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Friday, March 8, 2019
How research helped map my family’s heart health
Clinical research is key to my family's heart health story.
At some point in my childhood, I lost count of the number of research trials I consented for. As a chronic heart disease patient with an exceptionally rare confluence of a double genetic mutation, I am a prime candidate for many studies launched at my primary care center. I have a folder nearly as thick as my medical record containing copies of all of the consent forms I have signed over the years. I understand my value to these studies. Not only am I a rare genetic presentation of a common heart disease, but I also “am rare” to still be alive.
I was born in a small town just outside of San Francisco, in the days before the dot com boom. Both Bay Area natives, my parents were (and still are) incredibly active. My father went all-American in football during his college years and my mother, sister, and I danced at the same studio. My family firmly believes that a healthy mind is cultivated alongside healthy movement, so my sister and I played sports year round.
It was, therefore, completely shocking to us when — at age 13 — I experienced my first cardiac arrest while running on a treadmill. I shortly thereafter was diagnosed with
hypertrophic cardiomyopathy
, a surprisingly common and serious heart disease which can lead to episodes of cardiac arrest and sudden death. HCM affects the left ventricle of the heart and there currently aren’t any cures. Without proper screening or family history, this disease is often diagnosed too late.
While my diagnosis was shocking to us all, the biggest surprise was that I was likely not alone. HCM is an autosomal dominant mutation, which means that the genetic variance is passed down from generation to generation. However, many people diagnosed with HCM do not have any genetic markers as all (that we can yet identify with today’s knowledge). My family was one of the first at our hospital to be tested, as part of a research study, for the presence of HCM in our genes. To our surprise, the results showed that each of my parents carried an identifiable, unique mutation on the same gene for the exact same disease. While my sister managed to avoid either mutation, I received both.
The research was giving us a pristine map of how HCM was affecting our family. But while both my parents carried the gene for HCM, only my father’s heart showed evidence of the disease. Naturally, we were filled with questions. How had he lived so many years without knowing his heart condition? What did this mean for the future? Was he also in danger of a sudden cardiac arrest?
Thanks to advances in research we can now try to predict the trajectory for many people with HCM. For me, it meant knowing around what age I’d be when I’d go into heart failure and require a transplant (spoiler alert: I eventually did have a heart transplant and three years later I’m still here!). It meant having the awareness to test our extended family members for the disease.
It also meant taking the responsibility of spreading awareness: that heart disease can happen to anyone at any age, of any race, of any gender, and for various reasons. The importance of heart health lies in more than just prevention: it is also important to know your family history and to encourage friends and loved ones to get basic testing, in addition to living an active and heart-healthy lifestyle.
As a patient advocate and a survivor of multiple heart conditions, I am so excited about the work Project Baseline and the American Heart Association are venturing into with
Research Goes Red
. Because heart disease can happen to anyone, but disproportionately affects women, people of color, and young athletes
1
, the research community needs to start finding more equitable solutions for all of those affected. Research has saved my life and my loved ones’ lives more times than I can count. I am happy to keep adding to my consent form collection.
1. “
Heart Disease Facts
,” Close the Gap.
Posted by Leilani Graham, Patient Advocate and Community Coordinator, Verily
Tuesday, February 26, 2019
Project Baseline and the American Heart Association’s Go Red For Women movement collaborate to include more women in research
Women have been underrepresented in heart health research. That stops now.
Less than half of American women know the major symptoms of their greatest health threat.
1
While sometimes considered a “man’s disease,” cardiovascular disease causes one in three female deaths annually.
2
To call on women across the United States to join the fight against heart disease, the American Heart Association’s Go Red for Women movement and Project Baseline are joining forces on
Research Goes Red
. A heart-health collaboration focusing specifically on women and heart disease, Research Goes Red aims to empower women to contribute to health research.
Historically, clinical studies have not adequately enrolled women or analyzed women-specific heart health data. Beginning in February, which is American Heart Month, women can
join Research Goes Red
. They may have opportunities to take part in surveys and focus groups, contribute data for clinical research projects, and test new tools and technologies in the years to come. With Research Goes Red, contributing to heart research doesn’t have to involve taking medication or donating blood—just a desire to advance women’s heart health.
Improving the diversity of clinical studies is key to creating health solutions that work for everyone. “This is an opportunity for women to stand up for their health and participate in research that could increase our understanding of heart disease and prevention,” said Nancy Brown, chief executive officer, American Heart Association. “We are thrilled to collaborate with Verily on bringing Research Goes Red to Project Baseline, in a world-class clinical research effort that augments the momentum we’ve built with the Go Red for Women movement over the last 15 years.”
