THAT WE
DECIDED TO LOOK AT PRECISION
MEDICINE INTERVENTIONS ACROSS
THE CONTINUUM FROM PREVENTION
WHICH IS WHERE I BELIEVE IT
SHOULD START AND NOT IN THE
FOURTH STAGE TUMOR. OF
PREVENTION EDUCATION AND
SCREENING THROUGH DIAGNOSIS AND
TREATMENT THROUGH SURVIVORSHIP
IN END OF LIFE UTILIZING AND
MEASURING THE ADDED VALUE OF
COMMUNITY HEALTH WORKERS CHW
WAS WHICH IS ONE ANSWER TO THE
WORK FORCE DIVERSITY PIPELINE.
AT LEAST IN MY ESTIMATION SO WE
LOOK AT MONTEREY COUNTY SO
PROFILE WE LOOK AT LATINOS
AGAINST NON WHITE HIS NON
HISPANIC WHITES IN TERMS OF
LONG BREAST COLORECTAL PROSTATE
WHICH IS WHERE THE GRANT ASKED
US TO FOCUS. AND WE FOUND THE
LATINOS RANK LOWER IN ALL OF
THESE CATEGORIES EXCEPT
PROSTATE CANCER. SO THEN WE
LOOKED OUTSIDE THE NORM. AND
HERE'S WHAT WE FOUND THE
DISPARITIES HERE. BESIDES
PROSTATE STOMACH LIVER PANCREAS
AND CERVIX ALL RANKED HIGHER
NOT JUST IN MONTEREY COUNTY
AGAINST NON HISPANIC WHITES BUT
AGAINST ALL OF CALIFORNIA. SO
THIS IS WHERE THE DISPARITIES
LIE AND THIS IS WHERE WE SHOULD
BE SAMPLING TESTING IN ANY
INTERVENING. YEP THE GENETIC
TESTS PANELS AGAINST WE HAVE TO
MEASURE HAVE FIFTEEN VARIANCE
BASED ON MAINSTREAM POPULATIONS
WERE MISSING A GREAT
OPPORTUNITY HERE. I HAD
TESTIFIED AT THE HEARING AT
UCLA LAST YEAR THAT IN ORDER TO
BRING PRECISION MEDICINE TO LOW
INCOME COMMUNITIES TO ALL OF
CALIFORNIA WE ACTUALLY NEEDED
TO GO THROUGH DISPARITIES. AND
WE HAD TO THE DRESS THE SOCIAL
DETERMINANTS THE BARRIERS LIKE
LOW INCOME AND LANGUAGE AND
ACCESS DISPARITIES THAT
INCLUDED UNDER RESOURCE PUBLIC
HEALTH CARE AND CLINICS SYSTEMS
WHOSE CLINICIANS. ARE EQUALLY
CHALLENGED BY WHAT TO DO WITH
PRECISION MEDICINE WHERE TO
ORDER TESTS HOW TO UNDERSTAND
WHAT THEY MEAN HOW TO GET THE
PRESCRIBED TREATMENT HOW TO GET
THE COSTS COVERED BY PAY YOURS
IN INSURERS. AND GIVEN THIS
THESE BARRIERS IN THESE
CHALLENGE HOW DO WE EVEN BEGAN
TO DISCOVER THE VARIANCE ORPHAN
GENES THAT MIGHT BE PARTICULAR.
ELLIS SO THAT WE CAN IN FACT
ADD TO INCREASE KNOWLEDGE
TESTING AND DISCOVERY. WHEN THE
PROJECT TEAM LAUNCHED THE FIRST
MEETING OF THE COMMUNITY
ADVISORY BOARD JUST THIS LAST
FRIDAY IN SALINAS WE DID AN
INSTANT POLL AND THIS WAS ONE
OF THE QUESTIONS WE ASKED OF
THEM WHAT ARE THE MOST
IMPORTANT SOCIAL DETERMINANTS
OF HEALTH THAT IMPACT CANCER IN
MONTEREY COUNTY. AND THIS WORD
CLOUD IF YOU CAN SEE A G. I
THOUGHT IT WAS GOING TO BE
BIGGER THAN THIS BUT THE YOU'LL
NOTICE THAT ACCESS AND SOCIO
ECONOMIC OR COST WERE THE TWO
STANDOUTS TWO MAJOR BARRIERS TO
QUALITY INEQUITABLE CARE THAT
IMPACT LOW INCOME RESIDENTS NOT
JUST IN MONTEREY. COUNTY BUT
ACROSS CALIFORNIA IN TWENTY
SIXTEEN WHEN I HOSTED THE FIFTH
BI ANNUAL NATIONAL AT THE NO
CANCER SOME OF THE FOCUS WAS
PRECISION MEDICINE WE SAW IT
COMING WE KNEW WE HAD TO ENGAGE
WE DIDN'T. WE WEREN'T QUITE
SURE WHAT THAT WAS GOING TO
MEAN FOR OUR POPULATIONS AND
MOST OF THE THREE HUNDRED
RESEARCHERS AND COMMUNITY
REPRESENTATIVES WHO WERE THERE
MOST OF THEM 70% LATINO CAME IN
VERY SKEPTICAL CONCERNED THAT
PRECISION MEDICINE WOULD IN
FACT INDEED EXACERBATE OUR
DISPARITIES THEY LEFT WITH A
COMMITMENT TO FIND OUT HOW TO
INCLUDE. THESE APPLICATIONS
WITHIN THEIR WORK BUT THERE'S A
LONG ROAD BETWEEN INTENTION AND
POSITIVE OUTCOMES BIOTECHNOLOGY
AND PRECISION MEDICINE ARE
CUTTING EDGE SCIENCE PROMISING
FOR MANY COMMUNITIES IF
CALIFORNIANS UNDERSTAND IT IF
THEY ACCEPTED IF THEY DON'T
FEAR IT IF THEY HAVE ACCESS TO
IT WHERE THEY CAN GET THERE AND
IF THEY CAN AFFORD. AS A MEMBER
INSTITUTIONAL REVIEW BOARD ALL
OF US RESEARCH PROGRAM AT THE
NATIONAL TUBES OF HELP I'VE
BEEN THE TWENTY SIXTEEN I HAVE
VIEWED CATIONS FROM ACROSS THE
COUNTRY INCLUDING FROM
CALIFORNIA FROM MAJOR ACADEMIC.
IT TOO SINCE THE SOURCE WAS
THAT IT WOULD. TRANSIT.
LEONARD'S FEDERALLY QUALIFIED
CLINICS TO BIOINFORMATICS
PROPOSALS AND BIG BUSINESS. TO
ME THE WEAKEST AND OR MISSING
LINK WAS A STRONG COMMUNITY
ENGAGEMENT PLAN THAT SHOWED
THEY UNDERSTOOD THE DIVERSITY
OF THE COMMUNITIES THAT
HISTORICALLY HAVE BEEN ABSENT
FOR RESEARCH AND CLINICAL
TRIALS. PARTICULARLY
COMMUNITIES WITH LANGUAGE LOW
LITERACY AND HISTORIES OF ABUSE
OF RESEARCH. AND AS I AM RE
REVIEWED SOME OF THESE
APPLICATIONS IN THEIR SECOND
AND THIRD YEARS THESE
APPLICANTS HAVE SHOWN IN FACT
THAT THEY HAVE LEARNED THE HARD
WAY. THEY HAVE LEARNED TO
FINALLY REACH INTO THESE
COMMUNITIES AND FIND PARTNERS
ESTABLISHING TRUST AND BUILDING
BRIDGES. SO I GOT BOLD AND I
GOT BRILLIANT AND I CAME UP
WITH SOME RECOMMENDATIONS. AT
THE STATE OF CALIFORNIA IN THIS
COMMITTEE WANTS TO EVEN THE
PLAYING FIELD IN BIOTECH AND
PRECISION MEDICINE YOU HAVE GOT
TO START INVESTING IN THE
COMMUNITIES THEMSELVES IN
AGENCIES THAT WORK WITH THE
UNDERSERVED IN THOSE
COMMUNITIES SO THEY CAN PLAY A
PART IN DIMINISHING THE
OPPORTUNITY GAP. FIRST OF ALL I
SAY CREATE A PEOPLE FUND FOR
EVERY TEN DOLLARS THAT YOU
INVEST IN BIOTECH RESEARCH FOR
ONE DOLLAR IN THE PEOPLE FUND.
OF SOMEONE LIKE THE CALIFORNIA
BREAST CANCER RESEARCH PROGRAM
THAT YOU MIGHT BE REFER A
FAMILIAR WITH THAT GETS OUT
TOBACCO TAX DOLLARS I'M FACT
SAT ON THEIR COMMITTEE FOR A
LONG TIME IT'S A FABULOUS
PROGRAM CALIFORNIA TAXPAYER
DOLLARS SHOULD GO BACK INTO
COMMUNITIES TO SUPPORT GAP
EDUCATION BECAUSE THIS IS WHERE
WE START. TEACHING
UNDERSTANDING OF GENETICS
DOCTORS FOR ACCESS TO GENETIC
TESTING GENETIC COUNSELING IN
MULTIPLE LANGUAGES AND THE
TRAINING OF CULTURAL HE AND
LINGUIST. COMMUNITY HEALTH
WORKERS TO HELP NAVIGATE THE
COMMUNITY. PATIENTS WHO ARE ALL
RIGHT WE'RE ALL PATIENTS WE
ONLY NAVIGATING AT SOME POINT
HELP NAVIGATE THROUGH THROUGH
THIS. THIS NEW UP PLACE THIS
NEW KIND OF MEDICINE ARE SO
THAT THEY CAN DO WELL IN THESE
PUBLIC CARE SYSTEMS. AND MY
SECOND RUN RECOMMENDATION IS
CREATE A PUBLIC ADVISORY
COMMITTEE A PUBLIC ADVISORY
COMMITTEE. TO A REWARD THOSE
DOLLARS TO COMMUNITY AGENCIES
WHO CAN DELIVER THE ABOVE
SERVICES OR INCREASE THE
CAPACITY TO DO SO WORKING HAND
IN HAND WITH ACADEMIC PARTNERS
TO DEVELOP A VALUATION PLANS.
