Imagine a future where using data and digital tools can give us personalized

medicine: where each of us gets the right treatment at the right time. My name is
Bonnie Feldman, also known as @DrBonnie360 and I am delighted to be here today.
I bring to our talk today multiple perspectives – first as a dentist and then Wall
Street analyst on all sides of the investor equation, and now as a business
development consultant and digital health analyst. As an independent digital health
analyst, I have recently interviewed more than 150 companies, each time wondering
how new digital tools could help each of us.







Remember the Jetsons? Like today, the 60s were a time of innovation in
science and society.
My family could be the Jetsons of today, if we added a few more people and
had them all wear doctor coats. But being a family of physicians does not change the
fact, that like many of you, my family and I have seen healthcare from both sides of
the examining table.
Poor Judy Jetson has just been diagnosed with Crohn’s and Celiac disease. She
shows up at the doctor’s office and gets today’s best treatment. Unfortunately, the
current norm for autoimmune treatment is trial and error to find the best drug – this
can be time-consuming and ineffective.
So, putting on our patient hats for a moment, I want us all to imagine a world
where Judy Jetson could get her optimal treatment first, instead of today’s practice:
trial and error, using the cheapest drug first…..


Luckily for Judy these are exciting times.
There is a tsunami of new data and a convergence of three big trends: mobility,
cloud computing, and big data. There is an evolving ecosystem of apps across the
disease spectrum. For Judy and the 50 million other autoimmune patients, who
spend over $100 billion on health management annually, perhaps some of these apps
aimed at chronic disease and care coordination will prove useful.
In my study “Big Data in Healthcare – Hype and Hope” I looked at how our
new data management tools – which include predictive analytics, machine learning,
and natural language processing – are being used in research and clinical trials that
can help Judy.
I maintain that, unlike in previous times, we now have not only the new tech
but also the society-wide shifts in thinking that will enable us to work together in
new and different ways. Let me explain why.


From my research, I have identified three big-picture themes that are propelling
the use of new data-enabled tools to ignite precision medicine.
1. New forms of data
2. New approaches to research, discovery and clinical trials
3. Trends in Sharing and Collaboration













At the Consumer Electronic Show and SXSW this year, the New York Times
and the Wall Street Journal have noticed the growing variety of health trackers.
• Fitness trackers Fitbit, Shine, and Jawbone record hours slept and steps walked
• Edible devices such as Proteus embed sensors in pills to track medical compliance
• Fertility trackers such as Glo to help women track ovulation cycles
• Other devices such as Alivecor’s portable heart health tracker and Propeller Health
which is a platform that manages respiratory health, including asthma
Mobile companies like Apple and Samsung are working to ensure that
smartphones can act as repositories for these new streams of health data. Combined,
these devices carry the promise of helping us better understand the role of exercise,
food, and sleep in our day-to-day health.
So you see that the body has become one big sensor!




Luckily, for Judy, science is roaring along. There has been an explosion of
omics, with rapid advances in our understanding of a variety of new scientific
relationships:
• In genomics, the study of genes and their functions
• In proteomics, the large-scale study of the structure and function of proteins
• In nutrigenomics, looking at the effect of food on genomic expression
• In metabalomics and microbiomics – the list goes on
All of this research, combined with next generation genetic sequencing and
cloud computing, is helping to fuel translational research that may finally make the
dream of personalized medicine closer to a reality.
For Judy, these are exciting times, when new tools and computational power
have the potential to speed up research, discovery, and clinical trials. This new
knowledge will help improve our understanding of autoimmune diseases. Most
importantly for Judy, it will be possible to know what works for whom and when.


How will these scientific advances serve Judy? What we need are software
platforms that can bring together the data and turn it into useful information. I have
compiled a list of companies that are leading the charge toward digital health.
Syapse is bringing omics into routine medical use. They provide a data
platform and software ecosystem for integrating genomics, proteomics and other
omics data into the clinical ecosystem. Importantly, they are also creating
knowledge sharing across and between different kinds of institutions.
NuMedii is thinking out of the box, using predictive analytics and machine
learning to find new uses for old drugs. They recently found that an epilepsy drug
could work in Inflammatory Bowel Disease.
Personalis has brought together deep expertise in all aspects of DNA
sequencing and analysis, and has created a series of improved best practices for each
step in the process, to provide advanced diagnostics and improved genomic tools for
clinicians and researchers.
The work of these innovative companies is hopeful news for Judy, patients of
the other 100 types of autoimmune disease, and the other 9.8 million other women
whose lives will be shortened by 15 years due to autoimmune disease.