At its core, Project Baseline is an initiative dedicated to making research more inclusive and accessible. “Through clinical research we have an opportunity to uncover new insights about health, and by making it easy for individuals to participate, we can develop a comprehensive map that could inform treatment or care decisions,” said Jessica Mega, chief medical and scientific officer, Verily. “Collaborating with the American Heart Association through Project Baseline will help inform more women about the value of participating in research, how to contribute, and a new way to ‘Go Red.’”
Want to know more about how the American Heart Association and Project Baseline are working to improve women’s heart health? Learn more about
Research Goes Red
and join us on the American Heart Association’s
Facebook page
on February 28 to wrap up American Heart Month! Nancy Brown and Jessica Mega are teaming up for a 30-minute Research Goes Red Facebook Live at 3 p.m. PST / 6 p.m. EST. We hope to see you there!
1. American Heart Association and American Stroke Association, “
Cardiovascular Disease, Women’s No.1 Health Threat
.”
2. Liu, K. A., & Mager, N. A. (2016). Women's involvement in clinical trials: historical perspective and future implications. Pharmacy practice, 14(1), 708.
Posted by Tina Karimi, Contributing Editor, Verily
Friday, February 8, 2019
New year, new horizons
“New year, new me.” It’s a common resolution, but at Project Baseline, our goal is to stay focused on our core objective: mapping human health. So what’s next in 2019? Over the next year, we’re continuing to build on our mission—and we hope to partner with many more of you.
In addition to our flagship study of human health, Project Baseline will expand to include access to additional research opportunities starting this year. By broadening our horizons with more studies, we hope to democratize access to clinical research, expedite the speed of discoveries, and ultimately improve healthcare. We look forward to sharing more with you as Project Baseline grows, and we encourage you to check out the
new website
!
Going forward, our inaugural study—now referred to as the Project Baseline Health Study—will continue to anchor everything we do at Project Baseline. For current Health Study participants, you can expect to continue to receive regular email updates from us, and, as always, follow along with us here and on
Facebook
. Thank you for helping us pioneer the foundation of Project Baseline—and stay tuned for what’s next!
Posted by Tina Karimi, Contributing Editor, Verily
Tuesday, December 18, 2018
2019 Predictions from Project Baseline - and our top 5 2018 moments
Mapping human health starts with study participants.
As 2018 draws to a close, we’re looking back on a year of evolution and growth within Project Baseline—and feeling thankful. Thanks to the efforts of our participants—the Baseline Explorers—and study teams across the country, we’ve grown by leaps and bounds toward our ultimate goal of mapping human health. And there’s more on the horizon.
Looking forward to 2019, we asked our team: how do you see Project Baseline, and healthcare, evolving in the year to come?
“Over the next year, we will continue to learn about the interplay between physical health and mental health, with respect to both wellness and illness. Evaluating and collaborating with the patient as a whole, rather than assessing one condition at a time, will enable more and more successful disease interventions.”
-
Dave P. Miller, Head of Biostatistics and Epidemiology
“Aside from the opportunity to create huge impact within healthcare, the most exciting part of Project Baseline to me is the people. From continuing to partner with participants in our inaugural study, to collaborating closely with patient advocacy groups and other thought leaders, I look forward to growing this community and strengthening the connections between people with diverse backgrounds and expertise."
-
Kasley Killam, Community Engagement Manager
“Project Baseline is creating tools and technologies to collect, organize and analyze health information, including a rich data platform. In 2019, we expect to scale our infrastructure, enable the analysis of multiple health data streams and automate data curation. This will help us advance the mission of Project Baseline."
-
Dimitrios Antos, Software Engineering Lead, Project Baseline
“My prediction for 2019 is greater democratization of clinical research. At Project Baseline and Verily more broadly, we're focused on bridging the gap between clinical research and clinical care by using technology and tools that transcend the four walls of a clinic to fit seamlessly into daily life. In addition, we partner closely with physicians and researchers to explore how scientific discovery can be translated faster into patient care, wherever a patient may be.”
-
Scarlet Shore, Product Lead, Project Baseline
“Placing patients at the center of healthcare requires bridging the gap between clinical care and clinical research. Through 2019 and beyond, we aim to move toward more accessible, efficient and inclusive research by approaching evidence generation in new ways. This includes removing barriers to participation and ensuring study populations reflect our communities. Ultimately, we hope these changes will help the healthcare industry get life-saving interventions into patients’ hands more quickly.”
-
Jessica Mega, Chief Medical and Scientific Officer
We’re eager to take on these challenges and opportunities, building on the foundation of milestones we’ve achieved together over the past year. Here are a few moments that stand apart from the rest.
2018 in Review: Top 5 Baseline Moments
1.
