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Friday, July 12, 2019
Applying user experience (UX) design to clinical research: Behind the Scenes Q&A
“Start with the user” is a guiding principle in technology, and the foundation of effective product design. In clinical research, however, studies weren’t historically designed around participants — significantly impacting scientific progress.
From enrollment to study participation, navigating traditional clinical research is complex, contributing to high attrition rates when participants struggle to realize value from their experience. Today, as many as
86% of studies
fail to recruit enough participants, and
30% of participants drop out
after joining. Making it easier for people to participate in research, so important treatments can get to patients faster, was the impetus for Project Baseline.
But what does providing a “great user experience” actually mean in clinical research , and how does this philosophy deliver tangible benefits to people? Realizing the vision of more patient and participant-centric experiences can start with user-centered design. If we applied the UX lens of consumer technology to clinical research, could we make participation more seamless, engaging, and valuable for people?
To help people discover and participate in clinical research, researchers and designers on the Project Baseline UX team focus on understanding participants’ needs and goals. We sat down with Christine Wu, a UX designer, and Kaylyn Frazier, UX researcher, to learn more about improving participants’ journey with Project Baseline by walking a mile in their shoes.
How would you define a “great user experience?” What are the building blocks?
Kaylyn, UX researcher:
Fundamentally, a great experience is both
useful
and
usable
. You could create something that’s really easy to use, but doesn’t actually add value or solve a real problem for the user. This means you’ve created the wrong product or service, while designing this useless thing well. On the flip side, you may have a brilliant product idea that addresses a real pain point, but users can’t figure out how the heck to use it! In this case, you’ve developed the right product … but designed it in a sub-optimal way.
Christine, UX designer
: To build on Kaylyn’s answer: good user experiences help people accomplish what they want or need easily, eliminating anything extra that could get in the way. Great user experiences achieve all this while also making it enjoyable!
It’s typical to hear about user-centered design in technology. In clinical research and life sciences more broadly, however, Project Baseline’s focus on UX is uncommon. What does “starting with the user” mean to you, and how does it impact your work?
Christine:
To me, this means that as designers, we make no assumptions: we take the time to deeply understand people’s needs, motivations, and pain points. Especially when what we’re creating impacts how people engage with their health, it’s incredibly important that we start with an accurate picture of who we are designing for — for example, how old are they? Where are they from? How comfortable are they with health-related data and different types of technology?
Once we know this, we need to pinpoint any barriers to accomplishing their goals, and how we can help simplify them.This helps us understand their motivations for using what we make. Knowing why someone is interacting with us in the first place enables us to deliver value that makes them want to return.
This is why it’s key to collaborate closely with researchers like Kaylyn, because she helps us get to know who our users are. That way, we can ensure we’re building the right thing, and designing it in a way that suits their needs.
Kaylyn:
We’re fortunate enough to have both dedicated UX designers and UX researchers. This means we can think critically about the entire end-to-end user experience, from understanding what the person using the experience needs, to helping them achieve their goals in the most intuitive and engaging way.
We always say that an amazing design sometimes seems obvious. The reality is that to get to that state you need to do a lot of in-depth research, brainstorms, user testing and design iterations, and probably revisit the drawing board with your markers and sticky notes many, many times to get it right!
Project Baseline was built around this idea of approaching research differently. We stay focused on this not just by designing for users, but also actively building with them. What does this mean and how does it work?
Kaylyn:
Designing in a vacuum without user feedback would inherently limit our perspective. There isn’t one right way to approach
designing with input from real target users
. It can take the form of one-on-one sessions where you get feedback from one person at a time, and incorporate their ideas. You might recruit several target users to do a group session and brainstorm in real-time, allowing users to build off each other’s insights.
We always start with a study plan that clearly outlines goals, key research questions, and participant criteria. A key part of our design process for all of our studies is a form of research called a
usability session
. Once we have a first pass at a prototype — usually early mockups of a solution we’re developing — we’ll run a few sessions to see how people interact with it. This helps us see what’s working well and where people may be getting stuck or need more information.
