>> MOST PATIENTS REALIZE THAT WE
ACTUALLY ARE PERMITTED TO HAVE
FULL ACCESS TO OUR DOCTOR'S
NOTES ABOUT US.
NOW A NEW PROJECT CALLED OPEN
NOTES WILL WEIGH THE PROS AND
CONS OF PATIENT ACCESS.
AS PART OF A 12-MONTH TRIAL
ABOUT 115 DOCTORS, INCLUDING
SOME HERE AT BETH ISRAEL
DEACONNESS MEDICAL CENTER WILL
MAKE THEIR NOTES MORE EASILY
AVAILABLE TO PATIENTS BY POSTING
THEM ONLINE.
FOR MORE ON WHERE THIS PROJECT
IS HEADED, WE HAVE JAN WALKER,
THE STUDY'S SENIOR AUTHOR, TOM
DR. DEL BANKO OF BETH ISRAEL
DEACONNESS.
MOST PEOPLE DON'T REALIZE WE
HAVE ACCESS TO OUR DOCTOR'S
NOTES, BUT THE FACT OF THE
MATTER IS WE DO.
WHAT IS THE INTENT OF THIS
STUDY?
>> THE INTENT IS TO GIVE IT A
TRY.
>> GIVE IT A TRY IN MAKING IT A
MORE FORMAL EXCHANGE?
>> YES.
WE'RE OFFERING PATIENTS ACCESS
TO THE NOTES THAT DOCTORS WRITE
AFTER THEIR VISITS, AND IT'S
TOTALLY OPTIONAL.
THE PATIENTS MAY LOOK OR NOT.
BUT IT'S A RESEARCH STUDY.
WE'LL TURN IT ON AND SEE IF THEY
LIKE IT.
AND SEE IF THE DOCTORS LIKE IT.
>> DOCTOR, DO YOU HAVE A SENSE
YET?
I KNOW THAT YOU SORT OF COME
DOWN A LITTLE BIT ON BOTH SIDES
OF THIS ISSUE, BUT THERE ARE A
LOT OF CONCERNS, SUCH AS THE
EXTRA TIME DOCTORS MAY HAVE TO
SPEND WITH PATIENTS?
WHAT IS YOUR SENSE GOING INTO
IT?
>> WELL, I'VE BEEN WANTING TO DO
THIS FOR 30 YEARS.
I HAD AN EXPERIENCE MANY YEARS
AGO WHEN I WAS CARING FOR A
PRINTER, AND I REALIZED THAT HE
COULD READ WHAT I WAS READING
UPSIDE DOWN.
AND I KIND OF DISCUSSED WITH
HIM, WHAT SHOULD I WRITE DOWN?
AFTER THAT I WANTED TO SHARE
NOTES.
AND SO I'VE BEEN STUBBORN, AND
WE'RE DOING IT NOW.
AND DOCTOR VER AMBIVALENT ABOUT
IT.
THEY'RE FRIGHTENED THAT IT WILL
TAKE TOO MUCH OF THEIR TIME,
THAT THE RESPONSE FROM PATIENTS
MAY BRING THEM TO A GRINDING
HALT AT A TIME WHEN PRIMARY CARE
DOCTORS ARE CERTAINLY FEELING
OVERWHELMED.
AND THEY'RE NERVOUS THAT
PATIENTS MAY NOT UNDERSTAND, MAY
NOT LIKE SOME OF THE THINGS THEY
MAY.
THEY'RE ALSO VERY EXCITED ABOUT
IT, BECAUSE MANY OF THEM FEEL IT
COULD GET THEM CLOSER TO THEIR
PATIENTS, BREAK DOWN SOME OF THE
WALLS BETWEEN PATIENTS AND
DOCTORS, AND ACTUALLY HAVE
PATIENTS UNDERSTAND BETTER WHAT
THEY'RE THINKING, COME TO MORE
GRIPS WITH WHAT THEY NEED TO DO.