Baseline Explorers navigate uncharted territory
The Baseline Explorers, a community more than 2,000 strong—with many more waiting to enroll!—began returning for their first annual follow-ups this year. These visits will help our researchers track patterns in health data over time: a critical step toward advancing Project Baseline’s mission to predict and prevent disease. Most importantly, Baseline Explorers report that participating in Project Baseline is helping them learn about their health and making a meaningful difference. When asked about the impact the study has on their lives, responses included:
“I now have a much broader view of my overall health. Literally being a participant probably saved my life!”
"Being a participant has made me more aware of everyday activities and has made me want to be better, to do more exercise, and to eat healthy!”
“Being a participant has given me a sense of contribution to advancement in modern medicine.”
“Project Baseline has made me have hope for my young grandchildren and future generations.”
2.
More precise sleep data, thanks to Explorers!
In partnership with sleep expert and New York Times best-selling author Matthew Walker, Project Baseline researchers developed a sleep diary. The purpose of this tool was to understand how objective measures of sleep, such as information gathered by participants’ sleep sensors, compares to subjective self-reports of sleeping habits.
Objective vs. subjective sleep data: what can we learn with clinical research?
While we are continuing to collect this information from new participants, we’ve already seen an important result. Based on participant responses, we were able to refine the sleep sensor algorithm to make the data more accurate and therefore more useful for researchers.
3.
Meaningful progress in interoperable data
Interoperability, or the ability to connect data between systems, is a challenge in healthcare today. Increasingly, patients and healthcare providers are demanding a simple, fast way to marry data from different sources.
To help, Project Baseline launched a novel way for participants to
share their Medicare claims records with Project Baseline
. Our team was even invited to the White House to present this cutting-edge work!
Project Baseline hits the road, presenting our vision in Washington.
4.
Celebrating Project Baseline’s first anniversary!
Marking a year of Project Baseline with study teams and participants.
For our teams, one of the most rewarding aspects of the study was the opportunity to connect with thousands of participants and their loved ones. A coast-to-coast anniversary celebration brought together researchers, participants, and families to celebrate Project Baseline’s first birthday.
5.
Project Baseline in the news
Our talk at South by Southwest, Empowering People to Own Their Health, was named “best health-track panel!” Former FDA commissioner Rob Califf; Bray Patrick-Lake of Duke University; Scott Jung, Medgadget senior editor and study participant; and Project Baseline platform lead Scarlet Shore discussed the growing need to democratize research.
How can we harness the power of health data?
Project Baseline’s long-term goal of preventing illness before advanced disease states manifest was also covered in the New York Times. “We have always thought that if we learn more about what your body is doing before you become ill, then we would have a much better chance of ideally preventing or at least detecting things early,” said Dr. Sam Ghambir, a top cancer researcher at Stanford University.
To hear more from researchers and participants, including Rosa Gonzalez, Baseline Explorer and
advocate for minority inclusion in clinical research
, check out
the full story
.
2018 was a banner year for Project Baseline, and we’re excited to continue exploring the frontier of human health. See you in 2019!
Posted by Tina Karimi, Contributing Editor, Verily
Tuesday, October 30, 2018
Faces of Baseline: David
David Norlander, Baseline Explorer
Shortly after attending the Project Baseline One-Year Anniversary Celebration, and 2.5 years after he began tracking his activity, David Norlander officially hit 10 million steps. At roughly 11,000 steps per day, that’s more than two times the
national average
.
So it may come as a surprise that David, a Project Baseline study participant at Stanford Medicine, is 79 years old.
In fact, David has been giving other athletes a run for their money (no pun intended) for decades. At age 60, he got first place for his age division in the Silicon Valley Half Marathon. At age 72, he got second place for his age division in the California International Marathon. During his best 5k and 10k, he ran an average of 6:42 and 6:51 per mile, respectively.
David’s circuit board award for first place in the Silicon Valley Half Marathon
.
David grew up in Minnesota and spent his career in the Bay Area as an electrical engineer—or, as he put it, a “typical Silicon Valley nerd type.” His work with the U.S. military also took him around the world, including extended overseas assignments in Turkey, Pakistan, Thailand, and Japan.
David’s daughter is a medical doctor and a Type I diabetes researcher who joined the Project Baseline study in November 2017. When she told David about the opportunity to contribute his daily activity data and a range of other health information to research, he joined right away. David also encouraged his former colleague and close friend, Don, to join with him.
Little did they know, a finding from one of the Project Baseline clinical research tests* would trigger David’s doctor to perform a series of follow-up tests and, in July 2018, a surgery that likely saved his life.
David (left) and his good friend Don (right), at the Anniversary Celebration.
In the months that followed, David worked closely with his healthcare team. All the while, he kept going for runs and weekly 10-mile hikes with friends. David had never missed a day of work in his life due to sickness, and he wasn’t about to let mantle cell lymphoma (cancer of white blood cells) or subdural hematoma (blood between the brain and skull) stop him!