AND MEASUREMENTS OF SUCCESS
BOUGHT INVEST. THE POWER IN THE
PEOPLE TO CHOOSE FOR THEMSELVES
WHAT THE COMMUNITY NEEDS TO DO
TO BECOME ENGAGED YOU CANNOT
HAVE ALL OF THIS BRILLIANT
MEDICINE IF YOU HAVEN'T GOT THE
PEOPLE WITH YOU. THANK YOU.
THANK YOU VERY MUCH FOR THAT SO
I'M DIGESTING THAT EVEN IS AS
WE SPEAK. I GUESS I'M STRUCK
THAT CREATING A ROBUST
COMMUNITY ENGAGEMENT PLAN
SOUNDS LIKE IT OUGHT TO BE A NO
BRAINER. IN THIS DAY AND AGE
BUT DO I LIKE YOU IT SOUNDS
LIKE IT'S NOT. AND CERTAINLY
THERE'S A THERE'S A DOLLARS
COMPONENT TO THIS AND DIRECTING
THOSE DOLLARS APPROPRIATELY
WITH UP THAT WAS UP IN MIND IN
TERMS OF ACCESS BROADLY
AVAILABLE ACROSS A
SOCIOECONOMIC BARRIERS ARE AT
THE SOCIO ECONOMIC AREAS SO IN
TERMS OF LEGAL OR REGULATORY
BARRIERS YOU MENTIONED. YOU
MENTIONED. THE VARIANCE FROM
THE GENERAL POPULATION AS
OPPOSED TO SAY A LEAD LATINO
POPULATION A THESE VARIANTS ARE
ARE TAKEN FROM THE GENERAL
POPULATION WHICH CAN ACTUALLY
BE SOMETHING OF A DISADVANTAGE
IN TERMS OF A WHAT THOSE
RESULTS MIGHT BE CAN YOU
EXPLAIN THAT JUST. A LITTLE
MORE SO I COULD BETTER
UNDERSTAND WHAT WHAT THAT MEANS
AND HOW WE MIGHT BE ABLE TO
AFFECT THAT AS A LEGISLATURE
OKAY SO NOW YOU'RE ASKING ME TO
PUT ON A SCIENCE HAND. SO I'M
GOING TO ASK MY COLLEAGUES HERE
TO CHIME IN IF I MESS UP. OF
BOTTOM LINE. THE MAJORITY OF
PEOPLE WHO'VE BEEN RESEARCH
DONE ON HOME WE HAVE
INFORMATION ARE ARE NON
HISPANIC WHITE. SO WE HAVE
UNDER OF RESEARCH COMMUNITIES
AFRICAN AMERICAN LATINO AND
ASIAN OF. POPULATIONS AND IN
FACT THAT IS SOMETHING THAT THE
THAT THE ALL OF US RESEARCH
PROGRAM WAS MEANT TO ADDRESS IT
WAS TO IN FACT BRING IN THESE
LARGE GROUPS OF UNDER RESEARCH
TO TRY TO FIGURE OUT IF. WE
KNEW WE WERE GONNA LEARN MORE
FROM THEM IN ORDER TO BE ABLE
TO TREAT BROADER A SCOPE OF
DISEASES. INSTEAD OF JUST
DEPENDENT ON THESE PARTICULAR
I'M NOT SAYING THERE AREN'T
THERE ISN'T DATA OUT THERE I
READ SOME LAB IS GOT SOMETHING
LIKE A- FIVE CONTINENTS AND-
SIX HUNDRED KINDS. THEY HAVE A
LAB FULL OF PEOPLE'S AS
SAMPLES. BUT WHERE WE'RE
TESTING. AND WHAT WE'RE TESTING
AGAINST THEY HAVE LIMITED
SAMPLES AND THOSE SAMPLES ARE
TAKEN FROM NON HISPANIC WHITES
MORE TRADITIONALLY SO I'M
SAYING IF THERE ARE DIFFERENCES
IN DISEASES. OR DIFFERENT OR
DISEASES THAT ACTUALLY IMPACT%
MORE IN THE LATINO COMMUNITY
HOW DO WE FIND THAT OUT IF WE
CAN'T MEASURE. OUR TO SELL OUR
BIO SPECIMENS AGAINST OF
AGAINST THE POPULAR UP THE
POPULATION WHERE THE CELLS OF
AND THE INFORMATION YOU HAVE
THE DATA YOU HAVE. SO IT'S JUST
SAYING WE'RE TRYING TO LEVEL
THE PLAYING FIELD OF KNOWLEDGE
SO THAT WE'RE ACTUALLY GETTING
TO THE RIGHT ANSWERS I THINK
RENDON HAS DONE A LOT OF THAT
WORK AND POSSIBLY EVEN. ADD
SOMETHING SMART. I'M NOT A
GENETICIST SO I DON'T SPEAK OUT
OF TURN I THINK IN GENERAL
YOU'RE SAYING THE NORMATIVE
SENT SAMPLES MAY NOT BE
REPRESENTATIVE OF THE GENERAL.
POPULATION SEE I TOLD YOU HE
WOULD SAY. DID DID I MAKE ANY
SENSE TO YOU. MISTER MILLER.
WITH SEVEN SO THAT I MAKE ANY
SENSE TO YOU YES YOU DID OKAY
ABSOLUTELY I WANT TO. MAKE SURE
THAT I INTRODUCED MY COLLEAGUES
ASSEMBLY MEMBER BILL QUIRK FROM
THE EAST BAY. LONG STANDING
MEMBER OF OUR SELECT COMMITTEE
ABOUT TECH WOULD WELCOME ANY
COMMENTS AT THE OUTSET. WELL
CERTAINLY THIS IS ONE OF THE
MOST EXCITING. FIELDS AND- IN A
REAL IMPORTANT SUPPORT. OF OUR
BAY AREA COMMUNITY SAN DIEGO LA
AT CETERA. I IS THIS BIOTECH
INDUSTRY. HAS A LOT TO GIVE US
I'M CERTAINLY AWARE. THAT AS
YOU WERE DISCUSSING THAT. OUR
GENETIC CHARACTERISTICS VARY A
LOT IF YOU TAKE THEM FROM ONE
PARTICULAR GROUP IT MAY NOT BE
APPROPRIATE FOR ANOTHER GROUP
SHALL WE ALL HAVE A LOT OF
DIFFERENCES I THINK WE HAVE TO
TAKE THAT INTO ACCOUNT. THANK
YOU. AS DOCTOR BILL QUIRK
LITERALLY A NUCLEAR SCIENTIST
AND OFFICIALLY ASTROPHYSICISTS
ARE. I KNEW IT I KNEW SOMETHING
LIKE THAT I KNOW NUCLEAR SIGN.
AND ROCKET SCIENCE SO ON THE
ISSUE DOCTOR AS SPIEGEL OF. BOB
DIGITAL MONITORING. IN AN
ESSENTIALLY AT YOU DIDN'T PUT
IN THESE TERMS ABOUT PREVENTING
FOLKS FROM GOING TO THE
HOSPITAL BUT ESSENTIALLY
THERE'S THIS TRACK OVER HERE
WHICH IS DIGITAL MODERATE
REMOTE MONITORING OR GOING IN
THIS YEAR. AMERICAN POSITION.
WHO MAKES THE CALL. ON WHETHER
SOMETHING CAN BE HANDLED
REMOTELY OR ITS- THE KIND OF
HEALTH SITUATION THAT OUGHT TO
BE SEEN BY A. DR THE PERSON
RIGHT SO I THINK WITH PARTLY
BEHIND THE QUESTION IS DIGITAL
HEALTH IS NOT A COMPUTER
SCIENCE IS NOT AN ENGINEERING
SCIENCE IT'S REALLY A SOCIAL
SCIENCE AT THE BEHAVIORAL
SCIENCE AND WHAT I MEAN BY THAT
IS TO MAKE THESE DECISIONS TO
ACTUALLY IMPLEMENT THIS
TECHNOLOGY. REQUIRE SHARED
DECISION MAKING BETWEEN
PATIENTS AND THEIR PROVIDERS IT
ALSO REQUIRES HAVING PROGRAMS
THAT ARE RELIABLE THEIR
EVIDENCE BASE AND THAT ARE COST
EFFECTIVE SO THERE'S A LOT OF
ASSUMPTIONS THAT GO INTO
EVERYTHING WE'RE TALKING ABOUT
TODAY THAT HAVE TO PHONE LINE
FOR ANY DECISION TO BE MADE.
NOW WHERE MOST OF THE DECISIONS
ARE BEING MADE IS AROUND HI
PROBLEMS CONDITIONS LIKE
DIABETES LIKE A HEART DISEASE
EXAMPLE THAT I PROVIDED TODAY
OR FOR HIGH STAKES SITUATIONS
LIKE PEOPLE WHO ARE LISTED FOR
TRANSPLANTATION OR REALLY
UNDERSTANDING THEY'RE- NOT JUST
DAY TO DAY BUT SOME CASES
MINUTES MINUTE VARIATIONS ARE
REALLY IMPORTANT FOR CLINICAL
CARE. SO AT THIS POINT WE DON'T
HAVE A SYSTEMATIC ANSWERED YOUR
QUESTION IT'S REALLY STILL IN
EXPERIMENTAL PURSUIT ALTHOUGH
WE HAVE SO MUCH EVIDENCE NOW
THAT WE SHOULD BE DOING THIS
THE QUESTION IS EXACTLY HOW
SHOULD WE BE DOING THIS WHO'S
IN CHARGE OF MAKING THIS THESE
DECISIONS SO NOT REALLY
ANSWERING A QUESTION I DON'T
THINK DIRECTLY. OTHER THAN
POSING MORE QUESTIONS WHICH
MAYBE IS A SIGN OF A QUESTION I
THINK THERE'S A LOT A LOT
ANSWER TO REALLY ADDRESS YOUR
QUESTION. AND I WILL. POSE TO
YOU. DOCTOR SPIEGEL A SIMILAR
QUESTION AROUND LEGAL
REGULATORY BARRIERS MEAN THE-
VERY CLEARLY THERE IS A
FINANCIAL COMPONENT HERE AND P.