SO THERE'S AMBIVALENCE, AND WHAT
WE'RE DOING IS TRYING TO LEARN
WHAT THE OUTCOME WILL BE.
>> MICHAEL, OF COURSE YOU ARE A
PATIENT.
AND THERE'S CONCERN ABOUT
PATIENTS, TOO, THAT -- HOW MUCH,
FIRST OF ALL, THERE'S A LOT I
PROBABLY WON'T UNDERSTAND, AND
HOW MUCH I WANT TO LEARN ABOUT
MYSELF.
SO WHY ARE YOU PARTICIPATING?
>> WELL, AS A PATIENT, I WANT TO
KNOW AS MUCH AS I POSSIBLY CAN,
BECAUSE I DON'T SEE THAT GOOD
HEALTH IS A MATTER OF A DOCTOR
MAGICALLY MAKING CERTAIN
DECISIONS.
I THINK IT'S A TRANSACTION
BETWEEN A PATIENT, THE PATIENT'S
FAMILY, AND THE MEDICAL SYSTEM.
AND WE HEAR A LOT ABOUT
PREVENTATIVE MEDICINE, FOR
EXAMPLE.
TO PREVENT THINGS IS A LOT
CHEAPER, AND IT REQUIRES
EDUCATION.
EDUCATION REQUIRES INFORMATION.
THIS SEEMS TO ME A NO-BRAINER
WAY OF GETTING GOOD INFORMATION.
>> WELL, IT'S INTERESTING,
BECAUSE THERE'S THIS DISCUSSION
OF SORT OF SHARING
DECISION-MAKING.
AND I THINK A LOT OF PEOPLE ARE
INTIMIDATED.
A LOT OF PEOPLE WANT TO LEAVE
THAT DISCRETION COMPLETELY UP TO
THEIR DOCTOR, BUT YOU HAVE A
CONFIDENCE THAT YOU CAN ABSORB
THIS INFORMATION AND BE
FORTHRIGHTLY IN THAT PROCESS.
>> WELL, THEY CAN.
THEY DON'T HAVE TO LOOK AT THIS
INFORMATION.
MAYBE I HAVE A PERSONAL STAKE IN
THIS BECAUSE I'M THE SON OF A
MAN WHO AT AGE 28 WAS DIAGNOSED
WITH A TERMINAL DISEASE, AND WAS
NEVER TOLD.
THAT WAS THE ETHICS AT THE TIME.
AND IT HAD VERY SIGNIFICANT
NEGATIVE EFFECTS ON MY FAMILY.
>> YOU KNOW, SHARED
DECISION-MAKING, THE TERM THAT
YOU USED, IS VERY CENTRAL TO
WHAT WE'RE THINKING.
IT'S A SIMPLE NOTION.
I HAVE A BODY OF KNOWLEDGE AS A
DOCTOR THAT YOU PROBABLY DON'T
HAVE.
YOU KNOW MORE ABOUT YOU THAN
ANYONE ELSE.
AND I THINK OUR JOB AS A DOCTOR
PATIENT IN A RELATIONSHIP IS TO
BRING THOSE TWO DIFFERENT FUNDS
OF KNOWLEDGE TOGETHER AND COME
TO GRIPS WITH THEM AND
UNDERSTAND THEREFORE WHAT'S BEST
FOR YOU, WHAT'S THE BEST CHANCE
FOR GETTING YOU BETTER.
AND I THINK THIS IS A WONDERFUL
AVENUE PROMOTING THAT KIND OF
THINKING.
>> WHAT ARE WE GOING TO DO ABOUT
THE JARGON?
>> THAT'S INTERESTING.
THERE ARE TERMS LIKE -- I KNOW
THERE IS A CONCERN.
THE TERM SOB, AND A PATIENT
READS THAT ABOUT THEMSELVES,
WHEN REALLY IT MEANS SORTNESS OF
BREATH, BUT GOING BACK TO THE
TIME YOU WERE TALKING ABOUT YOU
HAVE TO EXPLAIN ALL OF THIS TO
PATIENTS.
