HHS Data Chief Dr. Mona Siddiqui on Addressing the Challenges of Health Data Liberation

HHS Data Chief Dr. Mona Siddiqui on Plans to Liberate Trove of Health Data

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Margaret Flinter: Welcome to Conversations on Health Care, with Mark Masselli
and Margaret Flinter, a weekly show where we speak with the top thought
leaders in health innovation, health policy, care delivery, and the great minds,
who are shaping the health care of the future. This week Mark and Margaret
speak with Dr. Mona Siddiqui, Chief Data Officer of the U.S. Department of
Health and Human Services , who's overseeing the targeted effort to create a
seamless interface between all the health da ta stored at the various departments
of HHS.

Lori Robertson also checks in, the managing editor of FactCheck.org, looks at
misstatements spoken about health policy in the public domain, separating the
fake from the facts. We end with a bright idea that's improving health and well
being in everyday lives.

If you have comments, please email us at [email protected] , or find us on
Facebook or Twitter . We love hear ing from you . You can also find us on iTunes,
or Stit cher, or wherever you listen to podcasts. Please feel free to leave us a
review there. Now, stay tuned for our interview with Chief Data Officer at HHS,
Dr. Mona Siddiqui , on Conversations on Health Care .

Mark Masselli: We're speaking today with Dr. Mo na Siddiqui , Chief Data Officer
at the U.S. Department of Health and Human Services , where she's tasked with
building an agency - wide data management strategy. Prior to becoming the
CDO, Dr. Siddiqui served as the Health Lead for the White House Social and
Behavioral Health Science team during the Obama administration. Dr. Siddiqui
is on the faculty at Johns Hopkins School of Medicine , where she earned her
medical degree. She earned a master's in quantitative methods from the
Harvard T.H. Chan School of P ublic Health . Dr. Siddiqui, welcome to
Conversations on Health Care.

Dr. Mona Siddiqui: Thank you so much.

Mark Masselli: Well, HHS is sitting on a treasure trove of health data that really
holds the power to advanced health care and medicine as well as better informed
national health policy. The liquidity of that data still presents a major challenge.
HHS currently doesn't have a common practice in place for data sharing between
departments at the agency. I'm wondering if you could tell our listene rs about the
data insights initiative and the efforts under way to allowing data sharing
protocols between all of the divisions of HHS.

Dr. Mona Siddiqui: Ye s. Really the underlying pr e mise is how does a n
organization become more data - driven and the way in which it makes decisions
around policies and resource allocation . It turns out that there really isn't a
process in place right now for all the departments within HHS to share data in a

HHS Data Chief Dr. Mona Siddiqui on Plans to Liberate Trove of Health Data

seamless way . That if an individual in one agency request s data from another
agency, oftentimes it can take just as long as if that internal person was an
external individual to the department. Those data use agreements can take
about a year to negotiate . There isn't any transparency built into the process.

What we are really charged with is building an enterp rise - wide governance model
for HHS that creates a more transparent, accountable , and consistent process for
sharing data across agen cies to really have a more data - driven approach to
decision - making. As we do t hat, we 're also looking to see how we can begin to
harmonize the legal interpr etations for how we share data.

Depending on who you speak to when you're part of a data sharing negotiation
process, words can be interpreted in very different ways . We want t o really start
to understand how are those processes getting handled right now , and how can
we begin to address that variation to create a more consistent model for the
department as a whole .

Then the other piece is how do we create a technical platform t hat can enable
that data sharing to happen in a more seamless way. Harmonizing the workflow ,
so that somebody sitting in one agency can put in a request that can get track ed,
and somebody on the other end has a defined time period within which to
respond , and where we can begin to bring data together . Behind the HHS
firewall understand in a more holistic way the ways in which right now agencies
are seeing things in silos that we want to really bring together.

I always say this is really a 15 to 20 - year j ourney for any department . My job is
really to make sure that we lay the foundation that is strong , both on the
govern ance side and the platform side . We can't let complexity really stop us
from taking that first big leap.

