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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
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