R. THE STATE. IS STEPPING UP.
THE LEGISLATURE WANTS TO BE A
PARTNER WITH THE ADMINISTRATION
ON THIS. I THINK WE'RE GOING TO
HEAR FROM OUR NEXT PANEL ABOUT.
IS THE INDUSTRY AND FRANKLY
ECONOMIC AND INNOVATION
OPPORTUNITIES HERE IN THIS
SECTOR. WHICH IN TERMS OF WHAT
WE AS A LEGISLATURE CAN DO TO
ENABLE. YOU ALL TO DO THE WORK
THAT YOU DO OR TAKE THIS TO THE
NEXT STEP. WHAT ARE SOME OF THE
THINGS THAT WE OUGHT TO BE.
FOCUSING ON A MATTER FIRST
PANEL FRANKLY. AND THIS DOESN'T
ALWAYS HAPPEN IN THESE HEARINGS
BUT THERE ARE VERY CLEARLY A
COUPLE OF LEGISLATIVE IDEAS.
THAT THIS COMMITTEE CAN WORK ON
ACTIVELY AND MOVE. BUT WHAT ARE
SOME OF THE THINGS JUST FROM
YOUR- PERSPECTIVE THAT WE OUGHT
TO BE. MORE COGNIZANT OF IN
TERMS OF BARRIERS THAT EXISTS
IN OUR STATE. SO MANY BARRIERS
ANY PART OF IT. IT'S HARD FOR
ME TO KNOW. LEGISLATIVELY HOW
TO ANSWER THAT QUESTION IN SOME
OF IT IS REGULATORY REALLY
MORE. FEDERAL FDA CLEARANCE OF
DEVICES FOR EXAMPLE THIS IS A
BIG ISSUE THAT MANY OF THE-
COMPANIES HERE IN CALIFORNIA
ARE STRUGGLING WITH A WE A
HEALTH AND WELLNESS COMPANY. OR
RE TRYING TO CREATE MEDICAL
GRADE PRODUCTS AND COMPANIES
ARE REALLY DIVIDING UP
INSTITUTE. IT REALLY HELPS. TO
LIVE FOR CALIFORNIA COMPANY FDA
CLEARED APPLE SOMEWHERE IN
BETWEEN WITH FTA CLEAR DEVICES
SO PART OF IT IS REALLY FEDERAL
REGULATIONS MAKING IT EASIER TO
OBTAIN CLEARANCE WITH PREDICATE
DEVICES AND THERE'S A WHOLE.
THERE'S A WHOLE SORT OF
LITERATURE AROUND HOW BEST TO
APPROACH THAT. WITHIN
CALIFORNIA I THINK WHAT WE NEED
TO THINK ABOUT IS AS REALLY
TRAINING PEOPLE FOR THIS NEW
REALITY. WHETHER IT'S IN
MEDICAL SCHOOLS DO WE NEED A
NEW TYPE OF DISCIPLINE DO WE
NEED TO TRAIN DIGITAL LIST OF
ANY CHANGE THE CURRICULUM. IN
THE UC SYSTEM I HAPPENED TO RUN
A GRADUATE PROGAM FOCUSED
EXACTLY ON THIS TOPIC WE
ACTUALLY ARE TRAINING
TOMORROW'S HEALTHCARE LEADERS
IN THE NEW ERA. OF DIGITAL
HEALTH AND ALSO COMBINING IT
WITH KNOWLEDGE ABOUT HEALTH
ECONOMICS UNDERSTANDING THE
POLICY IMPLICATIONS OF NEW
TECHNOLOGIES AND I THINK
THERE'S- A LITERACY GAP IN THAT
AREA WE DON'T HAVE THE RIGHT
PEOPLE TRAINED UNDERSTAND
POLICY. UNDERSTAND HEALTH
ECONOMICS AND UNDERSTAND THE
SCIENCE AND BRING THEM ALL
TOGETHER TO REALLY MAKE SMART
DECISIONS FOR CALIFORNIANS AND
THAT'S PART OF WHAT WE'RE
TRYING TO DO WITH OUR MASTER'S
DEGREE PROGRAM. BUT I WISH I
HAD A MORE PRECISE ANSWER YOUR
QUESTION. NOT I WELCOME IT AND
IT'S- YOU KNOW MUCH OF THIS IS
NEW EMERGING INFORMATION I'M
I'M TRYING TO. LEARN AS MUCH AS
I CAN I MENTION TO A GROUP. WHO
WAS HERE EARLIER THIS IS VERY
MUCH YEAH WE ARE GENERALISTS
WITH THE EXCEPTION OF THE
ASTROPHYSICIST WHERE ARE OFTEN
GENERALISTS. IT IS BUILDING.
AND THERE IS A LITTLE BIT OF A
GAP ON THAT SCIENCE KNOWLEDGE.
THE FRONT ANSWER TRANSLATING
THAT INTO YOU KNOW HOW DO WE
TURN THIS INTO PUBLIC POLICY
THAT CAN MOVE THESE THINGS.
FORWARD AND IT IT JUST OBSTRUCT
YOU KNOW THE DISCUSSION AROUND
TECHNOLOGY WEARABLE TECH. THAT
DIGITAL COMMUNICATIONS AND SO
FOR JUST THAT THE- THE-
GEOGRAPHY OF CALIFORNIA ALONE
PRESENTS. CHALLENGES IN THIS
REGARD AND- RURAL HEALTH CARE
AND WORK FORCE ARE ISSUES THAT
YOU KNOW TOUCH. HEALTHCARE AND
OF RIGHTY EVER ARENA SO JUST
THINGS THAT WE NEED TO BE
MINDFUL OF THE DIVERSITY OF
CALIFORNIA NATALIE ETHNICALLY
CULTURALLY GEOGRAPHICALLY. JUST
OUR SERVICE SOME OF THE THINGS
WHICH MAKE CALIFORNIA'S A
RICHER ACTUALLY SOME OF THE
THINGS THAT ALSO. A PREVENT
CHALLENGES IN TERMS OF SERVICE
DELIVERY AND WE OUGHT TO BE
DOING EVERYTHING WE CAN TO TAKE
ALL OF THAT. INTO ACCOUNT TO
MAKE SURE THAT THERE'S ACCESS
FOR EVERYONE ACROSS THE STATE
ITSELF. I THANK YOU BOTH FOR
YOUR YES YES I THINK THIS IS
REALLY CRUCIAL BECAUSE THIS.
MIGHT AT SOME POINT IN TIME
ALSO GO TO REGULATION AND OTHER
POLICIES THAT YOU'RE GOING TO
HAVE TO CONSIDER. BECAUSE WE'RE
LOOKING AT IT FROM THE SCIENCE
SIDE BUT WHAT WE GOTTA DO IS GO
BACK AND LOOK AT IT FROM THE
CONSUMER COMMUNITY SIDE. THERE
IS EVEN FROM MY CHAIR AT THE I.
R. B. WITH THERE IS A GROWING
CONSUMER MOVEMENT ABOUT WHO
OWNS MY DATA. AND WHO HAS
PERMISSION TO USE MY DATA AND
WHEN THEY USE IT WHAT DO I GET
FROM IT. AND SO I MEAN THERE'S
EVEN AN ORGANIZATION CALLED
CITIZENS WHICH IS DEEP TEACHING
PEOPLE HOW TO GET CONTROL OF
THEIR DATA AND WHAT THEYCAN DO
WITH IT. OF AND OF COURSE FIRST
QUESTION IS ALWAYS DO YOU HAVE
THAT IN SPANISH BUT- I THINK
THAT. YOU IS LEGISLATORS. NEED
TO BE THAT CONSUMERS ARE START
IN. GIVEN ALL OF THE EXPOSURES
GIVEN. PACKING GIVEN EVERYTHING
THE CONSUMERS SHINS ADVOCATES
ALL BECOMING VERY WHERE THAT
THEIR DATA IS VALUABLE AND
WHAT'S IN IT THEY WHAT'S IN IT
FOR ME SYNDROME YES THEY WANT
TO HELP BUT THEY ALSO WANT TO
CONTROL TO SOME EXTENT SO HOW
ARE WE GOING TO CREATE THAT
PARTNERSHIP WITH THEM SO WE'RE
GOING TO HAVE. SO WE'RE GOING
TO BE ABLE TO GET THAT CONSENT
IN. AND CONSENT IN AT EVERY
STEP OF THE WAY AND NOT JUST
ONE SIGN OFF OF TEN PAGES OF
MEDICAL JARGON IT'S REALLY
CRUCIAL TO START THINKING ON
THAT LEVEL. THAT COURT JUST TO
THAT EFFECT NOW WE'VE HD A
CELL LINE THAT WAS DEVELOPED
WAY BACK WHEN IN THE SIXTIES.