Typically we run a few of these sessions, iterate on the design based on initial feedback, then run additional sessions that same week with the new design. We call this a “RITE” study, which stands for Rapid Iterative Testing & Evaluation — it’s definitely rapid!
Christine:
I have the privilege of observing the studies that researchers like Kaylyn run! Usually I’m furiously typing notes or talking with other observers to decide what changes to make. We often make these updates on the fly so the very next participant that comes in sees a new version — and hopefully we get closer to helping them achieve their goals!
This is where Kaylyn is a master: she’s able to rapidly adapt to the new changes during the testing session, and probe to see if it does in fact result in a better experience. Often, it takes many days of research and iterations to arrive at a result that we feel is ready for our software engineering team to start building.
Describe how you have collaborated with participants and what the end result was.
Christine:
This is one of the highlights of my job, and as Kaylyn mentioned, it’s foundational to our design process! One concrete example is the
design of Fitness Reports
with Project Baseline Health Study participants. A designer on the team worked with Kaylyn to run several rounds of interviews and comprehension testing with Health Study participants, which helped improve our data visualizations and identify key features. This input informed the design of the first set of Fitness Reports recently launched to Health Study participants.
What other forms can user research take?
Kaylyn:
What we just discussed is truly the tip of the iceberg; we use all kinds of research methods at Project Baseline. A few common examples are user interviews, usability testing and surveys. However, we also review existing literature, test comprehension of messaging and product experiences, conduct contextual inquiries (a fancy term for asking people questions while you observe them in their natural environments), and a lot more.
The most important thing to remember is that the research
method
is informed by the research
question
you are trying to answer. A usability test, for example, isn’t the ideal method for gauging usefulness or value of a product or service. It is, however, a great tool for identifying tasks that are difficult for users to complete or understand in your product. Interview sessions give you a deep dive into a specific behavior or attitude, whereas surveys shed light on how common a particular behavior, attitude or pain point is across a larger audience. Surveys, however, won’t capture the same
depth
as an interview session.
Another crucial component of UX research is creating a realistic environment. For example, to test participants’ experience with our Sleep Sensor and Study Watch, we
created a bedroom
(mostly out of IKEA furniture) where participants went through the activities.
What project are you most proud of so far from your time at Project Baseline?
Christine:
I loved rethinking the structure of informed consent for research study participation! Informed consent is critical to clinical research: it refers to the ethical and legal requirement to ensure people fully understand the study they’re participating in, any risks involved, and are voluntarily agreeing to participate. Project Baseline’s informed consent was like your standard terms-of-service: a super-long wall of text. When we first did user research, we saw users’ eyes glaze over; very few people read anything and everyone scrolled directly to the bottom to sign what they had not read!
This is a scary thing, especially because there is very important information in the consent document that people should know. We worked with our regulatory and legal team to reduce the amount of text and surface the information in a way that was more digestible, including adding definitions to uncommon terms and illustrations to help people better understand, faster.
Kaylyn:
I’m currently working on a new research project to uncover what drives people to join clinical trials, what prevents people from joining clinical trials, and what type of benefits or value is most appealing to potential participants. I’m excited to delve deeper into this to hopefully create an even better experience for our participants!
Project Baseline members
who participate in product research work hand-in-hand with our researchers and designers to help create the best possible experiences, studies, and technologies.
Learn more
about how you can participate.
Posted by Tina Karimi, Contributing Editor, Verily
Wednesday, July 3, 2019
Researcher Q&A: Advancing health science to improve heart attack and stroke prevention
Inside the Heart Biomarker Study: Cardiology Q&A with researcher Svati Shah
Every 34 seconds in the United States, someone has a heart attack. And approximately every minute,
heart disease claims a life
. Because heart disease is the leading cause of mortality in America — and only growing in prevalence worldwide — leading researchers are dedicated to developing better preventive treatments. For patients who have experienced a heart attack or stroke, predisposing them to subsequent events, these efforts are especially critical.