ARE DOCTORS GOING TO HAVE TO
SHIFT THE WAY THEY'RE WORKING
AND SUDDENLY WRITE MORE
PEDESTRIAN LANGUAGE SO THAT WE
CAN ALL UNDERSTAND?
>> WELL, CERTAINLY THAT'S ONE OF
THE WORRIES OF DOCTORS, WHO ARE
THINKING ABOUT WHETHER TO DO
THIS.
I THINK THAT PATIENTS ARE
INCREDIBLY RESOURCEFUL IN
READING MEDICAL LITERATURE, AND
I THINK THAT THEY WILL PROBABLY
SEE THINGS THAT THEY DON'T
UNDERSTAND, AND THEY'LL LOOK
THEM UP.
BUT ONE OF THE QUESTIONS
CERTAINLY IS WHETHER DOCTORS
WILL CHANGE THE WAY THEY WRITE
NOTES.
AND IN FACT THIS IS A RESEARCH
STUDY, AND WE'RE DOING SOME
SERIOUS EVALUATION.
THAT IS ONE OF THE QUESTIONS WE
WILL ASK DOCTORS WHEN WE'RE
FINISHED, DID YOU CHANGE THE WAY
THAT YOU WRITE.
YOU KNOW, IN A WAY THIS STUDY
HAS A BROADER SOCIETAL CONTEXT
IN THE WHOLE MOVE TOWARD
TRANSPARENCY.
WE ALL DEAL WITH A LOT OF
INSTITUTIONS WHERE OUR
TRANSACTIONS WITH THEM ARE
BECOMING MORE OPEN.
AND WE'RE VERY USED TO THE IDEA,
FOR EXAMPLE, OF BEING ABLE TO
ACCESS THE INFORMATION THAT OUR
BANKS HAVE ABOUT OUR MONEY
ONLINE.
AND THIS IS SORT OF A LOGICAL
EXTENSION OF THAT TRANSPARENCY
NOTION.
>> ON THE POINT OF ONLINE, I'M
WONDERING SORT OF WHERE THIS
RESTS IN THE FIELD, BECAUSE
THERE ARE A LOT OF PEOPLE WHO
ARE SAYING THAT HOSPITALS,
DOCTORS, DON'T WANT THIS TO
HAPPEN, SO THEY IMPOSE
OBSTACLES.
THEY CHARGE FOR COPIES OF
THEIR -- OF THE DOCTOR'S NOTES.
THEY MAKE YOU COME IN AND ONLY
READ THEM IN A CLAIM SETTING.
AND THERE ARE OTHER WAYS TO NOT
MAKE IT ACCESSIBLE.
WHERE DOES THE FIELD COME DOWN
ON THIS?
WE'RE TRYING TO LEARN THAT.
AND THAT'S -- THOSE ARE THE
QUESTIONS WE'RE ASKING.
CERTAINLY THE TRADITION HAS BEEN
THAT THESE ARE THE DOCTORS
NOTES.
THEY USE THEM FOR THEMSELVES, TO
REMIND THEMSELVES TO COMMUNICATE
WITH OTHER DOCTORS, AND IF
THERE'S SOME ADMINISTRATIVE
ASPECTS AND BUREAUCRATIC
ASPECTS, BUT IT'S NEVER REALLY
INTERESTED THEIR MINDS, OUR
MINDS, THAT THESE BELONG TO THE
PATIENTS.
SO THERE'S GOING TO BE A LOT OF
AMBIVALENCE.
SOME PEOPLE THINK WE'RE NUTS.
OTHER PEOPLE THINK IT'S ABOUT
TIME.
AND WE'RE GOING TO TRY TO STUDY
IN A RIGOROUS WAY WITH AN AWFUL
LOT OF PATIENTS AND A LOT OF
DOCTORS REALLY WHAT THE FACTS
ARE.
WE'RE ASKING THEM BEFORE WE
START, WHAT DO YOU THINK?
WHAT DO YOU THINK WILL HAPPEN?