AND THE WOMAN NEVER KNEW THAT
ARE CELLS WERE TAKEN THAT THEY
WERE AFRICAN AMERICAN FAMILY
HENRIETTA LACKS YES EXACTLY
WOMAN NEVER KNEW THAT OUR
SHELLS WERE TAKEN. HER
DESCENDANTS THAN SOME FIFTY
YEARS LATER BEING TOLD THAT
THEY WERE TAKEN HAVE THEY WERE
USED AND. IF YOU'RE NOT USED TO
SCIENCE THIS IS VERY DISTURBING
SO. YOU KNOW THE RIGHT TO YOUR
BODY WHICH CAN BE SAMPLED AND
PERHAPS IS IMPORTANT FOR
SCIENCE. YOU DEFINITELY HAVE TO
HAVE. A VERY STRONG CONSENT AND
THEN THERE'S THE QUESTION IF
SOMEBODY'S MAKING MONEY OFF IT
DO YOU GET MONEY BACK. THESE
ARE ALL QUESTIONS THAT THAT
PEOPLE NEED TO GET ANSWERS TO
AND THAT WAS WHY PROPOSED THE
PEOPLE FUND NOT SO PART OF THE
ANY OF THE WE GOT ALL THE
REVENUES OR ANYTHING IT'S GOING
TO COME BACK TO THE PEOPLE SO
THAT THEY CAN ALSO DECIDE WHAT
THEY WANT TO DO AND HOW THEY
WANT TO. I JUST THINK IF YOU
SHOW IF YOU SHOW THERE'S EQUITY
AND IF YOU CHAU THERE'S
ENGAGEMENT IT'S NOT TRYING TO
RUN AWAY WITH YOUR STUFF BUT IN
FACT TO SHARE IT WITH YOU FOR
THE GREATER GOOD I THINK MOST
PEOPLE RESPOND THAT WAY BUT
YOU'RE ABSOLUTELY RIGHT
SOMETHING'S GOING TO HAVE.
LOOKED AT. AND I THINK YOU LOOK
VERY SMART. PUBLIC IF YOU. LEAD
THE CHARGE. THANK YOU. THANK
YOU IS ABOUT IRAN DR THANK YOU
BOTH VERY MUCH I'M SORRY THIS
BEFORE YOU BEFORE YOU DEPART
JUST A QUICK MISS WALDRON
CLOSING YOU KNOW WHEN WE DEAL
WITH ALL THE DIFFERENT ISSUES
REGARDING HEALTH IT KIND OF
COMES DOWN TO EVENTUALLY THAT
THE PRIMARY CARE PHYSICIAN IS
REALLY THE FIRST LINE OF
CONTACT. YOU KNOW WITH THE
PATIENT AND- LOSE SOME OF THE
THINGS WE DEAL WITH IN THE
LEGISLATURE IS. YOU KNOW HOW
CAN WE GET. MORE PRIMARY CARE
PHYSICIANS TO BE AWARE OF
BECAUSE THEY'RE SO BUSY THEY'RE
SEEING YOU KNOW SO MANY
PATIENTS THEY DON'T HAVE TIME
ALL THE TIME. TO KEEP UP WITH
ALL OF THE THINGS AND YOU KNOW
NO ONE REALLY DOES IT'S JUST
THE MOVING ALL THE TIME THAT'S
WHY WITH THE NAVIGATORS. TO
HELP YOU KNOW EVEN JUST. TRYING
TO GET THROUGH THE SYSTEM AS IT
IS. BUT YOU KNOW WE DEAL WITH
TRYING TO INSTITUTE NEW
CURRICULUM FOR PRIMARY CARE OR
ONGOING TRAININGFOR
PHYSICIANS. AND WE ALWAYS HIT
THE STUMBLING BLOCK OF WHAT WE
CAN'T. MANDATE THE MEDICAL
BORDER WE CAN YOU KNOW WE CAN.
RECOMMEND YOU KNOW AT SOME
POINT THOUGH. HOW DO WE BRING
IN THE MEDICAL BOARD SO THAT
THEY'RE UP TO DATE ON ALL OF
THIS. IT SEEMS TO BE WHEN YOU
WERE SPEAKING DOCTORS KIND OF
CAME TO MIND THAT THAT THAT
WOULD BE. SEVEN MOMENT OUT THE
PREACHER VERY BRIEFLY I MEAN I
HAVE TO BE AN ASSISTANT DEAN AT
THE DAVID GEFFEN SCHOOL OF
MEDICINE AT UCLA AND YOU KNOW
TRAINING PRIMARY CARE
PHYSICIANS IS A HUGE ISSUE FOR
ALL OF US IN AND MEDICAL
SCHOOLS. THAT'S WHERE THE
RUBBER MEETS THE ROAD WITH
HEALTH CARE WE KNOW THAT THAT'S
FOR ACCESS BEGINS AND WE'RE
LOSING SO MANY QUALITY STUDENTS.
PARTICULAR FROM THE BAY AREA
STANFORD FOR RECESS SOME OF THE
STUDENTS ARE LEAVING MEDICINE
COMPLETELY AND GOING TO WORK
FOR START UP COMPANIES AND
THERE'S LIKE A BRAIN DRAIN IN A
WAY FOR SOME OF THE VERY BEST
PARTICULAR UP HERE AND MY
THOUGHT IS. WE NEED TO REDEFINE
PRIMARY CARE AS THE PIONEERING
SPECIAL TO WHERE THEY ARE THESE
ALL THESE THINGS I TALKED TO
TODAY ALL THE TECHNOLOGIES
THEY- SHOULD READ I DON'T.
RECALL SOME OF THESE GREAT
STUDENT. AND FEEL LIKE A AVE
CAN ACTUALLY USE THEIR SKILLS
AND PROGRAMMING AND DIGITAL
LITERACY AND IMPLEMENT THEM IN
IN WAYS THAT WE DON'T CURRENTLY
EXISTS THAT'S WHY WE REALLY. DO
NEED TO COME AROUND DID HEALTH
AND THE NEW SPECIALIST PROBLEM.
CALLED THE DIGITAL AND THAT IN
BACK. A LOT OF INTEREST IN.
ARENA ONE THINGS WERE TO DO
WITH OUR GRANT IS EVEN AS WE'RE
TRYING TO EDUCATE THE COMMUNITY
WERE ALSO TRYING TO EDUCATE THE
CLINIC FOR THE POSITIONS. AND
THE CLINICIANS SO THAT THEY CAN
SPEAK TOGETHER AGAIN SO YES AND
WE'LL LET YOU KNOW. WHAT
OCCURRED BECAUSE I BUT I HADN'T
THOUGHT ABOUT THE MEDICAL
ASSOCIATION MAYBE WE NEED TO
BRING THEM IN AS A- IS ONE OF
OUR VICE PARTNERS. THERE'S AN
OPPORTUNITY GREAT THANK YOU
BOTH VERY MUCH. AND WE WILL
TRANSITION TO OUR FINAL AGENDA
ITEM. DR LORI DOCTOR LAURA
JULIAN FROM. MY HOME TOWN
COMPANY GENENTECH. INDUCTOR
ELEANOR DUFF FROM ASTRAZENECA
ALSO WITH A PRESENCE IN SOUTH
SAN FRANCISCO THANK YOU BOTH
FOR JOINING US TODAY AND WE ARE
GOING TO BE TALKING ABOUT THE
LIFE SCIENCES INDUSTRY
PERSPECTIVE AND- WITH SOME OF
THAT GROWTH OPPORTUNITIES FROM
AN ECONOMIC AND BUSINESS
STANDPOINT ARE. SPECIFIC TO
PRECISION MEDICINE SO THANK YOU
BOTH FOR BEING HERE I THINK NOT
SURE IF WE HAVE A. NO DECKS TO
LOAD HERE. EXCELLENT SO WE'LL
START WITH DOCTOR LORD JULIAN
GENENTECH PRECISION MEDICINE
FOR MULTIPLE SCLEROSIS. THANK
YOU VERY MUCH THANKS TO
ASSEMBLYMAN MULLIN AND THIS
COMMITTEE FOR HAVING ME HERE
TODAY AND TO NOT TACK I SUPPORT
RESEARCH AIM TO UNDERSTAND HOW
DISEASES OF ALL OF HOW TO
ADVANCE HEALTH CARE DELIVERY
AND IMPORTANTLY HOW OUR
MEDICINES CAN BE USE MOST
APPROPRIATELY. I'M ALSO THE
GENETIC LEAD FOR A PROGRAM
THAT'S CALLED PROJECT FLOOD
LIGHT SO ON MY NUMBER OF OUR
PREVIOUS SPEAKERS HAVE ALREADY
ALLUDED TO DIGITAL TECHNOLOGY
AND HOW WE CAN LEVERAGE THIS TO
TRY TO ACHIEVE OUR GOAL AND
PRECISION MEDICINE I'M A TALK A
LITTLE BIT ABOUT. OUR
ASPIRATION IN THIS AREA WE'VE
DONE A PROJECT WHEN QUIRK
COLLABORATION WITH UCSF AND
SUTTER HEALTH RESEARCH
DEVELOPMENT AND DISSEMINATION
GROUP AND THIS WAS MADE
POSSIBLE BY THE CIA PM. SO FOR
MORE THAN FORTY YEARS GENENTECH
IS A MEMBER OF THE ROAD GROUP
HAS BEEN A LEADING BY A
TECHNOLOGY COMPANY DEDICATED TO
THE PURSUIT OF SCIENCE TO
ADDRESS UNMET MEDICAL NEEDS FOR
THOSE WITH SERIOUS AND LIFE
THREATENING CONDITIONS
GENENTECH HAS ITS U. S.
CORPORATE HEADQUARTERS AND
SOUTH SAN FRANCISCO WHICH OF
COURSE IS AN ASSEMBLY MEMBER
ONCE DISTRICT. AND WE AIM TO
CONTINUE TO ADVANCE THE SCIENCE
WITH OVER FOURTEEN THOUSAND
EMPLOYEES AND A PRODUCT
PORTFOLIO OF OVER FORTY FDA
APPROVED MEDICINES INCLUDING
THOSE. THAT TREAT CANCER
HEMOPHILIA AND MULTIPLE
SCLEROSIS. I MASSES AN
INTERESTING CONNECTION IT OFTEN
STRIKES IN THE PRIME OF LIFE
WHEN PEOPLE ARE STARTING THEIR
CAREERS. STARTING THEIR
FAMILIES IT'S A LEADING CAUSE
OF NEUROLOGIC DISABILITY AMONG
YOUNG AND MIDDLE AGED ADULTS.
I'M IT IS AT MOST COMMONLY
DIAGNOSED BETWEEN THE AGES OF
TWENTY AND FIFTY. IT AFFECTS
MORE WOMEN WOMEN THAN MEN AND
IT'S A CHRONIC LIFELONG
DISEASE. WE THINK THAT ABOUT.
