Project Baseline Blog
The latest news from Project Baseline
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
Faces of Baseline: Scott
Wednesday, May 16, 2018
Scott Jung, 31, a self-proclaimed “gadget guy,” said he originally joined the Project Baseline study to contribute his health data to a good cause and use cool technology. “I joined the Project Baseline study because I love medical technology, and I love the potential it has for literally transforming and saving lives,” he shared.
Since high school, Scott has felt passionate about medical technology. Now, he’s not only a Senior Editor for Medgadget, but also a biomedical engineer by day at a medical device startup in Silicon Valley and a student by night pursuing a masters in medical product development at San Jose State University. “I’m attracted by the flashing lights. It’s amazing to see the direction technology and specifically sensors and microsensors are heading,” says Scott.
Scott completed his initial site visit at Stanford Medicine and enjoyed the staff’s enthusiasm. He said, “Each staff member expressed a lot of excitement for the study and was very open to share what each test was and why they needed to do it.” This is actually the second study Scott has participated in. A few years back he was a part of an experimental peanut vaccine trial so he was familiar with the general process for participating in a study. Scott says he is driven to participate in studies because of the potential for medical innovation and impact on many people’s health in the future. We are grateful that he continues to volunteer for science advancement!
We are also grateful to Scott for joining our panel at the South by Southwest conference in Austin, Texas, in March. The panel was called “Empowering People to Own Their Own Health Data” and examined how initiatives like Project Baseline and All of Us are developing tools and strategies to bridge the gap between clinical research and clinical care, as well as how we can empower everyday people to understand and manage their health. The panel discussion was led by Verily’s Scarlet Shore and featured Scott, Bray Patrick-Lake, Director of Patient Engagement at Duke Clinical Institute, and Rob Califf, former FDA Commissioner and Verily Advisor. The panel was the first of its kind for Project Baseline and was named the
best health-track panel by MM&M.
During the panel, Scott shared his perspective as both a study participant and a medical technology expert. Going into the study he had low expectations about receiving any type of results, but after receiving a
holiday card with his own unique snowflake
he’s looking forward to seeing what else Project Baseline will be able to share.
Posted by Rachel Taylor, Contributing Editor, Verily
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