Margaret Flinter: I think, Dr . Siddiqui, even harder to imagine the sheer volume
of these datasets that you're trying to align. I understand you have decades of
information from the Centers for Disease Control and Prevention , from the FDA ,
f rom Medicare. Talk us through processes re quired to manage such vast
datasets , and then to build a seamless interface ?

Dr. Mona Siddiqui: Well, so right now , all of those different agencies really
manage their own data. Our agenc ies g et data from states , or from hospital
associations. That pro cess is really within the purview of the agency , and t hat
entire life cycle of getting the data, cleaning up the data , and making sure that it's
in a usable format. We know that the data stored at those agencies have the
expertise and the best sense of how to manage that data.

We want to build a structure -- when we say governance, it's really about the
people, processes , and the technology needed to have in place , to enable data
sharing . Really our focus right now is to create those pipes and those proce sses

HHS Data Chief Dr. Mona Siddiqui on Plans to Liberate Trove of Health Data

that we really need in order to be able to share the data in a more seamless way ,
without letting the complexity of the different architecture at each agency be the
thing that stops us from making that progress.

Mark Masselli: Dr. Siddiqui, a lot of tech enthusiasts have been at HHS to help
liberate the data . We've been honored to have a number of them on our show ,
Farzad Mostashari , Br y an Sivak , Todd Park , and Susanna h Fox . It takes a lot
more time than some had hoped to get that data liberated . The HHS IDEA Lab
was created back in 2013 to accelerate that pace of transformation . I'm
wondering if you could share a little more about the Ignite Accelerator. Tell us
about some of the innovative strategies that have been developed through that
proces s .

Dr. Mona Siddiqui: Yes. The Ignite Accelerator really was a program that was
put in place by Br y an to spur innovation at the front lines of HHS. The idea being
that our frontline staff are seeing problems in really the most fully formed way
and have pain points that sometimes just aren't getting addressed by a
department as a whole. Since w e want to be able to enable and empower those
frontline staff to be able to address those, those pain points , and the Ignite
Accelerator has really ha d transforme d the culture of the department to embed
innovation , and every agency that we've worked with [inaudible 00:07:20] we
have had projects in the Ignite Accelerator from across all the different agencies
at HHS .

Think ing about all of those individuals who the n go back to their agencies after
working on these projects through mentorship at the IDEA lab , t hey go back and
they become champions for this way of approaching problems of collaboration, of
thinking outside the box , and of working with the private secto r in a really
meaningful way . Again, I think it's that culture of innovation, and I don't use that
word lightly, I think it's that culture that has led us to where we are today , o n a
journey to a fairly massive undertaking for the department and becoming more
data - driven .

A lot of the individuals , who 've gone through the idea of lab accelerator actually
have raised their hands to come and work on this data portfolio now, which I
think is really a testament to the strength of the program over the years and the
feeling of empowerment that these individuals have had, and wanting to make
sure that they are part of this journey moving forward .

Margaret Flinter: Well, Dr. Siddiqui, your outgoing Chief Technology Officer,
Bruce Greenstein, has said that he's pa rticularly proud of the initiative to
accelerate strategies for battling the opioid crisis. I know earlier this year your
agency hosted an Opio i d Code - a - Thon to bring together experts from technology
and data science , and government sectors, all seeking t o develop better tools for
public health officials , and HHS to access data that's related to this deadly
epidemic.

HHS Data Chief Dr. Mona Siddiqui on Plans to Liberate Trove of Health Data

Can you talk with us about what you think you might be able to achieve here and
if you have any promising early results or outcomes to date?

Dr. Mona Siddiqui: Yeah, of course. We were privileged to host the Opioid
Code - a - Thon at the department in December. Really the genesis of it was the
call to action for the entire department to take part and doing its part to help
address the opio i d e pidemic. Just because our office focuses on technology and
data , doesn't mean that we don't have an important role to play in all the
department priorities, especially a public health emergency, like the opio i d
epidemic. I'm also a physician. From that perspective, I will just say that this is --
speaking from the frontlines , th is is one of the worst public health crises that our
country has seen and we all need to do our part.