Judy needs faster, cheaper drug development. And she needs it now!
According to the Juvenile Diabetes Association and the Crohn’s Foundation there are
alarming increases of these diagnoses in children and young adults. Type 1 Diabetes
in those less than 20 years old has risen 23% from 2001 to 2009 while children under
the age of 18 are the fastest growing population of IBD patients.
Perhaps we need a sense of public urgency in drug development, much like
when the American public came together around the Moon Shot or the War on
Cancer
Look at some the amazing new tools we have.
DNA Nexus has connected more than 300 researchers at five institutions. They
have sequenced 3,751 complete genomes and 10,771 exomes. This required 2.4
million core-hours of computational time and 860 terabytes of storage. The
collaborators can now perform downstream analyses on the 430 terabytes of results -
Sounds pretty cool to me.
How about the fact that Ayasdi looked at diabetes data and suggested there are
more than 2 types? Perhaps this finding could suggest that there are really many
more than the 100 different kinds of autoimmune diseases currently identified.
Another interesting example is GNS healthcare, which is working on using
big data analytics to develop predictive models for MS and other diseases. This is
hopeful because prediction is one step closer to prevention.

















Judy needs more clinical trials that can help solve her problems – now! Given
that tech has completely changed the way we communicate, work and play, it is time
to bring these new tools to clinical trials. There are both private companies and
private/public partnerships working on this.
Transparency Life Science is leveraging new digital tools found on the
Internet, crowdsourcing for clinical trial design input and transparency to speed
things along.
Zephyr using a variety of Big Data along with visualization to help pharma
companies speed up the process by gaining access to more targeted information.
GoBalto offers clinicians a software-as-a-service clinical research platform for
“study startup” and workflow management, simplifying some of the most repetitive,
time consuming tasks.
Another noteworthy example is a public/private partnership, called the Scripps
Translational Research Institute Led by Dr. Eric Topol. They are using new
digital tools and adaptive trial design to create faster, better clinical trials with more
comprehensive patient data, enabling new category of products: drug/device
combinations, drug delivery patches/syringes/pumps with physiological sensors,
titration tools, drug companion apps, compliance aids, phase four surveillance tools,
condition/disease tools, condition/disease management tools, etc…



Patients are up in arms! And Judy is going to benefit, because in addition to
new tools, there has been a societal shift where the doctor patient relationship is
changing. Every day there is a new patient community cropping up, with new tools
enabling timelier sharing of more information. These new patient communities come
in many flavors.
For example, Smart Patients allows cancer patients to share information
across cancer types.
Crohnology in Crohn’s disease allows patients to see which types of treatments
may be working for others, and Healclick allows patients to be matched with others
like them.
My Health Teams has a separate site for each disease, believing that users at
their time of need want to find a wide variety of information, resources and social
support that is specific to their experience.
2 new communities help those with Type 1 diabetes - T1D Exchange is a data-
sharing platform for patients while Tidepool gives Type 1 diabetes patients an
aggregated view of their physiologic data from multiple devices.
PatientslikeMe now has 250,000 members with over 2000 disease and just
signed a collaboration with Genentech to uncover new patterns in the data.
On a broader scale, The Society of Participatory Medicine exemplifies this new
normal where patients drive health decisions assisted by their team of health
professionals – not the other way around.
Patients are flexing their power in influencing research. I also see new power
in foundations such as the Multiple Myeloma Foundation which has raised $250
million and in 10 years has gotten 6 drugs approved and improved median survival
from 2.5 years to 8+ years – in a disease that was basically considered untreatable.
In advocacy groups such as American Autoimmune Related Diseases
Association (AARDA) patients and caretakers are promoting collaboration in
research for all autoimmune diseases.
Genetic Alliance network includes more than 1,200 disease-specific advocacy
organizations, as well as thousands of universities, private companies, government
agencies, and public policy organizations. The network is a dynamic and growing
open space for shared resources, creative tools, and innovative programs.
Another example is the Patient-Centered Outcomes Research Initiative
(PCORI) a government-funded project that has patients giving input into research
priorities
When patients exerting new power to move programs along, it’s a good sign for
Judy Jetson.



