40 Million Patients Strong: Dr. Tom Delbanco on Success of OpenNotes

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Margaret Flinter : Welcome to Conversations on Healthcare with Mark Masselli and
Margaret Flinter. A show where we speak to the top thought leaders in
health innovation, health policy, care delivery and the great minds who are
shaping the healthcare of the future .

This week Mark and Margaret speak with Dr. Tom Delbanco of Harvard,
Founder of OpenNotes, a movement he started to make clinicians notes
available for patients to view in an Electronic Medical Record. He launched
the effort a decade ago with much pushback from the medical establishment,
but they have just passed the 40 million patient threshold. He talks about
how it enhances patient engagement and improves patient satisfaction.

Lori Robertson also checks in, Managing Editor of FactCheck.org looks at
misstatements spoken about health policy in the public domain, separating
the fake from the facts. And we end with a bright idea, that’s improving
health and wellbeing in everyday lives.

If you have comments, please email us at [email protected] or find
us on Facebook or Twitter, iTunes or wherever you listen to podcast. You can
also hear us by asking Alexa to play the program Conversations on
Healthcare. Now stay tuned for our interview with Dr. Tom Delba nco of
OpenNote here on on Conversations on Healthcare.

Mark Masselli: We are speaking today with Dr. Tom Delbanco Professor of Medicine at
Harvard Medical School and Co - Founder of OpenNotes, an international
movement to give patients access to clinical n otes in their electronic health
record. Dr. Delbanco was Chief of the Division of General Medicine and
Primary Care at Beth Israel Deaconess Medical Center in Boston and also
created the Harvard Medical School Faculty Development and Fellowship
Program. Dr . Delbanco earned his Medical Degree from Columbia University
and we welcome you to Conversations on Healthcare .

Tom Delbanco: T errific to be talking with you .

Mark Maselli: Y our main mission in life has been to draw closer to those that we serve and
it’s no surprise that you launched OpenNotes a decade ago in an effort to
empower patients and to give them access to th eir provider’s c linical notes
and their electronic health record and we celebrate with you , it sounds like
you got a milestone recently over 40 million patients have now engaged in
OpenNotes through their electronic health record and I am wondering if you
could share with our listeners , t he origins of OpenNotes movement with us
and how this once radical idea has now taken root as part of the ma instream .

Tom Delbanco: In 1973 I woke up one morning to read an article in the New England
Journal of Medicine, saying we could really share our records, our notes and
everything we do with our patients. A light bulb went up for me and that light
bulb was actually supported further by an experience I had with a new
patient a few years later. I met primary care doctors and I got a new patient
one day who was sent to me actually by his family because his blood pressure

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was hard to control. When I took a hist ory from him as you do and I learned
from him that he was having a little trouble at work, he was having trouble
with his blood pressure, he was having trouble with his spouse; wasn’t
enjoying life very much, smoked, had a couple of beers a day. Then I als o
realized he was also a printer by profession. And printers in those days could
read everything upside down as a result of that. So I said to him, “Mr. A I
assume you can read everything that I am writing.” And he said, “Yeah that’s
true doctor.” And I sa id, “I am in a bit of a quandary I think listening to your
history, that you drink more than 2 beers a day, and that you are probably in
the early stages of alcohol abuse. But I don’t know whether I should write
that down or not, because there is no point in my writing it down, if you
don’t agree with me.” And he said, “Doc you better write it down.” That
prove d actually to be a turning point in his history and he was able to stop
drinking too much and life got a lot better for him. And that was another lig ht
bulb for me.

Then what happened of course is we got computerized medical records, we
got them very early at our hospital in Boston. And that was the end of the
world for the doctors, but then they got used to it. Then in the late 90s we
did one of the earliest patient portals in which we offered patient access
through secure internet processes to reading about their last test, looking at
their problem list, looking at their medication list and that was the end of the
world for the doctors, but then it p roved not to be the end of the world.