ONE MILLION INDIVIDUALS IN THE
U. S. LIVE WITH MULTIPLE
SCLEROSIS AND PERHAPS THAT
LENDS TO ABOUT A HUNDRED
THOUSAND. INDIVIDUALS HERE IN
CALIFORNIA WITHOUT MASS.
IMPORTANTLY IN THE SPIRIT OF
AWARENESS WE THINK THIS BODY
FOR SUPPORTING THE SENATE
RESOLUTION EIGHTY SIX. BY
SENATOR JERRY HILL IN TWO
THOUSAND EIGHTEEN THAT
PROCLAIMS MARCH TWENTY EIGHTH
IN PERPETUITY AS PROGRESSIVE
MULTIPLE SCLEROSIS DAY. SO MS
CAN IMPACT ANY OF THE FUNCTIONS
OF OUR DAILY LIFE THAT THIS
INCLUDES WALKING COORDINATION
HAND FUNCTION THINKING SKILLS
AND VISION. THE PROGRESSION THE
SEVERITY OR THE IMPACT OF THIS
DISEASE WILL DIFFER FROM
PATIENT TO PATIENT AND CANNOT
YET BE PREDICTED. SO WHILE
THERE HAVE BEEN SIGNIFICANT
ADVANCES AND HOW WE TREAT EN
MASSE EXISTING TOOLS TO MEASURE
THE DISEASE HAVE NOT ADVANCED
IN DECADES. SO THE TOOLS THAT
DO EXIST TEND TO REMAIN IN THE
RESEARCH DOMAIN AND FEW OF THEM
MAKE IT INTO THE CLINIC OR VIEW
OF THE MAKE IT ACCESSIBLE TO
THE MAJORITY OF INDIVIDUALS. MS
PATIENTS ALSO TEND TO VISIT
THEIR NEUROLOGIST. PERHAPS ONCE
OR TWICE A YEARSOMETIMES FOR
FIFTEEN MINUTES SO I GIVE THE
NEUROLOGIST LIMITATION AND
REALLY APPRECIATING THE FULL
SCOPE. OF THEIR FUNCTIONING THE
FULL SCOPE OF HOW THIS DISEASE
IMPACT THEIR LIFE. SO IN
RESPONSE TO THESE CHALLENGES
ARE TEAM AFTER SELVES. WHAT IF
WE COULD BETTER DETECT EARLY
SIGNS OF PROGRESSION BEFORE
PATIENT BECOMES DISABLED. WHAT
IF WE COULD CAPTURE CHANGES IN
COORDINATION OR WALKING ABILITY
BEFORE THAT PATIENT MIGHT NEED.
A CANE OR WALKER OR EVEN A
WHEELCHAIR. SO THIS INFORMATION
WHAT'S SUPPORT PROVIDER TO
RECOGNIZE PROGRESSION IT WOULD
GIVE THEM A GREATER
UNDERSTANDING AND THEY PERHAPS
SHOULD BE EMPOWERED TO PURSUE
THE BEST TREATMENT POSSIBLE.
THIRTY CHRIS SEDATE TALKED
ABOUT DIGITAL TOOLS IN THE
PROMISE OF THESE TOOLS SO I
THINK THIS TOPIC IS TIMELY
DIGITAL MEDICINE REFERS TO THE
TOOLS THAT SUPPORT HEALTH
RSEARCH BUT ALSO THE PRACTICE
OF MEDICINE. THESE TOOLS CAN BE
ADMINISTERED THROUGH A SMART
WATCH SMARTPHONE OR OTHER
WEARABLES THAT WITHOUT REALLY
ARE TODAY. LATE IN THE DIGITAL
TOOLS AN ACT THAT'S AND
RESEARCH DEVELOPMENT IT'S
DELIVERED ON A SMARTPHONE. AND
IT'S DESIGNED TO MONITOR AND
MASS RELATED DISEASE
PROGRESSION AND DISABILITY OVER
TIME. IT'S DESIGNED TO DO THIS
IN BETWEEN CLINIC VISITS TO
GIVE PATIENTS A BETTER
UNDERSTANDING OF THEIR OWN
DISEASE. AND GIVE THE PATIENT
THE ABILITY TO TRACK THEIR OWN
I MUST OVER TIME. AND SHARE
THEIR RESULTS WITH WHOM THEY'D
LIKE TO THERE COULD BE THEIR
HEALTHCARE TEAM IT COULD BE
THEIR PROVIDER CAN BE THERE
CARE PARTNERS. IN A FEW MINUTES
FOR MY CHIPS CAN BE USED TO
MEASURE COGNITION UPPER CHARITY
FUNCTION IN WALKING. THESE ARE
FUNCTIONS THAT WERE CHOSEN TO
MEASURE BECAUSE THEY ARE
IMPACTED BY A MASS. THE REALLY
IMPORTANT FOR THE DOCTOR TO
MEASURE THEIR FEASIBLY MEASURED
BY THE DEVICE AND THEY'RE VERY
IMPORTANT OF PATIENTS WHEN WE
SEE DECLINES IN THESE AREAS.
THOSE ARE THE PATIENTS THE TEND
TO LEAVE THE WORK FORCE FOR
EXAMPLE. OBVIOUS YOUR HAND
FUNCTION. TO THE- THAT'S A RISK
FOR WHO MIGHT AND THEN HAVE
PROBLEMS ON THE JOB. AND MAY
AND MAY THEN HAVE HAVE MORE
PROBLEMS WORKING. THERE OVER A
HUNDRED AND FIFTY THOUSAND AT
LEAST HEALTH RELATED APPS. VERY
FEW OF THEM MAKE IT FROM
DEVELOPMENT IN THIS TECHNOLOGY
SECTOR. INTO A CLINIC. THE
TECHNOLOGIES COURSE MUST SOLVED
A PROBLEM FOR THE PATIENT. BUT
THEY ALSO MUST SOLVE A PROBLEM
FOR THE WORK FORCE OR THE WORK
FLOW OF A PROVIDER. AND ALSO
HEALTH SYSTEM. SO THAT THE
OPPORTUNITY FOR GENENTECH AS WE
DEVELOP THIS APP. TO PARTNER
WITH CENTER HEALTH OF THIS
PROJECT. REALLY ALLOWS FOR US.
TO WORK AS TWO TEAMS TO CO
CREATE THE SOLUTION. AND
PERHAPS ENSURE THAT THIS
TECHNOLOGY CAN BE SUCCESSFULLY
INTEGRATED INTO REAL WORLD CARE.
HEALTH IS MADE REALLY
INCREDIBLE STRIDES IN
INCORPORATING TECHNOLOGY TO
IMPROVE NEUROLOGY CARE THEY'VE
DEVELOPED A PLATFORM THAT'S
CALLED NEURO SHARE AND IT'S
REALLY IT'S SUPPOSED TO PROVIDE
A ONE STOP VISUALIZATION. OF
THE INFORMATION A DOCTOR NEEDS
TO MAKE A DECISION IT MIGHT
HAVE THEIR BRAIN MRI MIGHT HAVE
THEIR TREATMENT RESULTS AND THE
VISION IS THAT BLOOD LIKE DATA
CAN BE INCORPORATED INTO THAT
PLATFORM. SO THAT AFTER CAN
MAKE DECISIONS BASED ON
CLINICAL DATA DIAGNOSTIC DATA
BUT ALSO PATIENT CENTERED REAL
WORLD DATA. ULTIMATELY THIS
COULD PROVIDE A MORE HOLISTIC
VIEW. IT BECOMES A MODEL FOR
BETTER DATA IT'S NOT. BETTER
DATA IT DOESN'T ALWAYS MEAN
MORE DATA IT'S REALLY MAKING
THAT DATA MORNING MEANINGFUL.
OUR FIRST STEP IN THE PROGRAM
WAS TO INTEGRATE INTO THE
CLINIC AND GET FEEDBACK WE
NEEDED TO HEAR FROM PATIENTS
WHETHER WORDS WAS THIS TOOL
REASONABLE WHETHER FEASIBLE WAS
IT ACCEPTABLE. WE WANTED TO
MAKE SURE WE COULD ENSURE THAT
PATIENTS UNDERSTOOD THE WHY.
WHY WOULD WE WANT YOU TO DO
THIS THE HOUSE BEHIND THE TOOL
AND WE'RE CURRENTLY LOOKING AT
THE PERSPECTIVES OF THE
NEUROLOGIST AS WELL. SO THE CI
A PM PROVIDED THE FUNDING TO
DEVELOP AND TEST NUR SHARE AND
ALSO TO START TO INTEGRATE
FLOOD LIGHT INTO THIS PICTURE.
THE DEVELOPMENT OF FLOOD LIGHT
IS SUPPORTED BY A GLOBAL
PROGRAM AND RUSHED IN AND TACK
IT'S ACTIVE IN MORE THAN THIRTY
COUNTRIES OUTSIDE OF OUR OWN
CLINICAL TRIALS. TO FULLY
VALIDATE ALL THE PARTNERSHIP
WAS THAT OUR HEALTH IS THE
FIRST COLLABORATION IN THE
WORLD. A TEST THE VALUE OF THIS
TOOL SO AT THE END OF THE DAY.
WELL NO NOT ONLY THAT THIS TEST
IS VALID. BUT THAT IT'S
RELEVANT RIGHT AND SO. THESE
ARE THE TYPES OF INITIATIVES
NECESSARY TO BRING AN
INNOVATIVE PILOT. INTO A
SCALABLE HEALTH CARE SOLUTION.