The time is right for Judy to be helped by the power of collaboration and
sharing. Alongside more patient activism, a more open society of sharing is slowly
extending to data.
Take Sage Bionetworks, which functions as the YouTube of scientific data.
Not only does it give scientists an open-source computational platform, but it also
gives them a common framework to use.
Other new approaches include:
Citizen science groups, such as Ubiome, which is collecting stool samples for
microbiome research
Crowd sourcing: in companies such as Crowdmed, which is using the power of
the crowd to diagnose difficult medical problems
With more patient demand driving the creation of new patient communities,
crowd sourcing health, open science, and data sharing, I am hopeful that the balance
of power will shift to help Judy.




But wait…there are challenges ahead, and this is one reason why we need your
help. Each day brings another data breach. Did anyone shop at Target?
I shopped at Target and had to have my credit card replaced. Notifying all
those merchants, updating Quicken is a pain. The CEO had to resign, and ISS is
making data security an issue at the board level.
Then there is the story of de-identified clinical data being re-identified.
And the latest big breach is Heartbleed, which makes us all wonder about the
quality of Internet security.
This makes me dizzy thinking about the possibility of health data
breaches. How can we have sharing and donation of data without adequate privacy
and security protection? We will need to build upon the privacy work started by
Sage and the Genetic Alliance to fix this.



What we need to do is wage a war on autoimmune disease…
Forty years ago, in 1971, President Nixon declared a War on Cancer. In 2000
the Human Genome Project gave us the pivotal understanding of the varieties of
cancer, based on cell type and not body part. Another leapfrog project is the Cancer
Genome Atlas, a large-scale collaborative effort to characterize the genomic changes
that occur in a community setting. With this new information, the diverse members
of the cancer communities are coming together to collect analyze and share data to
make it useful.
But the treatment of autoimmune disease is 50 years behind! Autoimmune
diseases are still grouped by body part - if you have Crohn’s or Ulcerative Colitis you
see the GI specialist, and if you have joint problems or other aches and pains you see
a Rheumatologist. There is little collaboration or sharing along the entire spectrum
of care. We need all the stakeholders to come together to fuel a war on autoimmune
disease!



When we get together and collect, analyze and share data and knowledge
networks, Judy Jetson, our newly diagnosed Celiac and Crohn’s patient, has a shot at
her precision medicine treatment – getting her own best treatment first! Not at the
end of a painful series of trial and error.
On the omics side, data driven immunology and microbiome research will help
use to better understand the cause of diseases, while nutrigenomics and
metabolomics may help us utilize food as medicine.
New insights into the underlying cause of diseases, along with faster, more
personalized R&D and clinical trials will help Judy get the right drug, or combination
of drugs, herbs and food at the right time.
This shift in thinking about the cause, rather than the symptoms, may enable us
to create effective programs that can conservatively intervene earlier for those known
to be at risk.
For those who have the disease, we can have integrative “autoimmunity”
practices that mix and match tools from both eastern and western medicine. These
practices can be part of global knowledge sharing networks that further our
understanding of what works for whom and when.




Let us use the power of the crowd to come together and figure out how we can
use data and digital tools to ignite precision medicine in autoimmune disease.
The good news is that we have lots of new tools. The bad news is that there is a
lot of suffering…here are 3 things you can do now:
1. Change your thinking. Focus on thinking about the underlying cause of
diseases so that earlier conservative intervention may be possible.
2. I am looking for collaborative partners. Think about ways to collaborate and
share – think systems, circuits, pathways. Brainstorm new ideas for funding,
create think tanks, public/private partnerships, open registries and biobanks.
3. Come tell me of your work, so I can include it in my upcoming research, which
will explore the role of the microbiome in autoimmune disease.
I am here right now today to make sure that we can get started now, so that
Judy and the 50 million other autoimmune patients can have a better future.

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