Then Jan Walker and I, Jan and I have worked together for 30 years. Jan is a
nurse by training, but a health services researcher. We kind of said the next
step is why don’t we invite patients to read everything we do including what
we write about them. We went to the Robert Wood Johnson Foundation.
They were kind enough to give us a planning grant and then more grants and
we had an extraordinarily exciting adventure in the past 10 years as a result
of that.

And kind o f strange but traditional course of innovation in healthcare, it
usually comes from one patient, usually comes from one insight or one
thought by one person and then it blossoms into something that hopefully
can be exciting, usually it isn’t, but this has been one of the lucky breaks for
me and a very exciting adventure.

Margaret Flinter: Well from what I understand the patient’s response to, your printer
patient who was able to read his notes upside down and really responded
with openness and truthfulness in a way that could allow you to help them
was maybe a little bit of a different reaction than what I have understood you
had when you floated the idea of OpenNotes to the provider community.
And there was a real concern that it might add unwanted burden t o the
workflow of the providers and patients maybe kind of be trusted with all that
information, but you have done the research to show that patients have
responded favorably, it has benefited them but the clinicians also report that
there is benefits . May be share with our listeners a little more about what you

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have learned from the research that you have done.

Tom Delbanco: Well we wrote a paper in the A nnals of Internal Medicine I think in
2010 in which we just suggested the idea once again that with the use of
electronic records now patients should be invited to read notes. The editor of
the Annals got a normal scatological letter from one of the regions of the
American College of Physicians which published his Annals saying this is the
craziest idea I ha ve ever heard of. Doesn’t Dr. Delbanco and his colleagues
understand that records belong to doctors, they are the domain of the
doctors. Doctors use them to remind themselves of patients to communicate
with other colleagues, they are already too many peopl e looking at records
such as insurance people and quality people and where does he get off saying
that now patients and their family should also be part of that.

So there was real resistance, and one of the big institution that is yet to adopt
OpenNotes, one of the trustees who is a physician is said to have gotten up
and said you are going to do this over my dead body.

Margaret Flinter: The proverbial dead body sir .

Tom Delbanco: So we went ahead and did this pilot study with 20000 patients and a
100 prim ary care doctors who volunteered in Boston at our hospital at the
Geisinger Health System in Pennsylvania which is slightly rural, less educated
people, quarter of them had not gotten out of high school. And then we did it
with a safety net hospital in Was hington State at the University of
Washington. We just like did it for a year and we asked doctors and patients
at the end of that year what was it like? The patient absolutely loved it. I
mean I have never seen a study in my life when 99% of anyone says a nything
about something, but 99% of the patients thought it was the right thing to do
and liked it, they felt more in control of their healthcare, they remembered
what happened in visits better. Remember that when you go to see the
doctor, you remember abo ut 50% of what he or she said and of that you
remember about half thereon. That’s been shown in many studies and it’s
the worst time in the world, to educate anyone about anything. They were
able to go home and cogitate, think about what was going on and d igest it,
look things up and they felt terrific about it. They also wanted to share it with
other people in their home and 80% in our very first study said, this is
something that I really wanted to have, that it would determine my choice of
the next healt h professional I go to.

Now the doctors on the other hand were worried about two things primarily,
one was that it would interfere with workflow. Doctors, 9 years ago were
stressed, doctors today are even more stressed. Doctors are disparated
bunch much t oo often, certainly primary care doctors and even though these
doctors only were volunteering and knew they could stop after a year, they
were very worried that they would interfere with the way things went. They
were also very worried that they would scar e their patients. Well it turned
out that their workflow was not perturbed, the email traffic did not change,
we counted that. The biggest, most common question I was actually asked by

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the doctors in that trial was, “Are you sure the computer is working?” They
virtually noticed nothing while the patients were having a wonderful time
with this. The patients were also reporting that very few of them were
worried or confused or agitated by the notes.

So that was a very good sign and that really we published t hat now in 2012 7
years ago and now we are as you mentioned at a point where 40 million
Americans have electronic access to notes through patient portals in which
they registered.

Mark Masselli: I want to pick up on that theme, you also have some really si gnificant health
systems that are using these, you mentioned Geisinger , Mayo Clinic, Kaisers
involve the VA as well . I am wondering as you sort of look at what is sort of
straightforward and simple, how has it impacted the clinical practice and
outcomes as well?

