July 29, 2010: Reading doctor's notes

>> 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.