To learn more, we sat down with Dr. Svati Shah, director of the Duke Adult Cardiovascular Genetics Clinic. Many of her patients have experienced cardiac events, and helping reduce the risk of recurrence is an important part of her practice. Now, Dr. Shah shares her path toward caring for patients with heart-related genetic disorders, and the promise of new research.
Tell us about your background. What drew you to cardiology and genetics?
My passion for research was sparked in college, and I actually studied public health before I went to medical school because I wanted to learn how to do good research. When I was in training to become a cardiologist, I was shocked at how many patients were having heart attacks at an early age, and how your family history had a very strong influence on that. Since then, I have been researching genetic and other risk factors for heart attacks, and I take care of patients who have genetic heart disorders. It’s very inspiring work because patients want to know why they have heart disease — and, often more importantly to them, how to reduce risk for their family members.
How did you get involved with Project Baseline?
As a scientist and doctor, my focus is on genetics, disease prevention, and getting more predictive about health. I wanted to help break new ground on human health through a study that was the first of its kind: the
Project Baseline Health Study
. As a longitudinal study focused on gathering complex health data from diverse patients nationwide, the Health Study was unique. I became a principal investigator on the Health Study in 2017, and because of my cardiology background, partnering on the
Heart Biomarker Study
was a natural progression.
Celebrating the Project Baseline Health Study’s first anniversary in 2018.
The Heart Biomarker Study is an effort to better understand lipoprotein(a), a genetic risk factor for heart disease. Along with my work on the study, I also have a laboratory within the Duke Molecular Physiology Institute that uses new technologies to study DNA and molecules circulating in the blood.
Studying an individual’s unique footprint of blood particles can reveal what diseases they may be predisposed to, and how best to treat them — far more detailed information than we would typically learn during a medical appointment.
Lipoprotein(a), or Lp(a)
, is one of these molecules. I believe strongly that exploring heart disease through the Heart Biomarker Study can help move precision medicine and personalized care forward.
On that note, what is Lp(a)? Why is understanding it better so important?
Lp(a) (pronounced L-P-little-A) is a type of cholesterol that circulates in the blood and is not specifically measured by traditional cholesterol tests. Having high Lp(a) levels doubles your risk of having a first heart attack, and also increases your risk of having another heart attack or stroke. In fact, patients who have treated LDL cholesterol levels (the regularly measured “bad” cholesterol) but who have elevated Lp(a) levels are at increased risk of having another heart attack or stroke.
Can you speak to genetics and risk as it relates to Lp(a)? If we know that high Lp(a) is associated with heart attacks, why do we need more research?
Lp(a) levels are almost completely determined by genetics. In fact, Lp(a) levels are actually controlled by a single gene. While it’s established that Lp(a) is genetic, and high Lp(a) increases your heart disease risk,
we need to know more
. Specifically, we need to know if lowering Lp(a) levels actually leads to better cardiovascular outcomes, and when we should initiate Lp(a) lowering drugs. It’s an exciting area of cardiovascular research and shows promise in helping heart patients.
Is there anything people with elevated Lp(a) can do to lower it today?
While diet and exercise are very important things for patients to do to prevent heart disease through other mechanisms, unfortunately, they do not work well for reducing Lp(a) levels. Some of the newer cholesterol medications have been shown to lower Lp(a) levels, but do not specifically target the Lp(a) particle.
Talk to us a bit about the study design. Why is this research focused on heart attack and stroke survivors?
Unfortunately, recurrent cardiovascular events are common in patients. This is due to many factors and we know some of the risk factors that lead to this, but for a given patient, it’s hard to predict with certainty what their risk is. This study will measure Lp(a) levels in patients who have already suffered a heart attack or stroke and try to understand how a patient’s knowing their Lp(a) levels might change their perception of their future risk.