Our office really sa i d that we can, through our work on the open data side, really
create an opportunity to open the doors of HHS to the private sector to come and
help us in addressing this crisis through data. We compiled about 70 data assets
from across HHS, from the Department of Justice, from t he Department of
Transportation , the Department of Education , Census Bureau. We had about
seven states that participated in broad data for the first time and one private
entity as well. 70 data assets for one event a nd we had about 250 people come
from across the country to participat e , a nd really the range of participants was
fantastic to see.

We had academics, we had industry, we had startups . About 60 % of the people
who participated did not identify health care as their primary domain of expertise,
which in my mind really says tha t people are looking for an opportunity to help
the federal government in this journey. Data really can be the way in which we
all work together and t he thing we convene around . We had a solution, so we
requested solutions around three specific areas. O ne was around opioid
prevention . One was on solutions for treatment. The third was an understanding
opioid usage. We had a winner in each of those tracks . Each of those winners
are actually continuing to build their solutions, which to me is a testamen t that
this wasn't just a one and done event, but really a continuing movement forward .

We are in constant communications with those companies to see how we can
continue to support their work moving forward. As they develop their solutions
further, we ho pe to continue to partner in helping facilitate connections for testing
and scaling.

Mark Masselli: We're speaking today with Dr. Mona Siddiqui , Chief Data Officer
at the U . S . Department of Health and Human Services. Dr. Siddiqui, one of the
important g oals of all these initiatives and you ' r e talking about it in a specific
area, but is to really make all of this streamlin e data available to the outside world
for research, spark citizens, scientists . Health Data.gov is the portal through
which developers and entrepreneurs can access data for research and

HHS Data Chief Dr. Mona Siddiqui on Plans to Liberate Trove of Health Data

development. How do you see t his portal ultimately accelerating the pace of
research , both within the agency , but more broadly in the research community?

Dr. Mona Siddiqui: Well, I think it's a testamen t to Todd, and Bryan, and
Susanna h that over the course of many years, 2 ,000 data sets were released for
public use through HealthD ata.gov. I think that's really a pheno menal testament
to the leadership at the department for a long time and being incredibl e
proponents of data as the way to make government more open and as the way in
which we can continue to collaborate with entrepreneurs and researchers , who
have a different and unique perspective to be able to bring to some of the most
complex problems tha t the country is facing today.

I really want to make sure that we continue those efforts that HealthD ata.gov is
the place for accessing, not just data from the federal government from the
health care side, but more and more we have states and counties tha t have put
data on Health Data.gov . We hope to be able to bring more of that granular data
to Health Data.gov , so that it can continue to be a place for people from all
different backgrounds to be able to get access to data that they otherwise would
not be able to.

We also want to make sure that we understand what the demand is from our
stakeholders , and what data should be made publicly available. In the coming
months , we're going to be reaching out more to that community to get a better
understanding of what they would like to see from HealthD ata .gov, both in terms
of the data sets that are publicly available, but also additional tools that might he lp
in actually working with the data. We also want to make sure that we continue to
make that data more usab le.

Margaret Flinter: Well, Dr Siddiqui, I know you've joined with your predecessors
in this quest to liberate the data, but also data that is timely . We had Harvard's
Dr . Shah recently joined us in and he was saying he 's just perplexed by the fact
that , one, he has to pay money for Medicare data sets, but t w o, he just has to wait
a long time to get them in three when he gets them , t hey're already several years
old . I think you acknowledged at the recent Health Data palooza appearance
could take 15 or 20 years to get all the data moving the way everybody would like
it to. Tell us a little more about the long - term expectations for the robust sharing
of the HHS health data. What's it going to take to get there?