THIS COLLABORATION WAS BEEN
CONSIDERED BY OUR GLOBAL
ORGANIZATION AS A BEST
PRACTICE. IT BRINGS TOGETHER
INDUSTRY HEALTH SYSTEMS IN
ACADEMIA TO CREATE A BESTING
CLASS HEALTH. HERE IN
CALIFORNIA. AT GENENTECH WE
IMPROVE HOW WE MEASURE DISEASE
THAT IMPROVES OUR OWN ABILITY
ABILITY TO DO SMARTER MORE
EFFICIENT RESEARCH AND
DEVELOPMENT. TO DEVELOP THE
POTENTIAL MEDICINES TO TREAT
DISEASE BUT IF WE CAN IMPROVE
MEASURES OF DISEASE IN A WAY
THAT COULD ALSO BE INTEGRATED
INTO CARE. IT HOLDS THE PROMISE
OF IMPROVING THOSE. LIVES OF
INDIVIDUALS LIVING WITH MS. MS
OF THE DIFFICULT DISEASE FOR
ANY INDIVIDUAL TO BEAR. AND THE
OPPORTUNITY TO PARTNER WITH
LEADING HEALTH SYSTEMS HERE IN
CALIFORNIA HAS BEEN MADE
POSSIBLE FOR BY THE CIA PM. AS
ADVANCED OUR OWN ABILITY TO DO
NOW IT PATIENTS NEED NEXT. SO
WE CONTINUE TO AND INNOVATE ON
THE DEVELOPMENT OF MEDICINES
FOR SERIOUS AND LIFE
THREATENING CONDITIONS. AND
ADVANCED TOOL TO UNDERSTAND
THESE CONDITIONS. DIGITAL
HEALTH SOLUTIONS PROMISED TO
CHANGE THE WAY HEALTHCARE IS
DELIVERED AND OF COURSE ACCESS
TO THESE MISSIONS. IT IN AN
MORE HANDS THAN EVER BEFORE.
HOWEVER ACT THE TECHNOLOGY IS
REALLY ONLY PART OF THE
SOLUTION. ENGAGEMENT FROM THE
HEALTH CARE ECOSYSTEM CAN
ENSURE THAT A PATIENT IS ENGAGE
BUT ALSO THAT THEIR DATA IS
VALUED. AND THIS CAN SUPPORT
SCALABILITY WHICH ULTIMATELY
HOPEFULLY WILL REDUCE COSTS AND
IMPROVE POPULATION HEALTH.
CHALLENGES WILL PROBABLY
CONTINUE TO RISE AROUND VARYING
PRIVACY LAWS VERY ENGAGEMENT
FROM PATIENTS PROVIDERS AND
PAYERS WE ARE COMMITTED TO THIS
PROGRAM. WE'D BE HAPPY TO
CONTINUE TO WORK WITH THE
MEMBERS OF THE COMMITTEE ON
WAYS TO CONTINUE TO ADVANCE
PRECISION MEDICINE. AND I'M
GRATEFUL FOR THE OPPORTUNITY TO
BE HERE TODAY. THANK YOU SO
MUCH AND SO THE APP IS THAT THE
FDA APPROVAL PROCESS OR SENATE.
THAT'S A DIFFERENT ANIMAL
ALTOGETHER HERE WHAT'S THAT.
RULE PROCESS YEAH IT'S A VERY
GOOD QUESTION IT'S- TODAY IT'S
A RESEARCH TOOL WERE EXPLORING
KIND OF WHAT'S THE REGULATORY
PATHWAY. YOU KNOW CERTAINLY
HAVING SOME FTA REGULATORY.
WHEN WE HELPFUL FOR YOU KNOW
INDUSTRY IN PURSUING OUR
CLINICAL TRIALS PROGRAMS TO
WORK KIND OF SKIPPING THAT OUT
RIGHT NOW BUT TODAY. IT'S AS A
RESEARCH TOOL. IN YOU KNOW
WE'VE BEEN TALKING TODAY ABOUT
ACCESS AND- THIS COMMITTEE I
THINK AT SOME POINT WE'LL WE'LL
DO A US HEARING SPECIFICALLY
AROUND. BROADENING ACCESS TO
CLINICAL TRIALS. AND
DEMOCRATIZING THAT PROCESS
SHALL WE SAY SO WE DON'T HAVE
A- CLINICAL TRIAL PROCESS FOR
THE 1% OR THOSE WHO ARE WIRED
IN AND CONNECTED. TO THE RIGHT
PEOPLE. TO MAKE A CALL SO TO
SPEAK TO GET THEM INTO A
CLINICAL TRIAL. SO HOW DO WE
ENSURE THAT THIS IS THIS KIND
OF TECHNOLOGY IS BROADLY
ACCESSIBLE BROADLY AVAILABLE
WHAT CAN. A COMPANY LIKE
GENETIC WITH THE RESOURCES IT
HAS. YOU KNOW HOW DO YOU ENSURE
SOME OF THOSE GOALS ARE MET
YEAH I THINK THANKS FOR THE
QUESTION I MEAN I THINK THAT.
YOU KNOW THAT THIS IDEA ON
ACCESS TO RESEARCH AND CLINICAL
TRIALS IS CRITICAL AND I WOULD
SAY THAT. YOU KNOW AT GENENTECH
FOR WE'RE COMMITTED TO ENSURING
DIVERSITY INCLUSION OUR TRIALS
AND THAT STARTS WITH NOT ONLY.
KIND OF THE INCLUSION EXCLUSION
CRATER TRIALS BUT IT STARTS
WITH THE ACCESS TO TRIAL
CENTERS IT STARTS WITH ACCESS
FOR A BROAD RANGE OF PATIENTS
TO THE DOCK IS IT'S WITH.
MAKING TRIAL REASONABLE FOR
PATIENTS TO MANY PEOPLE. CAN'T
TAKE TIME OFF WORK CAN'T FIND
TELL KAREN CAN'T TRAVEL TO FOR
EXAMPLE YOU KNOW A CENTER OF
EXCELLENCE WHERE. KEY CLINICAL
TRIALS SO HOW CAN WE MAKE THESE
TRIALS MORE ACCESSIBLE FOR MORE
PEOPLE AND IT'S FOCUSED ON THE
INCLUSION EXCLUSION CRITERIA
BUT IT'S ALSO FOCUSED ON. YOU
KNOW THE SOUP TO NUTS PROCESS
OF A CLINICAL TRIAL WHERE THEY
SIT WHERE THEY RESIDE IN HOW
THY'RE CONDUCTED. YOU KNOW IF
WE'RE SUCCESSFUL FLOOD LIKE
COULD BE A TOOL FOR YOU KNOW
SIMILAR TOOLS TO REDUCE THE
NUMBER OF VISITS THAT A PATIENT
WOULD NEED TO TRAVEL TO A
CENTER FOR EXAMPLE. MANY
INDIVIDUALS CAN'T PARTICIPATING
TRIALS BECAUSE OF THE AND- SO
WHILE THEY'RE A GREAT
OPPORTUNITY FOR PATIENTS ARE
ALSO A BURDEN BECAUSE IT MAY
REQUIRE. TRAVEL TO SAN
FRANCISCO FINDING COVERAGE FOR
THEIR WORK AND SO. WHAT IF WE
COULD LEVERAGE THAT KNOWLEDGE.
LET TO DETER REMOTELY. WOULD BE
VIABLE AND REASONABLE FOR A
CLINICAL TRIAL. THAT'S A GREAT
AMBITION FOR US AND I THINK
THAT IT WOULD ALSO INCREASE THE
POSSIBILITY. THAT MORE PATIENTS
COULD BE PART OF THE READ
RESEARCH ECOSYSTEM. THANK YOU
DOCTOR LARGE AWAY LET'S TURN TO
DOCTOR ALLEN ARE TOUGH
ASTRAZENECA THANK YOU VERY MUCH
FOR BEING HERE MISTER CHAIR
THANK YOU VERY MUCH FOR THE
OPPORTUNITY TO REPRESENT
ASTRAZENECA GLOBAL BY
PHARMACEUTICALS COMPANY. THAT
IS INVOLVED IN THE DISCOVERY
THE DEVELOPMENT AND THE
DELIVERY OF LIFE CHANGING AND
IN MANY CASES LIFESAVING
MEDICINES AROUND THE WORLD OF
COURSE YOU'LL BE AWARE THAT WE
HAVE ON OUR INDIE HUB IN THE
BAY AREA SO VERY INVESTED IN
CALIFORNIA. IT'S ALWAYS NICE TO
GO LAST AND RECOGNIZE THAT MY
REMARKS ARE ALIGNED WITH
EVERYBODY WHO'S GONE BEFORE ME
SO I'M LOOKING FORWARD TO
CONTINUING SOME OF THE THEMES
THAT YOU'VE HEARD TODAY AROUND
THE IMPORTANCE OF PARTNERSHIP.
IN RECOGNIZING THE POTENTIAL IN
THE PROMISE OF PRECISION
MEDICINE. I AM AS THAT MY
OPENING SLIDE INDICATES
PRECISION MEDICINE PRESSURES
ANNIKA IS VERY MUCH IN OUR DNA
WE HAVE BEEN AT THE FOREFRONT
OF DRIVING PRECISION MEDICINE
ALONG WITH MY COLLEAGUES
ANOTHER INDUSTRY AND OTHER
FORMS COMPANIES. SINCE THE
EARLY. NINETEEN SEVENTIES WITH
THE BUILDING OF MARKS WHICH
MIGHT HAVE BEEN ONE OF THE
FIRST PRECISION MEDICINES A
DRUG THAT IS STILL IN USE TODAY.
FOR HORMONE RECEPTOR POSITIVE
BREAST CANCER. SINCE THAT TIME.
OUR PIPELINE HAS CONTINUE TO
FOCUS ON PRECISION MEDICINE
THERE'S A LOT OF DATA ON THE
SLIDE I DON'T REALLY WANT TO
FOLLOW THROUGH AND ALL OF THAT
BUT I THINK THE NUMBER THAT IS
KEY TO LOOK AT HERE IS THE 90%
NUMBER CURRENTLY 90% OF THE
MOLECULES IN OUR CLINICAL
DEVELOPMENT PIPELINE ARE
DESIGNED AND BUILT WITH
PRECISION MEDICINE IN MIND IT
IS THE FUTURE WE ARE ALL MOVING
AWAY I THINK FROM A ONE SIZE
FITS ALL APPROACH TO MEDICINE.