The Heart Biomarker Study’s goal is advancing science to reduce heart attacks and strokes. For patients who have already had a heart attack or stroke, we need to understand what role new risk factors may play. The Heart Biomarker Study gets us closer, but we can’t do it without patients: they hold the key.
Not many heart patients are aware of their Lp(a) level today, so we’re also looking at how lifestyle or therapeutic choices may change once a patient’s Lp(a) level is known. Gaining insight into these questions is critical to improving heart patient care.
If you’ve experienced a heart attack or stroke, you may be eligible to join the Heart Biomarker Study.
Learn more
and consider getting involved.
Posted by Tina Karimi, Contributing Editor, Verily
Thursday, June 20, 2019
Cardiologist Q&A: Researching a new risk factor for heart disease
Many of us are familiar with cholesterol as a lab value we want to keep under control. Today, scientists are increasingly interested in a similar blood particle we know much less about: lipoprotein(a), or Lp(a). Lp(a) is considered an important new risk factor for heart disease, and a growing body of research suggests it may be key to developing more effective preventive solutions.
The new
Heart Biomarker Study
now joins these efforts to better understand Lp(a), specifically focusing on people who have experienced a heart attack or stroke — a population yet to be fully explored in Lp(a) research.
We sat down with Dr. Michael McConnell, cardiologist and head of Cardiovascular Health at Verily, to get more insight into Lp(a) and learn why the scientific community believes advancing research around this little-understood protein could help improve outcomes for the
85.6 million Americans
affected by heart disease.
Thanks for chatting with us, Mike! To start us off, can you tell us a little about yourself and your journey to cardiology?
Sure thing — my path to medicine was actually not a straight line, since I started as a biomedical engineer. I studied engineering as an undergraduate and graduate student at MIT, and worked summers at a pacemaker company. For an engineer, the heart is actually a really interesting organ: it’s mechanical, electrical, and there are fluid dynamics at work. I wanted to explore cardiology and patient care in even more depth, and combine that with my interest in technology.
After medical school, I trained at Brigham & Women’s Hospital and then spent most of my academic career at Stanford focusing on early disease detection and preventive cardiology. Mobile health devices started to emerge, and I saw an opportunity to use this technology to scale prevention.
Wearable digital devices, like the
Study Watch
used in the Project Baseline Health Study, can help capture health data outside the clinic walls.
Traditional medicine is based on clinical measurements, but so much of health happens on a daily basis and in the real world. Currently, I’m working on developing cardiovascular devices and programs to help drive Verily’s mission of enabling proactive and preventive care. I also continue seeing preventive cardiology patients as a clinical professor of medicine at Stanford.
Dr. McConnell and the Verily team celebrate Wear Red Day for
women’s heart health awareness
.
Heart health is one area where
early intervention can make a huge difference
. Along with my cardiology background, I also happen to have elevated Lp(a) myself, so I’m personally excited to see Project Baseline undertake this research through the
Heart Biomarker Study
. Having high Lp(a) isn’t uncommon — it’s estimated that
one in five
Americans has elevated levels — but more research is needed to determine whether treating Lp(a) can prevent heart disease.
Can you break that down a bit more? What is Lp(a) and why does it matter?
Lp(a) is a lipoprotein
similar to LDL, the ‘bad’ cholesterol that promotes plaque buildup in arteries, which can lead to heart attacks and strokes. One important difference is that LDL cholesterol levels are impacted by diet and exercise. Lp(a) levels, however, are largely determined by genetics. So far, we don’t have evidence that shows it can be significantly affected by lifestyle.