“In retrospect,” David shared, “It’s unclear how long it would have taken for the effects of lymphoma to be noticeable.” When asked what he hopes Project Baseline will achieve in the future, David replied, “Finding out what keeps people on a good health path and how to steer people on a bad health path back to good.”
When he turns 80 next year, David plans on running the Avenue of the Giants Marathon in Humboldt Redwoods State Park with his two daughters. David, we’re cheering you on!
*While David's experience is inspiring, it’s important to note that tests conducted in the Project Baseline study are investigational and conducted for the purpose of research, not medical care. Over time, one of our goals is to better understand how to share results so that the information is useful. You can learn more about this topic in
a recent blog post
by the co-chair of our Return of Results Committee and in
this publication
by Project Baseline investigators.
Posted by Kasley Killam, Community Engagement Manager, Verily
Wednesday, October 10, 2018
Faces of Baseline: Rosa
A city in North Carolina will celebrate National Hispanic Heritage Month with its first ever Latin cultural festival, thanks to a Baseline Explorer who organized the event.
Rosa Gonzalez, 57, helped to create the Concord Latin Festival for the same reasons she joined the
Project Baseline
study — to represent and celebrate her heritage as a Mexican American.
“Something that I really like about Baseline is that the whole project is inclusive,” she said. “If you don’t include a group like Hispanics, you are losing part of the whole picture.”
Rosa serves as the president of El Puente Hispano, which translates to the Hispanic Bridge, and she certainly views herself as a bridge builder.
“We have our own light, and we want to shine our light in the community,” she said. “One of our goals is to share our culture with all people throughout the county, and enhance the participation and presence of the Hispanic population here.”
As not only a Project Baseline participant but also a member of the Community Advisory Board, Rosa embraces her role as an ambassador for the study with enthusiasm.
“If I can be part of the solutions for future generations, it’s a great opportunity,” she said. “If I can be a little part of someone else in the future to have better answers for their disease, it’s unbelievable.” Rosa enrolled in Baseline at the Duke University School of Medicine office in Kannapolis, NC. She works for a healthcare system and as a faith ministry nurse at two Catholic churches that serve the Hispanic community.
Look for Rosa at the Concord Latin Festival on Sunday, Oct. 21. ¡Un evento para toda la familia! (An event for the whole family!)
Posted by Emily Ford, Communications, Duke University School of Medicine
Wednesday, September 12, 2018
Unlocking Medicare data for Project Baseline
Getting ahold of medical records can be an uphill battle—often you receive information in the form of faxes and CDs. In a world where digital technology is ubiquitous and central to our everyday lives, access to medical information lags years behind. The systems that hold your medical history also provide challenges; they vary based on which hospital or doctor you visit and often don’t allow for data to be shared from one to the other. The ability to connect health data between systems is called “interoperability” and is a priority for the healthcare industry today.
At
Verily
and
Project Baseline
, we’re focusing on how we can better collect and organize complex health information for research while empowering our participants to access and understand their own health data. We’re excited that a government initiative now provides us the ability to give Project Baseline participants the option to share their Medicare claims data with the study.
Medicare
is a national health insurance program that provides health insurance to 58.5 million Americans. The Center for Medicare and Medicaid Services (CMS) and the United States Digital Service recently developed
Blue Button 2.0
, an application programming interface (or API) that enables Medicare beneficiaries to share their Medicare claims data with healthcare professionals, applications, and research programs they trust. This is a novel achievement and benefits many Medicare beneficiaries by giving them access and control over their health information. As the world’s largest payer, Medicare has the ability to help transform data-sharing in healthcare. Empowering greater access to medical data enables individuals to play a more active role in self-care, and expands the potential for research.
Project Baseline’s mission is to map human health. An important component of this is the ability to access historical health data. Project Baseline plans to collect data over four years, but getting data from prior years will create a broader dataset from which we hope to identify trends or indicators in the transition from health to disease.
So how does Blue Button 2.0 work? We developed tools to allow our participants who have Medicare as their primary form of health insurance to share their claims data with us through the Project Baseline participant portal. We explain to participants how they can access their
MyMedicare.gov
portal account and choose to share their claims data. The Blue Button API enables data to flow into the Project Baseline platform electronically. The process is seamless, and it takes participants less than a few minutes to connect and share their health data swiftly.
We are proud to surface Blue Button 2.0 to Project Baseline participants and unleash the value of historic Medicare claims data to help us understand the full spectrum of their health history. We look forward to exploring other exciting initiatives in the health data interoperability space and sharing them with our participants.
Posted by Grace Farley, Health Economics Program Manager, Verily
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