WHAT ARE YOUR EXPECTATIONS, YOUR
FEARS, YOUR WORRIES, AND HOLDING
OUR BREATH ABOUT A YEAR FROM NOW
WHERE WE'LL GO BACK AND SAY,
HEY, WHAT DID HAPPEN?
WAS IT SO BAD?
WAS IT GOOD?
WHAT UNFORESEEN CONSEQUENCES
CAME?
THAT'S THE FUN OF DOING AN
EXPERIMENT.
>> SPEAKING OF CONSEQUENCES,
MICHAEL, YOU'RE NOT JUST ANY
PATIENT, YOU'RE AN ATTORNEY.
SO DO YOU SEE ANY AVENUES THAT
DOCTORS ARE GOING TO BE OPENING
THEMSELVES UP MORLEY
CONTINGENTOUSLY?
>> I THINK IT'S A WASH.
SOME LAWYERS WILL TRY TO EXPLOIT
THE INFORMATION.
SOME LAWYERS WILL LOOK AT THE
INFORMATION AND SAY, OH, MY GOD,
THIS PERSON PROTECTED THEY SAY.
I DON'T THINK REALLY THINK YOU
SHOULD MAKE POLICY ABOUT
SOMETHING IMPORTANT ON THE BASIS
OF THE FACT THAT A FEW PEOPLE
WILL USE THE INFORMATION.
THEY CAN GET THIS KIND OF
INFORMATION INNING A LAWSUIT
ANYWAY.
I THINK -- COMMENTING ON WHAT'S
BEEN SAID, I THINK, YOU KNOW,
THE REAL COST HERE IS NOT SO
MUCH DOCTOR TIME, ALTHOUGH
THAT'S TREMENDOUSLY IMPORTANT,
BECAUSE THE MORE TIME A DOCTOR
HAS THE BETTER SERVICE I ASSUME
SHE CAN GIVE, BUT I THINK THE
REAL ISSUE HERE IS THAT DOCTORS
WOULD BE STEPPING DOWN FROM
THEIR GODLY PERCH WHEN THEY
SHARE INFORMATION.
YOU KNOW, IT'S KIND OF SIMILAR
TO OTHER THINGS THAT ARE
HAPPENING IN THE SOCIETY.
AS JAN SAID ABOUT ACCESS TO YOUR
INFORMATION ABOUT YOUR MONEY.
THERE'S A GREAT STRUGGLE BETWEEN
TRANSPARENCY AND PRIVACY WITH
RESPECT TO GOVERNMENT SECRECY,
WITH RESPECT TO CONSUMER
PROTECTION, AND SO FORTH.
I THINK THIS IS ANOTHER FRONT
WHERE THIS IS BEING SORTED OUT.
>> I JUST WANT TO ASK, JUST A
COUPLE SECONDS LEFT, BUT I'M
WONDERING DOES THIS AT ALL SHIFT
RESPONSIBILITY?
IF PATIENTS START TO TAKE THIS
UPON THEMSELVES, THEY'RE LOOKING
AT THEIR OWN DOCUMENTS, WILL
THEY BEAR MORE RESPONSIBILITY?
IS THIS WHAT HOSPITALS AND
DOCTOR ARE THINKING?
>> WELL, IN FACT IT DOESN'T
REQUIRE MORE RESPONSIBILITY.
I THINK IT'S POSSIBLE THAT
PATIENTS ARE BETTER INFORMED,
WHICH THEY HOPEFULLY WILL BE
ONCE THEY READ THESE DOCUMENTS,
WILL WANT TO TAKE MORE
RESPONSIBILITY.
BUT WE'LL SEE.
>> I PROMISE YOU ALL WE WILL
HAVE YOU BACK IN A YEAR, BECAUSE
THIS IS FASCINATING.
WE WANT TO SEE HOW THIS TURNS
OUT.
THANK YOU ALL SO MUCH FOR
COMING.
>>> AND COMING UP NEXT, ALL THAT
SCORCHING IN BOSTON.