While both LDL and Lp(a) cause diseased arteries, Lp(a) also makes blood more prone to clotting. Generally, blood clotting is a good thing; it heals wounds to prevent blood loss. But what can happen with Lp(a) is that a plaque — the fatty substance that clogs arteries — can tear and prompt your body to form a clot to address it. Because this happens inside the artery, the clot stops blood from reaching the heart. Heart cells then start to die, which is a heart attack. A similar phenomenon can happen in arteries that go to the brain, causing strokes.
Today, the standard measurements we use to gauge heart disease risk include blood pressure and cholesterol. With patients who have a personal or family history of early heart disease, we may look for other contributors. Lp(a) is one of the factors that may be elevated in patients who have experienced heart attacks and strokes.
So to me, there is a large unmet need in identifying who should be routinely screened for Lp(a), and what we should do as a result of the Lp(a) level. Would treating Lp(a) directly reduce the risk of heart attacks and strokes the same way current cholesterol-lowering therapies do? We don’t have enough data to know for sure, but potentially, this could add a critical tool to our arsenal for preventing heart disease, especially among people who are at greater risk.
Reducing risk is an important point. Can you speak to why it’s important to focus on heart attack and stroke survivors as part of this research?
Previous research shows that Lp(a) is associated with a greater risk of having a heart attack or stroke. But we don’t know as much about how it affects what we call secondary risk, namely the chances of experiencing a second event.
Survivors of a heart attack or stroke are typically having their blood pressure and cholesterol treated and monitored closely. To improve our treatment of these patients, and prevent worsening cardiovascular disease, we want to understand how much Lp(a) may affect health relative to the risk factors we treat today.
If you’ve experienced a heart attack or stroke, you may be eligible to join the Heart Biomarker Study.
Learn more
and consider getting involved.
Posted by Tina Karimi, Contributing Editor, Verily
Friday, May 17, 2019
Building the participant-researcher feedback loop for Project Baseline Fitness Reports
Project Baseline is a collaboration between researchers and participants.
Nearly ninety percent of U.S. adults now use
at least one digital tool
to monitor health—from steps to sleeping patterns and more. But beyond optimizing personal wellbeing, can the “quantified self” push the boundaries of science more broadly?
At Project Baseline, we’re on a mission to gather comprehensive health data to create a “baseline” that defines what it truly means to be healthy, and delineate the transition to disease. Our participants take a number of endurance, strength, agility, and balance tests at their annual study site visits, so researchers can aggregate and track changes over time. A key part of this effort is ensuring that participants have insight to their personal data—as well as a voice in how it’s delivered.
In
part 1 of our series on returning results
, we covered Project Baseline’s philosophy on sharing data, and how it differs from the norm in clinical trials. Now, we’ll cover the latest set of individualized health information we returned to participants: the results of their physical fitness tests, or "Fitness Reports.”
Building with participants
For us, delivering useful, interesting information starts by collaborating directly with participants. We aligned on our guiding principles for returning Fitness Reports by interviewing participants and prioritizing what information matters most to them. Our research showed that participants want to understand what their data means in context, and how it may impact both scientific discovery and health. With this foundation in mind, we were able to align on core design questions and considerations, including:
Do participants understand what results mean for their health?
Do reports answer questions participants may have?
Do participants understand what the visual charts are showing them?
What data comparisons do participants want to see?
Delivering more engaging reports
Final Fitness Reports were co-designed by Project Baseline user experience teams and study participants through
user testing and iterations
. We invited diverse participants to review early designs and provide feedback on everything from report navigation to specific data points.
The Fitness Reports cover endurance, agility, balance, and strength. Early versions of these modules included three core portions: a brief summary of the test, the participant’s individual results, and a chart showing how their score compared to those with similar backgrounds.
When giving initial feedback on this structure, participants found much of this data helpful—but questions remained. For instance, people wanted to know whether the comparison data were population averages or study-specific values, an important factor for interpreting the results. They also wanted a more textured explanation of why standing on one leg, for instance, could be an important data point for researchers.