AND IT'S VERY HEARTENING TO
HEAR ALL OF OUR COLLEAGUES
AROUND THE TABLE AND EARLIER
TODAY TALKING ABOUT THE
DIFFERENT WAYS THE CALIFORNIA
IS BEST A GAPING BEYOND THE
DEVELOPMENT OF MEDICINES THE
ABILITY TO BRING PRECISION
MEDICINE TO THE FOUR.
ASTRAZENECA WE ARE FOCUSED ON
THREE MAIN THERAPY AREAS.
CARDIOVASCULAR RENAL AND
METABOLISM DISEASES.
RESPIRATORY DISEASES AND
ONCOLOGY AND FOR THE PURPOSES
OF THE REST OF MY- TESTIMONY
TODAY I'LL BE FOCUS IN
ONCOLOGY. SO WHEN WE LOOK AT
SOME OF THE OTHER NUMBERS ON
THE SLIDE ONE ANOTHER NUMBER
THAT I THINK IS KEY FOR YOU TO
LOOK AT IS THE TWENTY TWO
DIAGNOSTIC. TESTS IT'S K FOR
YOU TO UNDERSTAND THIS NUMBER
BECAUSE- WE DON'T MAKE
DIAGNOSTIC TESTS WE MAKE
MEDICINES. ASTRAZENECA ONLY
MAKES MEDICINES AND SO TO IN
ORDER TO CREATE PRECISION
MEDICINES. WE HAVE TO PARTNER
WITH OTHER COMPANIES WERE
CREATING THE DIAGNOSTIC TESTS.
YOU CAN SEE A NUMBER THERE ARE
A HUNDRED EIGHTY FIVE MILLION
INVESTED IN DIAGNOSTIC
PARTNERSHIPS SINCE TWO THOUSAND
FOURTEEN. THE PURPOSE OF
SHARING THAT NUMBER IS TO
CONFIRM REITERATE A LOT OF
WHAT'S ALREADY GONE BEFORE US
THE PROMISE OF PRECISION
MEDICINE. IS BASED ON
PARTNERSHIP AND COLLABORATION.
THAT IS HOW WE CAN DELIVER WHAT
IS EXTREMELY COMPLEX SCIENCE TO
THE COMMUNITY WE'VE HEARD
TESTIMONY FROM OTHERS TALKING
ABOUT LEVELING THE LEVELING THE
PLAYING FIELD. AGAIN WE ARE ONE
PART OF THE ECOSYSTEM AND
DEVELOPING MEDICINES BUT IN
ORDER TO LEVEL THE PLAYING
FIELD WE NEED TO CONNECT WITH
EVERYBODY. ASTRA'S TO RECOGNIZE
SOME TIME AGO THE IMPORTANCE OF
PARTNERSHIPS AND LEVELING THE
PLAYING FIELD. AND SO JUST WITH
IN CALIFORNIA WE HAVE INITIATED
SOME VERY LARGE PARTNERSHIPS
WITH ACADEMIC CENTERS WITH
CANCER CENTERS AND WITH OTHERS
UNFORTUNATELY I CAN'T GET INTO
THE DETAILS OF WHO THESE ARE
THESE PARTNERSHIPS ARE WITH
TODAY BECAUSE WE'RE UNDER
CONFIDENTIALITY AGREEMENTS. BUT
WE RECOGNIZE THAT WE CAN'T DO
THIS ALONE WE HAVE TO PARTNER
WITH OTHERS THAT THESE ARE BIG
PROGRAMS THESE ARE VERY
SPECIFIC CENTERS HOW CAN WE
TAKE THAT IDEA PARTNERSHIP AND
BUILD IT EVEN FURTHER. AGAIN I
REPRESENT INDUSTRY I REPRESENT
ONE COMPANY BUT BEYOND THE
DEVELOPMENT OF MEDICINES WHICH
IS WHAT WE DO. WE RECOGNIZE
THAT WE HAVE A ROLE IN
CONVENING THE COMMUNITY. AND SO
LAST YEAR ASTRAZENECA U. S.
CREATED A PROGRAM CALLED YOUR
CANCER. YOUR CANCER PROGRAM IS
A COMMUNITY ENGAGEMENT PROGRAM
DESIGNED TO CONVENE ENGAGE
ELEVATE AND CELEBRATE THOSE
INDIVIDUALS WITHIN THE
COMMUNITY WHO ARE MAKING CHANGE
OR WHO ARE TRYING TO MAKE
CHANGE. WITHIN THAT PROGRAM
NUMBER OF COMPONENTS THAT ARE
DESIGNED TO REALLY PUSH FORWARD
SOME OF THE PROGRAMS THAT WE
WANT TO SEE BUT I THINK IT'S
TELLING THAT IN THE FIRST YEAR
OF THE PROGRAM WE CHOSE TO
FOCUS ON PRECISION MEDICINE. I
THINK IT'S ALSO VERY TELLING
THAT IN THE FIRST YEAR OF THE
PROGRAM WE CHOSE TO FOCUS
SPECIFICALLY IN CALIFORNIA I'M
PART OF THAT IS BECAUSE OF THE
GREAT WORK THIS ALREADY
HAPPENING IN THE STATE AND
BECAUSE OF THE CALIFORNIA
INITIATIVE TO ADVANCE PRECISION
MEDICINE. EARLIER IN THIS YEAR
WE CONVENE TWENTY FOUR
STAKEHOLDERS FROM ACROSS THE
STATE. WHO ARE INVESTED IN THE
PRECISION MEDICINE ECOSYSTEM
THIS INCLUDED DOCTORS MCCALL
AND DOCTORS MUIR. IT INCLUDED
PATIENT ADVOCACY GROUPS HEALTH
CARE PROFESSIONALS HEALTH CARE
SYSTEMS WE HAD PAYER PRESENT.
THE VAST MAJORITY OF
INDIVIDUALS ARE ALL INVESTED IN
PM ON OUR OLD INTERESTED IN
OVERCOMING SOME OF THE BARRIERS
AND WE'VE TALKED A LOT AND
WE'VE HEARD A LOT OF TESTIMONY
FROM PEOPLE TODAY ABOUT THE
BARRIERS. TO PRECISION MEDICINE.
WE HOSTED A PRECISION MEDICINE
ROUNDTABLE SPECIFICALLY TO LOOK
AT BARRIERS AND I WON'T GET
INTO TOO MANY OF THE DETAILS
TODAY BECAUSE IT'S ALL
AVAILABLE ONLINE AT YOUR CANCER
DOT ORG. BUT JUST TO GIVE YOU A
SENSE I THINK MISTER CHAIR YOU
ASKED A QUESTION EARLIER AROUND
WHAT SOME OF THE BARRIERS. TO
PRECISION MEDICINE MIGHT BE WE
TALK SPECIFICALLY AROUND FOUR
MAIN AREAS. CLINICAL BARRIERS
TO PRECISION MEDICINE.
REIMBURSEMENT BARRIERS.
TECHNOLOGY BARRIERS AND
EVERYBODY'S FAVORITE
BUREAUCRACY. WE ARE STILL
CONTINUING TO FOLLOW UP WITH
THE TWENTY FOUR ATTENDEES FROM
THAT SESSION AND THE GREETER AT
ECOSYSTEM BECAUSE WE RECOGNIZE
THAT WE NEED TO BRING EVERYBODY
TO THE TABLE TO TALK ABOUT THIS
BUT IS OUR INTENT TO MOVE
FORWARD WITH SOME OF THE
SUGGESTIONS THAT CAME OUT OF
THAT ROOM TABLE IN ORDER TO TRY
TO OVERCOME SOME OF THOSE
BARRIERS. TO POLICY. IT IS OUR
IMPRESSION IT ASKED AND I CAN I
THINK IT'S BEEN HERALDED HERE
AND REITERATED BY SOME OF THOSE
WHO SPOKE BEFORE ME. THAT ONE
OF THE CHALLENGES WITH
PRECISION MEDICINE. IS THAT THE
SCIENCE IS ADVANCING FAR
FASTER. THAN THE RED REGULATION
AND LEGISLATION. I'M SO. ANY
OPPORTUNITY THAT WE HAVE TO BE
PART OF THAT GREATER ECOSYSTEM.
TO COME TO YOU TO TALK TO YOU
TO ENGAGE WITH YOU AND TO HELP
EDUCATE EVERYBODY ON WHAT THE
CHALLENGES ARE. AND SOME OF THE
SOLUTIONS TO OVERCOMING THOSECHALLENGES. WOULD BE WELCOME.
AND SO IF I CAN CASTRO. YEAH
AND I DON'T THE SUFFERS I HAVE
INTERRUPTED A PANELIST BUT I
I'M JUST. CURIOUS ON THAT.