Tom Delbanco: So we have very few studies yet that show differences in clinical
outcomes. What we do have is much, much more data replicated from many
centers now, we have 200 centers involved with OpenNotes. Extraordinarily
similar reports from pat ients and doctors about their experiences with
OpenNotes, we did do one study in which we were able to compare patients
with OpenNotes, patients without OpenNotes and the way they refill their
medicines if they had high blood pressure. We were gratified to see that in
those who read their notes or those who actually had access to their notes,
had higher refill rates of their medicines than those who did not have access.

That’s the only really formal outcome study that we have so far. On the other
hand we h ave institutions trying a little [inaudible] [00:10:52] and saying we
are going to do this and it’s useful for our patients and it’s useful for us. We
have many, many anecdotes about patient safety, two eyes on chart are
better than two eyes on a thousand charts. When you have got a patient
reviewing his/her records and saying there is a mistake here, it’s the left knee
not the right knee, I missed that lump or the doctor missed that lump, I was
supposed to follow through on it. We have many rather exciting and sobering
anecdotes now in the patient safety arena which says this really increases
safety, but I think it’s a very important part of it.

We also -- ; adherence to medications, we just published a paper in the last
few weeks in the Annals of Internal Medicine showing that patients say very
firmly that they are understanding their medicines better and that is 15% to
maybe 40% of patients say they are taking their medicines more effectively. It
costs our nation $300 billion a year to have poor adherence to medications. If
you do a li ttle bit of math and you extrapolate to more patients reading their
notes, that to me as a doctor is maybe the most exciting finding we have so
far.

Margaret Flinter: Well much of your work is, I have read about it, it has rea lly been
about creating a healthcare system that is really designed through the
patient size. And I have picked up on a comment that you made in one of our

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articles. You said that most clinicians believe that they are the ones who are
saving patients but y ou believe it’s actually the patients who can sa ve the
clinicians maybe expand on that a little bit.

Tom Delbanco: Doctors and nurses but doctors in particular are having a very hard
time right now. And they have lost a lot of their persuasive authority, t hey
feel like of disempowered, they feel that they are run by corporations now,
controlled by corporations. As you probably know there is a very high
burnout rate among doctors and they are a disparated lot. The people they
feel closest to are their patien ts and the mechanisms that I believed in I think
will bring them closer still to their patients. Patients are our citizenry -- , they
are the consumers of the world, there are 340 million American patients that
are not nearly as many doctors. I think it’s w hen the citizen really wakes up
and stands up and says you have to change the circumstances for us as
patients and for those who are caring for us as doctors, a meaningful,
positive change will occur.

So that’s the sense I have said that patients will res cue us. If they care about
us, if we care about them, I think they will be our salvation rather then we
being their salvation. Basically we are talking about a partnership right and
that’s everything that I have been working on. I am a little bit of an opt imist, I
am a little bit of an idealist, but that’s where that came from that kind of
comment.

Mark Masselli: Well that’s great. We are speaking today with Dr. Tom Delbanco, Professor of
Medicine at Harvard Medical School and Co - Founder of OpenNotes. Tom I
want to sort of hold a thread on someone who is seasoned I would say in the
health system about how you are reimagining the future of the health
system. We had the opportunity of having one of your colleagues on Dr.
[inaudible] [00:14:01] demonstrating hi s work in sort of voice activated
interfaces with Alexa. I am wondering if you could talk a little bit about your
vision or the next phase around empowerment and the role technology will
play as we look out in horizon.

Tom Delbanco: Well if your patients d on’t get more engaged in their own healthcare
actively, we are going to be in an even more soup than we are in now. The
engaged patient there is lots of data now, the engaged patient has better
outcomes, does better, costs the system less money and improve s the
quality. Any strategy that is directed toward engaging patients actively in
his/her care is very important to do.