We iterated based on participant input to update the modules with more context all around. When we had comparative data to show participants’ results against other “people like you” across the US population, we included it, and defined these groupings. We also enhanced the test descriptions to include more valuable information on what they can mean for health, including resources for further learning. The final Fitness Reports included the following categories:
Description of the test
, how researchers arrived at results, and what the numbers mean
Results
of each test
Comparisons
to similar individuals
Why this information is helpful
for understanding human health
Useful information
and fun facts about fitness and health
Additional resources
to learn more
The types of information shared and specific components of the reports—such as the additional resources—were often a direct result of participant feedback. Here’s what one module of a Fitness Report on balance looks like today:
Project Baseline participants have detailed health data on physical activity at their fingertips via Fitness Reports.
Prioritizing return of results
Tackling the challenge of returning results takes teamwork and dedicated resources. Along with conducting participant interviews, we established an expert Return of Results Committee focused on establishing clear guidelines and processes. Our committee includes participant advocates and thought leaders in medicine, clinical research, bioethics, and genetics. Read about progress to date and where we’re headed next in
this article
by Dr. Charlene Wong, co-chair of the Return of Results Committee.
Working with participants and experts to share data in an engaging way is one of the most rewarding aspects of Project Baseline. If you’re a Health Study participant, check your app to access your personal Fitness Report. To our participants especially, thank you for your partnership—mapping human health begins with you!
Posted by Tina Karimi, Contributing Editor, Verily
Tuesday, May 14, 2019
Breaking new ground in returning study results to participants
Now more than ever, patients are considered key partners in healthcare. Ninety three percent of hospitals provide patients with
access to health records online
, and evidence shows that highly engaged patients have
better treatment outcomes
.
However, in clinical research, this move toward greater collaboration is still just beginning. Typically, participants in clinical trials have limited visibility into study outcomes and how their data are used in research.
This is where Project Baseline comes in. Project Baseline is unusual because of the breadth and complexity of the data we use to understand human health—as well as our commitment to sharing that data with participants.
Because this hasn’t been done before to this magnitude in clinical research, there are no widespread norms to follow. We’re thinking through how to return data thoughtfully, ethically, and responsibly to minimize unintended consequences—all while exploring what it means to conduct truly human-centric research.
From the beginning of the Project Baseline Health Study in 2017, we made it a priority to return any serious medical findings that require urgent follow-up with a doctor. We also convened a dedicated Return of Results Committee including participant advocates and thought leaders in medicine, clinical research, bioethics, and genetics. This committee is
focused on creating clear standards
that can serve as a new foundation for future clinical research. Their initial findings were
published in 2018
, and additional guidelines are set to follow this year.
In 2018, we also began returning lab results, activity trends, and fitness data with all participants. We’re excited to continue to evolve and expand on these efforts in 2019 and beyond.
Take a look inside how we’re designing our approach to deliver meaningful information.
Returning results starts with participants
Health Study participants contribute data in a number of ways, like lifestyle and health habit surveys, blood samples, and tests completed at their local Project Baseline study site. These tests can include standard assessments of physical strength as well as more specialized tests like eye exams and heart imaging.
Following their initial site visit, Health Study participants receive the full results of their CLIA lab test, which is a comprehensive blood panel including cholesterol, key vitamin levels, liver function, and more. While Project Baseline does not take the place of clinical care, we know participants are interested in what their data may mean for their health. Blood panel results provide a view of a number of health values, which participants can discuss with their healthcare providers if needed.
Next, we wanted to learn more about participants’ preferences in order to deliver useful data on an ongoing basis. Knowing we were navigating new territory—and that participants care deeply about receiving this data—it was important to give participants a voice in the process.
Ultimately, Project Baseline’s mission is to make participation in research easy and engaging. One way we’re aiming to break with tradition is by giving our participants a range of different ways to give us feedback—from quarterly surveys, to interviews, to regular check-ins with participants from the Project Baseline team.