SPECIFICALLY ON THAT POINT
ABOUT. GOVERNMENT. MOVING
SLOWER THAN THE TECHNOLOGY. IS
THAT. THE PERCEPTION OF THE
COMPANY THAT THAT'S A LARGELY A
FEDERAL PROBLEM FOR MORE OF A
STATE BASED PROBLEM OR JUST A
MIX OF BOTH. HOW WOULD YOU
CHARACTERIZE ABIZAID. I'VE
HEARD THIS BEFORE THIS IS NOT A
SHOCK. BELIEVE OR NOT BUT A HOW
WOULD YOU CHARACTERIZE THAT. I
WOULD SAY IT'S I WOULD SAY IT'S
A MIX OF BOTH FEDERAL AND AT
THE STATE LEVEL AND I THINK
THERE'S REAL OPPORTUNITY FOR
STATES LIKE CALIFORNIA. TO
REALLY FORGE AHEAD HERE IN TO
LEAD FOR THE FEDERAL POLICIES
LOCKING BEHIND STILL. AND SO I
THINK IT THIS IS AN OPPORTUNITY
FOR YOU TO TAKE THAT STEP AND
WE'RE ALREADY SEEING THAT WITH
SOME STATES AND SOME STATES
IMPLEMENTING THEIR OWN
LEGISLATION AND OTHER STATES
FOLLOWING SUIT BECAUSE THEY SEE
THE VALUE. THE CALIFORNIA IS
ALREADY POISED BECAUSE OF YOUR
INITIATIVE TO ADVANCE PRECISION
MEDICINE BECAUSE YOU'VE ALREADY
STARTED TO CONVENE THE KEY
STAKEHOLDERS. I REALLY DO
BELIEVE THAT YOU ARE POINTS TO
BE ABLE TO TAKE A LEADERSHIP
POSITION WITH PRECISION
MEDICINE AND WHAT THE FEDERAL
POLICY FOLKS JUST. YET SAYS
THOSE THINGS THAT WE'VE BEEN
HIGHLIGHTING TODAY ARE DRAWING
INVESTMENT. TO THIS STATE. BUT
IT'S NOT NECESSARILY ENOUGH TO
SUSTAIN THIS. OUT INTO THE
FUTURE NOW WILL WHAT ARE SOME
OF THE OTHERS YOU MENTIONED
SOME OF THE OTHER STATES. WHAT
ARE SOME OF THE KINDS OF THINGS
THAT YOU. ARE HEARING OTHER
STATES LOOK AT DOING TO TRY TO
WIN SET OF EYES THIS IS KIND OF
ACTIVITY IN THEIR STATE. IT'S A
GREAT QUESTION I CAN'T SPEAK
TOO MANY SPECIFICS FOR STATES
SPECIFICALLY BECAUSE I'M NOT
FAMILIAR WITH ALL THE POLICY.
BUT I KNOW THAT THERE ARE SOME
WORK BEING DONE AROUND VERY
SIMPLE THINGS LIKE PRIOR
AUTHORIZATION. TO SCIENCE OF
SIMPLIFY THAT SO THAT AGAIN
LEVEL THE PLAYING FIELD MAKE IT
EASY FOR EVERYBODY TO ACCESS
THESE MEDICINES. THERE'S SOME
WORK BEING DONE AROUND.
SIMPLIFYING THE PROCESS WITHIN
HOSPITALS WITHIN IN THAT I
PATIENT CARE SPACE IN ORDER TO
SPEED UP THE ABILITY THAT
PATIENTS CAN ACCESS DIAGNOSTIC
TESTS AND SUBSEQUENTLY THE
MEDICINES. AND SO ON I'M I'M
SURE MY COLLEAGUES WERE MORE
FAMILIAR WITH POLICY IN VARIOUS
OTHER STATES WILL NO MORE BUT
THERE CERTAINLY. INDIVIDUAL
PIECES OF LEGISLATION THAT ARE
MOVING THROUGH AND BEING
APPROVED ELSEWHERE IN THE
COUNTRY. IT TO TRY AND MAKE
COULD DANCE AND MOVE THINGS
FORWARD. APPRECIATE THAT. WORK
COMPETITIVE STATE SO I WAS LIKE
TO. KEEP TABS ON WHAT OTHER
STATES ARE DOING BUT I DIDN'T
MEAN THAT TO. DEAD TO DETERMINE
YOUR PRESENTATION HERE SO FEEL
FREE TO PROCEED. REALLY IF I
JUST HAVE TO LEAVE EVERYBODY
WITH WITH ONE FINAL REMARK IT
IS ASTRAZENECA IS OPINION THAT
AS AN INDUSTRY MEMBER AS AN
ENTITY THAT CREATES THE
MEDICINE WITHIN PRECISION
MEDICINE WE HAVE A ROLE TO PLAY
BEYOND THAT IN CONVENING AND
I'M BEING PART OF THAT GREATER
ECOSYSTEM IT IS OUR BELIEF THAT
PRECISION MEDICINE. WILL NOT
ACHIEVE ITS ENTIRE PROMISE WITH
ENGAGED WITHIN THE ECOSYSTEM
AND I THINK THAT COMMON HAS
BEEN REITERATED BY THOSE WHO'VE
TESTIFIED BEFORE ME SO THANK
YOU VERY MUCH. THANK YOU BOTH
VERY VERY MUCH AND WE ARE OVER
TIME LIKE I COULD ASK A FEW
MORE QUESTIONS BUT IN THE
INTEREST OF TIME I THINK WE
WILL GO AHEAD AND CONCLUDE BUT
THANK YOU BOTH VERY MUCH. FOR
THE PRESENTATION WE DO WANT TO
MAKE THE OPPORTUNITY AVAILABLE
FOR ANY PUBLIC COMMENT. AND IF
WE DO HAVE ANY TAKERS YES SIR
WOULD YOU BE ABLE TO COME
FORWARD TO THE ACTUALLY. MAKE
SURE THAT MY FOLKS ON YEAH. IF
YOU JUST COME TO THIS
MICROPHONE SIR IT WILL JUST
MAKE SURE THAT THAT MICROPHONE
IS ON. YES I THINK I THINK RON
.
THANK YOU FOR LETTING ME COME
UP TO SPEAK I'M LONNIE
BOOKBINDER I'M A CEO OF A
BIOTECH COMPANY LOCATED IN
DAVIS CALIFORNIA CALLED ARISE
PRECISION MEDICINE. THAT TELLS
A STORY. ON WHAT WE'RE TRYING
TO DO IS PREPARE PRODUCTS FOR
THE PHARMACEUTICAL INDUSTRY TO
TAKE A LITTLE BIT FURTHER DOWN
THE ROAD THEM WHAT WE CAN DO IS
A VERY SMALL COMPANY IN A SMALL
LABORATORY I'M SMALL BUDGET.
AND ONE OF THE THINGS IT IS
PART OF THE CI A PM. PROGRAM IS
TO. OFFER OPPORTUNITIES FOR
GRANTS. TO OUR DIFFERENT
ORGANIZATIONS. AND I'D I PUT
ONE AND JUST LAST YEAR IN A WAS
TO DEAL WITH DISPARITY. AND
PROSTATE CANCER. THAT WE HAVE
IDENTIFIED A- ARE
SUSCEPTIBILITY GENE. THAT MAKES
AFRICAN AMERICANS AND PERHAPS
LATINOS MORE SUSCEPTIBLE SO. IN
THE COMMENTS EARLIER ABOUT. A
REACHING ALL THE WAY DOWN TO
THE START OF A CANCER AND MAY
BE OF. BEFORE THE CANCERS EVEN
IDENTIFIED YOU HAVE. AN
OPPORTUNITY TO FIND
SUSCEPTIBILITY GENES AND USE
THEM AS BIOMARKERS HAS BEEN
TALKED ABOUT FOR. THE
DIFFICULTY I WANT TO BRING OUT
IS AS I LOOKED AT THE PROJECTS
FROM THE CIA PM. IT SEEM LIKE
IT WAS VERY HEAVILY
ACADEMICALLY ORIENTED. AND I
DIDN'T SEE MANY PROJECTS THAT
REALLY IT COULD BRING A DRUG TO
MARKET. MY DEFINITION OF
PRECISION MEDICINE IS A LOT
MORE NARROW IT'S BRING THE
RIGHT DRUG. AT THE RIGHT TIME
AT THE RIGHT DOSE. OF TO THE
RIGHT LOCATION AND LEAVE NORMAL
CELLS ALONE. AND THAT'S WHAT
WE'RE TRYING TO ACCOMPLISH OM
AND SO WE HAD A PRO A PROJECT
THAT WE PUT INTO THE CIA PM WE
DIDN'T MAKE THE CUT. AND I
WONDER IF THERE IS A WAY TO
OVER SEE THE PROGRAM SO THAT
SMALL COMPANIES THAT COULD
BRING AID. OF A DRUG FOR
PROSTATE CANCER DID THAT HAS
DISPARITIES THIS FOUNDATION. IF
THERE COULD BE EITHER A
SEPARATE CATEGORY FOR SMALL
COMPANIES AND NOT JUST FOR BIG
LARGE ACADEMIC INSTITUTIONS SO
I CHALLENGE THE RAM TO TAKE A
LOOK AT WHAT THEY'VE BEEN DOING
AND WHETHER OR NOT. IT'S. BEEN
FAIR SMALL COMPANY THE BRAND
NEW DRIVE FORWARD. THANK YOU
SIR APPRECIATE THE COMMENT AND
THE RELEVANT FOLKS ARE IN THE
ROOM. WHO CAN TAKE THAT COMMENT
A HEART WE HAVE ADDITIONAL
PUBLIC COMMENT ONE MORE
RESEARCH CHAIRMAN JUST THANK
YOU ALL OVER OUR GREAT
CALIFORNIA LIFE SCIENCES
ASSOCIATION. ONE RECOGNIZE YOUR
EFFORTS IN THE SELECT COMMITTEE
ON BIOTECH FOR EVERYTHING YOU
HAVE DONE AS YOU KNOW IS A
TRADE WE HAVE BEEN VERY
PROACTIVE WHEN I THINK THE
GOVERNOR'S OFFICE. FOR THE
INITIATIVE FOR YEARS AGO IN
THEIR CONTINUATION IN THE
BUDGET THIS YEAR ADVANCING
PRECISION MEDICINE DID YOUR
HEALTH HAVE TREMENDOUS COST
BENEFITS THE STATE. AND AS YOU
KNOW WE HAVE ADVOCATED.
VOCIFEROUSLY FOR SOME OF THE
REGULATORY TWEAKS AND NEEDED TO
HAPPEN THIS YEAR SO THANK YOU I
THINK YOU POLICY DIRECTOR
MISTERS IN CALI. AND EVERYTHING
THE COMMITTEE IS NOT. THANKS
FOR THE COMMENT. AND WE ARE
CAPTURING ALL OF THIS AND I'M
SURE THERE WILL BE LEGISLATIVE
FOLLOW UP SO I JUST WANNA
EXPRESS MY GRATITUDE FOR THOSE
OF YOU. WHO TRAVELED A LONG WAY
TO BE HERE WITH US TODAY FOR A
VERY VALUABLE. A DISCUSSION
THANK YOU ALL VERY MUCH THIS
CONCLUDES OUR SELECT COMMITTEE
HEARING. AND SAFE TRAVELS