While my friends at the American College of Physician said that doctors o w n
records I think that is changing and that I would say that right now, patient s
and doctors probably jointly own records and my vision f o r the future is that
patients will own the record. That’s true interestingly in many countries that
we call developing countries , b ecause of apps, because of electronics,
because of the need for interoperability, the need for one institution to be
able to talk to patients and another one a nd to have patients have it all
together, that’s inextricably what’s going to happen. You are going to soon

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have on your cellphone or on your wat ch or on your whatever you are going
to have all your records together. I n fact you are going to have to manipulate
them, control them, integrate them that’s certainly the vision that I have and
also my close friends. And that involves engagement and contr ol. I learned
early on it’s totally impossible to predict what the model is between the
patient and the doctor, unless you ask them. I would ask my patients, you
want me to be stern and distant, you want me to be warm and cuddly, are
you a first name perso n, that I would write it down and then I would try and
assume that role with what patients are comfortable.

Some patients are going to want to master all the ir record, but we have to
begin, I think in pre - kindergarten. I asked my six year old grandson two years
ago, “Y ou want to read your notes ?” His response is perfect, he says, “If mom
says it’s okay I would like to read. ” Young people are much more used to
transparency. We are talking about really open communication. We have to
develop a healthcare syst em that can do that. It will save us money, I think it
will improve longevity which is a problem, because as people live longer, they
cost more money s omeone once taught me that if everyone stop ped smoking
right away that would bankrupt our healthcare syst em -- .

Margaret Flinter: When you look back on your wonderful long history in healthcare and
in education and in medical education , give a sense of what you see a s the
big transformation, the way we educate and train that next generation or
visions that th e healthcare providers that engages the patients, shares with
the patient, has healthcare education really change d to embrace this model.

Tom Delbanco: I think if we become in stantly better over the years at teaching young
health professionals what it is t o be with a person. How it is to listen? How it
is to develop more empathy? How it is to think about the whole person? I
think we become instantly better at that th a n my teachers help me be when I
was a young doctor. The paradox i s I think that this people know much less
medicine than I did. There is only certain amount of time in a day and I was
basically learning different heart murmurs and different heart sounds a nd
what it was to examine the abdomen and I think, I am much better at that
than the young d octors of today.

There is no question that young people today, of course are much more
technologically savvy. There is no question that I think they are more used to
transparency. I think we need to mobilize patients as teachers. They can be
our best teac hers. I had many patients who I would put in rooms with my
medical students and I wanted to give them Harvard appointment, because
they were far better teachers to my students than I was, I thought many
years back. I am very bullish about young people, the y will be much better at
things in the end than I am. It will be an exciting evolution to watch, I hope I
am around to watch some of it. It will involve technology for sure , b ut for
every time we go up, we take a few steps backwards and how we will come
ou t is not so easy to say.

Mark Masselli: We have been speaking today with Dr. Tom Delbanco, Professor of Medicine

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at Harvard Medical School and cofounder of OpenNotes, an international
movement to g ive patients access to clinical notes in their Electronic H ealth
Record. You can learn more about his important work by going to
www.opennotes.org or you can follow them on Twitter @myopennotes. Dr.
Delbanco, thank you so much for your decades of dedication and for joining
us on Conversations on Healthcare Today.

Tom Delbanco: My pleasure. Thank you very much for inviting me .

[Music]

Mark Masselli: At Conversations on Healthcare, we want our audience to be truly in the
know when it comes to the facts about healthcare reform and policy, Lori
Robertson is an award - winning journalist and Managing Editor of
FactCheck.org, a non - partisan, nonprofit consumer advocate for voters that
aim to reduce the level of deception in U.S. politics. Lori, what have you got
for us this week?

Lor i Robertson: On the campaign trail, former Vice President Joe Biden and President
Donald Trump have both claimed that a cure to cancer would soon become a
reality, if they were elected in 2020. Experts however, don’t share that
degree of optimism. Despite considerable progress, especially in recent years,
cancer isn't one disease to cure and advances in all the many types of cancer
th
are likely to take multiple decades. In a speech in Iowa, on June 11 , Biden
said, “I promise you, if I am elected President, you are going to see the single
most important thing that changes America. We are going to cure cancer . ” A
th
week later on June 18 Trump made a similar statement during his 2020
kickoff rally as he listed several agenda items for a second term. He said, “W e
will come up with the cures to many, many problems to many, many diseases
including cancer and others.”