Dr. Mona Siddiqui: As we've taken a deep di ve into our agencies and our team
has really found across HHS over the last several months and spen t sometimes
between 10, 12 hours at every agency talking to leadership and in talking to data
stewards of some of the most high valued data assets across HHS , this is a
multilayered issue, one of which is each of our agencies are governed by
different statutory requirements . Sometimes , each of our data assets have very
different regulations that govern that data collection activity.

HHS Data Chief Dr. Mona Siddiqui on Plans to Liberate Trove of Health Data

When we talk about the sh aring of data, right now, we're just talking about how
do we create a more seamless process for internal data sharing to happen , so
we can start to use our data as an asset. Well, part of that is going to involve
questions around legal interpretations, wi thin the context of the different statutes
and regulations that we are all governed by , and harmonization of that. This is
an incremental process.

We are budding [PH] our work around business use cases for the department.
Our first use case is the opio i d epidemic . Our initial look is what are the data
assets that are high value for this specific use case ? How could we begin to do
some data linkage and analysis , and show value from that data? As we do that,
we will work to look at the legal agreements that govern that process and
h armonize it to the extent possible, and then take it to the next use case.

Rather than spending time doing a complete landscape analysis , which would
take another 10 years, we really do think that it is our job to show value from data
and value from the process in order to really change the culture and show , not
just to our leadership , but to our agencies , and the staff that there is value i n
being a part of this process.

Mark Masselli: Dr. Siddiqui , Margaret brought up Heal th Datapalooza . I'm
reminded of a conversation we just had with the Co - Chair of that event , Dr. Rasu
Shrestha, Chief Innovation Officer at University of Pittsburgh's Medical Center,
who noted that we're going to see an acceleration of health data sharing in the
coming years as the move towards precision medicine and artificial intelligence
beg i n to take hold in the marketplace. HHS ' Chief Technology Officer launched a
program , called HHS Startup Day , where entrepreneurs can sell their innovative
ideas to HHS . Tell our listeners a little more about that program.

Dr. Mona Siddiqui: We want to demystify the ways in which the federal
government operates . We want to create a level of a playing field for those small
startup s that have some really big ideas a nd really innovative solutions. We want
insight into what is happening in the market. A lot of times the folks that may get
meetings are the big corporations . That is the culture that we would like to
change.

HHS Startup Day is really our attempt to br ing together that community with the
leadership by HHS . The first event in Washington , D . C. , we had representatives
from FDA and from CMS , from our acquisitions folks at HHS, along with NIH , and
others . It was a great way to provide feedback to the start up community about
what we are looking for , and for us to hear the pain points from that community ,
and to understand how can we help smooth that pathway for them.

The next one was in Boston . We've had one in Nashville . We'll be having
additional events around the country , both this year and next year, and hope that
this is the start and a more meaningful way to engage wi th that community.

HHS Data Chief Dr. Mona Siddiqui on Plans to Liberate Trove of Health Data

Margaret Flinter: We've been speaking today with Dr. Mona Siddiqui , Chief Data
Officer at the Department of Health and Human Services. You can learn more
about their work by going to hhs.gov/idealab , and you can follow her on Twitter ,
@M ona S iddiqui MD . Dr. Siddiqui , thank you so much for joining us on
Conversations on Healt h Care today .

Dr. Mona Siddiqui: Thank you.

[Music]

Mark Masselli: At Conversations on Health Care, we want our audience to be
truly in the know when it comes to the facts about health care reform and policy,
Lori Robertson is an award - winning journal ist and Managing Editor of
FactCheck.org, a nonpartisan, 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?

Lori Robertson: With Supreme Court Justice , Anthony Ken nedy 's, retirement ,
President Trump can nominate another justice to the court that has sparked
concern among democratic politicians . The court's landmark decision in Roe v .
Wade, making abortion legal nationwide , could be overturned. For instance, the
Se nate Minority Leader , Chuck Schumer , wrote in an Op - Ed in The New York
Times that there were " at least 20 states poise d to ban abortion immediately if
the 1973 decision is overturned." What would happen if Roe v . Wade went
away? Jurisdiction would go bac k to the states , which then would be able to
decide whether or not to allow abortion or what restrictions to impose.

