Project Baseline Blog
The latest news from Project Baseline
2019 Predictions from Project Baseline - and our top 5 2018 moments
Tuesday, December 18, 2018
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
Faces of Baseline: David
Tuesday, October 30, 2018
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
Faces of Baseline: Rosa
Wednesday, October 10, 2018
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
Unlocking Medicare data for Project Baseline
Wednesday, September 12, 2018
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
Baseline Sudoku: What do puzzles and computational biology share in common?
Monday, August 27, 2018
If you’re an avid fan of number and logic puzzles, you’ve probably heard of Dr. Sudoku. He’s a seven-time U.S. Puzzle Champion, three-time World Sudoku Champion, and the author of numerous books and a daily blog about puzzles.
Aside from his fame and acclaim, what you may not know about Dr. Sudoku is that he holds a PhD in chemistry from Harvard University, is the head of computational biology at Verily, and has contributed to Project Baseline since its inception. His real name is Thomas Snyder.
Thanks to Thomas, we not only have a sophisticated program around computational biology, but also a one-of-a-kind, custom sudoku featuring the Project Baseline logo. Here it is for you to print, try, and enjoy!
Instructions: Enter a single digit from 1-9 into each cell so that no digit repeats in any row, column, or 3x3 box.
We sat down with Thomas to learn more about his work and his hopes for what Project Baseline can achieve.
Kasley:
Tell us about your work at Verily.
Thomas:
My background is in immunology and genomics. Back when I joined Verily, I led our multiple sclerosis initiative and was involved with some of the initial pilot studies that set the foundation for the Project Baseline study to launch a few years later.
I’m particularly interested in developing new technologies to read out the immune system. Your adaptive immune system stores memories of everything you’ve experienced from bacteria, viruses, and other pathogens, to environmental exposures. In Project Baseline and in other Verily initiatives, we are looking at the immune system in both healthy and unhealthy people with the goal of developing better diagnostics and more precise therapies for disease, including understanding why the immune system may be overly activated in people with autoimmune disease.
Kasley:
You specialize in both computational biology and puzzles. How are these different or alike?
Thomas:
Both science and puzzles are about problem solving. To get started, you have to determine what you know and don’t know about a problem, choose an approach to begin, and iterate on that approach with other ideas if you get stuck. I regularly solve hundreds of kinds of puzzles, but I’m particularly good at sudoku because I can take one look at the full grid and quickly process the information, such as knowing exactly how many of each digit there are in the grid and where the best spots to make progress are. When I look at a scientific figure, the information processing is the same, and I’m looking for unusual patterns that stand out for further investigation.
The key difference is that with puzzles, you know there’s an answer. With science, there could be multiple answers or one or none. In both cases, the search for the answer should be fun!
Kasley:
What most excites you about Project Baseline?
Thomas:
The breadth and depth of data all in one study from a longitudinally-tracked population. A big challenge in science is trying to connect genotype with phenotype to understand health comprehensively, particularly in early stages of disease. Project Baseline allows us start to bring these together, generating hypotheses to explore more deeply.
Posted by Kasley Killam, Community Engagement Manager, Verily
Faces of Baseline: Gary
Thursday, June 21, 2018
From now on, Gary Quigg will celebrate two milestones every April 11 — his birthday and his Project Baseline study enrollment anniversary.
Gary just happened to enroll in Project Baseline on his 66th birthday. When the study team at Duke University School of Medicine in Kannapolis, N.C. found out, they surprised him with balloons and a cupcake.
“It was a total coincidence,” Gary said. “But it became more significant — what better way to get to spend your birthday than with people who are truly focused on you, and to start my four-year Baseline journey? We had a great time.”
Gary said he joined the Project Baseline study to contribute to medical knowledge and help advance healthcare. As a physician who practices internal medicine, he’s keenly aware of advancements that come from clinical research studies like Project Baseline.
“I just want to feel like I’ve contributed in some small way,” he said. “We usually go through life kind of oblivious to the functions of our body. We just slide along and let nature take its course. It’s good to have something remind us that it is often behavior that determines health outcomes, and I’m hoping that my participation will help me to engage in more healthy behaviors.”
Posted by Emily Ford, Communications, Duke University School of Medicine
A new era of health data: The vision and challenges of returning individual research results
Tuesday, June 5, 2018
We have entered a new era of ubiquitous health data. One in which researchers and clinicians have tools to collect amounts of data not previously imaginable. And one in which the people providing the data—whether a research participant or patient—expect their data to be accessible.
A transparent partnership between researcher and participant is ideal, and has not always been the norm in clinical research. Participants often take part in research without visibility into their data or the outcomes of the research. In large part, the challenge with disclosing results to participants has been due to having the ability to return them in an effective and meaningful way, the substantial time and resources that are required to communicate results back to each participant, and the absence of guidelines for how to approach the myriad of practical and bioethical issues that arise around what to return and how to return it. The medical ethics of separating research from clinical care has historically been a key reason for many studies choosing to not return their research results.
At Project Baseline, we decided that we will prioritize the exploration of providing health information back to participants. We are well aware of the challenges linked to returning results but, in support of our philosophy that we want to take a patient-centric approach to clinical research, we are continuing to work through them.
Because no other study to our knowledge has tried to return as many results as we intend to, we are pushing the envelope into a new and exciting area that we believe creates an opportunity to provide something incredibly valuable to our participants. We have been drawing from many sources to design the policies and processes for returning results, and we are still in the early stages. Central to this work is a committee dedicated to the return of individual research results within the Project Baseline team. Our committee includes participant advocates and thought leaders in clinical medicine, clinical research, bioethics, and genetics.
The other key stakeholders in developing these policies and processes are the people most important to this health data endeavor: participants themselves. We have sought input from participants in the form of surveys, interviews and user-experience research interactions to help match our approach to participant preferences and expectations, and we will continue to do so. We have also turned to researchers in other large clinical studies who have chosen to return some or no results for their perspective and recommendations. And we have explored what private health data companies have made available to their customers for inspiration.
We recently released some of the initial results in the Project Baseline study, which were routine labs collected at each participant’s first study visit. We were careful to distinguish that we are conducting research, not delivering clinical care and encourage participants to bring any questions or concerns about these results to their own clinical providers.
As we look forward to returning more results back to participants, we are continually incorporating participant feedback into the design of what we hope will be even more engaging reports. We are also building a more sophisticated infrastructure to streamline the process of returning results, both for participants and for our study staff. We hope this work will become an early benchmark for other clinical studies in this new era of ubiquitous and ideally more transparent health data. We appreciate the support and patience of our participants and look forward to sharing learnings with the research community.
Posted by Charlene Wong, Pediatrician and co-chair of the Project Baseline Return of Results Committee, Duke School of Medicine and Duke Clinical Research Institute
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