While both politician suggested th ese cures would come while they were still
in office, neither explicitly said, when exactly this would happen. But
oncologist say, curing cancer is unlikely to happen within the next decade.
The first problem with both politician statements, several expert s told us, is
that cancer isn't a single disease. Timothy Chan, a physician - scientist at
Memorial Sloan - Kettering C ancer Center told us the name cancer applies to
hundreds or thousands of types of diseases. Given that curing cancer would
mean finding many cures, Chan said, “D oing so would be “impossible” in the
next 10 years. ” “Maybe the next 50 years to cover everythi ng” he said .

E ven if all cancers can’t be cured soon, multiple experts were quick to point
out that some cancers can already be cured, no advances needed.
R esearchers are encourage about many newly developed treatment such as
immunotherapies that take adv antage of the body’s immune system to
attack cancer . R egardless of who wins the White House in 2020 , e xperts told
us the way to speed up progress on cancer is to pay for more research,
without funding breakthroughs can’t happen. For more on this topic, see our
website at FactCheck.org. I am Lori Robertson, FactCheck’s Managing Editor.

20190722Delbanco

Margarent Flinter: FactCheck.org is committed to factual accuracy from the country’s
major political players and is a project of the Annenberg Public Policy Center
at the Univ ersity of Pennsylvania. If you have a fact that you would like
checked, email us at www.chcradio.com , we will have FactCheck.org’s , Lori
Robertson, check it out for you, here on Conversations on Healthcare.

[Music]

M ark Masselli: Each week C onversations highlights a bright idea about how to make
wellness a part of our communities and everyday lives. For all the people in
the world without limbs acquiring prosthetics can be costly and out of reach.
It’s especially chal lenging to make prosthetics for children, since they are in
constant state of growth. Rochester Institute of Technology, scientist Dr. Jon
Schull stumbled upon a clever and affordable solution, provided online, Open
Source templates to anyone, anywhere in the world who has access to a 3D
printer a nd provide d prosthetic hands for next to nothing.

Jon Schull : I had made this Google maps mash up. If you have a 3D printer and you
would like to help, put yourself on this map a nd if you know someone who
needs a h ands, put yourself on this map a nd by going something like this get
going.

Mark Masselli: H e found as he e - Nable network which has mass ed thousands of volunteer
makers in upwards of 40 countries around the world providing cheap , but
functional prosthetics for children in need.

Jon Schull : I think we are currently pushing 5, 800 identified members in our Google Plus
community. W e have followings in the thousands more. We know that we
have delivered about 800 hands devices and we suspect for this comparable
n umber have been downloaded by people we can track, because we put all
of our designs on the internet.

Mark Masselli: The movement has grown so rapidly that simple limb designs have become
more sophisticated as recipients of the prosthetic devices provide f eedback
for designers to make more efficient devices.

Jon Schull : We are still working on the appeasable firms. We are still working on the
individual finger movements, these things grip or ungrip that’s all they do, so
they are much less functional than o ur biological hand and they are also less
functional than a fancy myoelectric hand. But for kids it’s huge because those
expensive devices that are typically ou t of reach for children who would
outgrow them so it doesn’t make sense for them to get a $5000 or $10000
hand. O ur hands don’t even pretend to look like regular hands, they look like
superhero, Iron Man hands and for that very reason, they are very popular
with kids.

Mark Masselli: e - Nable a global collaborative network of Open Source designs linkin g to
makers with 3D printers to provide low cost prosthetic limbs to children and
adults around the world who might otherwise not be able to afford them,
now that’s a bright idea.

20190722Delbanco
[Music]
Mark Masselli: You have been listening to Conversations on Healthcar e. I am Mark Masselli.
Margaret Flinter: And I am Margaret Flinter.
Mark Masselli: Peace and health.
Moderator: Conversations on Healthcare is recorded at WESU at Wesleyan University,
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