The Guttmacher Institute , a reproductive health research organization , says that
17 states have laws that could restrict abortion , while n ine states have laws that
protect abortion rights . Among the first group, four of them have laws calling for
abortion to be banned automatically if Roe v . Wade were overturned. Those four
are Louisiana, Mississippi, North Dakota, and South Dakota. 10 st ates have
bans on abortion that have been on the books since before the 1973 Supreme
Court decision. Some states may reconsider those old laws , should Roe be
eliminated. Massachusetts , for i nstance, is one of those states. Seven states
have passed laws expressing an intent to put restrictions on abortion as
permitted by the High Court if Roe were overturned .

As for the nine states that have laws calling for the protection of abortion rights,
those are California, Connecticut, Delaware, Hawaii, Maine, Ma ryland, Nevada,
Oregon, and Washington. The Center for Reproductive Rights says that if Roe is
overturned , 23 states could ban the procedure and 19 other states could protect
abortion rights . That's my fact check for this week. I'm Lori Robertson,
Manag ing Editor of FactCheck.org.

HHS Data Chief Dr. Mona Siddiqui on Plans to Liberate Trove of Health Data

[Music]

Margaret 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 University of Pennsylvania. If you have a fac t that you'd like
checked, email us at chcradio.com . We'll have FactCheck.org's Lori Robertson
check it out for you here on Conversations on Health Care.

[Music]

Mark Masselli: Each week conversations highlight a bright idea about how to
make wellness a part of our communities into everyday lives. Diabetes affects
30 million Americans and management of the chronic illness can often prove
challenging for patients who must keep vigilant about things , such as diet and
exercise to stay healthy . When the patient population is part of an ethnic
minority , language and cultural barriers prove a n additional challenge for
clinician s seeking to improve the health of their diabetic patients. Researchers at
the NYU School o f Medicine, Department of Population Health decided to target
their efforts on the city's Bangladeshi c ommunity , who suffer from hig h rates of
diabetes.

Nadia Islam: The community health worker model , I 'd like to use the metaphor of
a bridge. CHW s reall y serve as a bridge between communities and between
systems of care . Because CHWs are respected and trusted individuals in their
own communities, they're able to connect people to care and connect people to
resourc es and information in ways that's underst andable and relevant for them.

Mark Masselli: Nadia Islam trained a group of community health workers to meet
the participants in their home and communities to help the test group better
manage their condition.

Nadia Islam: There's thousands of diabete s management curriculum out there .
They are often not culturally tailored for specific communities . We worked with
our coalition to completely culturally tailor a curriculum by our community health
workers in group settings with som e one - on - one follow - up as well.

Mark Masselli: Islam says community health workers gain ed the trust of patients
they were assigned to , helping them and their families adhere to impor tant diet
and exercise regimes.

Nadia Islam: We found early on that female participants in p articular expressed
hesitations and barriers to finding what they perceived as appropriate places for
physical activity . We actually created an at - home culturally tailored physical
activity in language at home DVD for participants.

HHS Data Chief Dr. Mona Siddiqui on Plans to Liberate Trove of Health Data

Mark Masselli: The re sults were significant. Islam says in six months, 55 % of
the test group , who worked with community health workers manage d to keep
their blood sugar levels at or below 7%, a dramatic improvement over the
participants in the control group , who did not have the community health worker
intervention . A targeted culturally relevant community health worker approach to
helping patients better manage their diabetes that has yielded significant
improvement in diabetes control, yielding better health outcomes , and l ower
health expenditures. Now, that's a bright idea.

[Music]

Mark Masselli: You've been listening to Conversation s on Health Care. I'm Mark
Masselli.

Margaret Flinter: I'm Margaret Flinter:

Mark Masselli: Peace and health.

Female : Conversations on Health Care is recorded at WESU at Wesleyan
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