From the Project Baseline enrollment questionnaire, we knew that the opportunity to receive results is the #2 top reason people join, after contributing to research. We probed deeper in a survey last year focusing on what data participants were most interested in getting back. Physical activity data from the Study Watch was one of the top-ranked requests. Data gathered by the Study Watch—a device participants wear to capture step count and other activity data—was also the #1 request from participants in calls and emails to the Project Baseline support team.
To move towards giving participants the visibility they wanted, we launched Study Watch step count in the Project Baseline app in August 2018. More recently, we delivered more detailed reports of participants’ individual physical fitness data. These Fitness Reports outlined the results of the strength and coordination tests participants took part in during their site visits.
Study Watch step count data gives participants insight into their physical activity.
Not only did participants help us prioritize the sequence of results to return, they also played an integral role in the actual design of the reports. The result of close partnership between the Project Baseline team and participants, Fitness Reports were delivered after months of participant-focused research and iteration.
The process involved rounds of participant interviews, as well as hands-on sessions where participants navigated through draft reports and provided feedback on how useful, interesting, and understandable they were. Participants also had the opportunity to review multiple versions of report designs.
To learn more, stay tuned for part 2—we’ll dive deeper into fitness data, collaboration, and how the reports were designed.
Posted by Tina Karimi, Contributing Editor, Verily
Thursday, May 2, 2019
Project Baseline launches Heart Biomarker Study to advance research around new heart disease risk factor
Heart disease causes
one in four
deaths in the United States annually. To combat America’s greatest health threat, Project Baseline today announced the
Heart Biomarker Study
to advance research around a little-understood blood particle that’s considered an emerging risk factor for heart disease: lipoprotein(a).
Lipoprotein(a), or Lp(a), is a biological marker (or “biomarker”) similar to cholesterol: when elevated, it increases the risk of blockages in the arteries that cause heart attacks and strokes.
One in five Americans
is estimated to have high levels of Lp(a), which are determined by genetics
1
. And although existing research suggests that Lp(a) plays a pivotal role in heart health, no targeted treatments are currently available. Today, individuals with high Lp(a) are mostly treated with
statin medications
to manage cholesterol
2
.
As the director of the Duke Adult Cardiovascular Genetics Clinic, I care for patients with heart-related genetic disorders, and their families. Helping patients prevent a recurrence of cardiac events is an important part of my practice, and my core focus as a researcher. For patients with a greater genetic risk profile, I strongly believe that we need more effective preventive treatments. Over the past two years, I’ve worked closely with the Project Baseline team to determine how we may be able to help improve outcomes for the
85.6 million Americans
affected by heart disease. Learning more about Lp(a) — and particularly how it impacts heart patients — could be a key piece of this.
The Heart Biomarker Study is an observational research study that will collect the health records of eligible participants who have experienced a heart attack or stroke. Participants will also learn their Lp(a) level through a specialized blood test at their local lab.
For a cardiology researcher, the opportunity to focus on Lp(a) in heart attack and stroke survivors is compelling. To date, Lp(a) research has not been able to completely understand how levels of the biomarker impact the risk of a second heart attack or stroke among those who have already suffered a cardiac event.
One in four
of the more than 795,000 strokes that occur per year are actually experienced by people who have had a previous stroke. Similarly, about
27% of yearly heart attacks
happen to people who have experienced a heart attack before. The Heart Biomarker Study is specifically designed to help identify how Lp(a) affects this population, in order to better understand how to potentially reduce the risk of subsequent events.
To improve health for all, there are many areas that require deeper scientific exploration. Heart disease, which causes
more than one death per minute
, is one of the most critical. Building on the
Project Baseline Health Study
— a landmark endeavor to delineate the transition from health to disease — the Heart Biomarker Study is an important step in Project Baseline’s mission to map human health.
Research Goes Red
, Project Baseline’s collaboration with the American Heart Association’s Go Red for Women movement, launched in February to improve the representation of women in heart research. Now, the Heart Biomarker Study joins these efforts to increase the speed of discoveries, and ultimately improve healthcare.
If you’ve experienced a heart attack or stroke, you may be eligible to participate in the Heart Biomarker Study.
Learn more
about the Heart Biomarker Study and Lp(a), and consider getting involved.
1. “Understanding Lipoprotein(a),” Lipoprotein(a) Foundation.
2. “Guidelines and Lp(a),” Lipoprotein(a) Foundation.
Posted by Svati Shah, MD, MHS, Professor of Medicine, Division of Cardiology, Duke University School of Medicine
Monday, April 22, 2019
Dr. Reed Tuckson’s insights from the first Project Baseline Advisory Board meeting
Introducing Dr. Reed Tuckson, Chairman of the Project Baseline Advisory Board
When healthcare works, it’s the result of collaboration. From hospital networks to health authorities, patients, payers and more, we all share a common goal: improving outcomes. What we’re not always aligned on is how to get there.
But increasingly, as a result of new partnerships, that’s changing.
As a physician, I’ve had the opportunity to engage in nearly every domain of healthcare over the past 35 years—from clinical practice, to public health policy, to academic research, to private industry. Today, I’m encouraged to see more and more blending of expertise across these traditionally siloed areas. According to the American Hospital Association, for instance,
seven in 10
hospitals and health systems will increase collaboration with other providers and payers on population health by 2023.
Because clinical studies are at the forefront of scientific discovery, I believe research can play a pivotal role in both improving patient outcomes and sparking greater collaboration in healthcare. So does Project Baseline. Recently, Project Baseline convened an Advisory Board representing the healthcare spectrum, from patient advocates and ethicists to leaders in science, public health, and research.
This Board came together for the first time last month to discuss how we close the gap between clinical research and clinical care, strategies for making healthcare data useful, and our obligations to participants and patients who engage in research. Our goal is to create an ongoing forum for sharing insights and ensuring Project Baseline stays focused on people. Here are some of the core takeaways from the discussion.
Closing the gap between research and care
Up-to-date information and clinician-focused resources on clinical studies can be difficult to find. As a Board, we discussed how researchers may be able to create a feedback loop to keep clinicians informed of the latest scientific innovations.
Making data actionable
From wearables to electronic health records and beyond, patient data is growing at a staggering pace. But as we increase our ability to capture more and more information, do we have a strategy for making it useful? Within Project Baseline, we are working to collect and organize many types of health data, from biometric data, to genomic data, to clinical data like medical images. By marrying different data sources, our hope is to break through silos to understand health in new ways.
Staying transparent and providing value to research participants
Patients are more engaged than ever in their own health. Within the United States alone, hundreds of patient advocacy groups have emerged as critical resources, especially within the rare disease community. We have a responsibility to approach participants and patients as true partners.
Each board member brought a unique perspective on approaching research in ways that truly center participants. I’m pleased to introduce them to the Project Baseline community:
Posted by Dr. Reed Tuckson, Chairman, Project Baseline Advisory Board
About Dr. Reed Tuckson:
Reed V. Tuckson, MD, FACP is the managing director of Tuckson Health Connections, LLC, a health and medical care consulting business.
Previously, he served as executive vice president and chief of medical affairs for UnitedHealth Group; senior vice president for professional standards of the American Medical Association; president of the Charles R. Drew University of Medicine and Science; senior vice president of the March of Dimes Birth Defects Foundation; and commissioner of Public Health for the District of Columbia.
Dr. Tuckson is active on numerous public and private boards that encompass biotechnology, data and analytics, clinical research, hospital and ambulatory-based care delivery, and health policy.
Dr. Tuckson has been identified several times by
Modern Healthcare
magazine as one of the “50 Most Powerful Physician Executives” in healthcare, and is active with the National Institutes of Health and the National Academies of Medicine.
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