Tablet Tool Harnesses Data from Many Patients for Individual Choices
Just 20 years ago, physicians had no useful treatments to offer patients with multiple sclerosis (MS), the leading cause of disability in young adults, and an extremely variable, autoimmune disease that attacks the brain and spinal cord. Today, although there is still no cure, nine FDA-approved drugs are on the market for MS, and more are expected soon.
That’s good news, but it also can add to patients’ and physicians’ anxiety about which drug to use, says Stephen Hauser, MD, Chair of Neurology at the University of California, San Francisco (UCSF) School of Medicine. MS symptoms can vary, not only from one patient to the next, but also over each patient’s lifetime. “MS is one of the great mysteries in modern medicine,” Hauser says.
Rosalinda Leblanc, 40, of San Francisco considers herself one of the luckier patients living with MS. The biochemist suffers from optical nerve damage and sometimes feels pain in her left eye, but she has been able to keep her symptoms in check. When she was diagnosed in 2004, her doctor recommended the same drug regimen to all his MS patients, regardless of their symptoms. Not knowing what the future held or which drug would work best for her was very upsetting, Leblanc recalls.
Leblanc eventually found her way to UCSF. And now, thanks to a tablet-based tool called BioScreen, she has a much better sense of her current condition and what the future is likely to hold. BioScreen results from a team effort of Hauser’s group led by Pierre-Antoine Gourraud, PhD, MPH.
In MS, episodic bursts of inflammation can disrupt how a person moves, sees, hears, speaks, feels, and thinks. “MS can be just a nuisance, or it can be a rapidly progressive, life-altering disease,” Hauser says. He adds that the condition’s haunting unknowns lead to high rates of depression and divorce.
No clear rules guide selection among MS therapies or decisions about starting, changing, or ending treatments. To make better informed decisions, MS patients and their clinicians need medical information presented in a coherent and organized fashion.
Over the past decade, Hauser’s research team has collected voluminous data from 800 MS patients, including Leblanc, following each for more than eight years. A patient’s entry in BioScreen includes brain-imaging, genetic, physiological, blood-chemistry, and environmental-exposure data. It also describes the disease course and treatment. BioScreen applies proprietary algorithms to visualize the data, compare individual profiles to those of others with similar characteristics, and guide the choice of treatment for each patient.
BioScreen was originally designed for researchers and physicians. But with the Patient-Centered Outcomes Research Institute (PCORI) Pilot Project funding, the UCSF team is converting the tool into an accessible source of information for patients to use with guidance from their clinicians. Input from community members with expertise in emerging technologies and legal and administrative issues has helped the researchers create a secure digital portal to a library of up-to-date, anonymous clinical information. BioScreen is intended to improve care by fostering patients’ interactions with clinicians, self-reporting of clinical information, and compliance to treatment plans.
BioScreen can demystify MS for patients, Gourraud notes. For example, it can tell them where they rank according to the severity of their symptoms or their genetic makeup. It’s akin to a pediatrician telling parents where their child falls on standardized height and weight charts.
This ability to see their personal data compared to others has made our patients feel more engaged and empowered.
Pierre-Antoine Gourraud, PhD, MPH PCORI-funded Principal Co-Investigator
Patients are guiding BioScreen’s future development in several ways. Leblanc and a dozen or so other patient partners have indicated which treatment factors are most important to them. The researchers were surprised, for example, by how highly patients ranked the frequency at which they need to take their drugs. The patient partners have also tested BioScreen prototypes.
The project’s eventual goal is to make predictions about the evolution of a patient’s disease. “With BioScreen,” Gourraud explains, “we can say, ‘We have five possibilities for picking a drug for you. Let’s look at patients who two years ago were at the same stage as you now.’ Your personal decision is now informed by real data. The more patients we add to the BioScreen, the more this evidence base will grow—and the more accurately we can predict the future of every patient.”
“This information is really powerful,” says Leblanc, who adds that her UCSF doctors used BioScreen to compare her to 45 other patients with mild MS. “When I saw my own data, I felt relieved. I’m pretty stable, and the trajectory is pretty good.”
Gourraud says, “Two years ago, we predicted Rosalinda would remain stable, and she has.” The researchers recently surveyed 157 patients about their attitudes toward BioScreen. More than 90 percent said they’d be interested in using a secure software application to compare their clinical data to those of other patients, and almost the same percentage said they would be willing to enter their health information personally on a secure web portal to advance MS research.
"In our clinic right now, patients can access their information on a tablet device via the BioScreen application," says Gourraud. "This ability to see their personal data compared to others has made our patients feel more engaged and empowered. They take a more active role when the critical decisions are being made—and they're more willing to stick with their treatment plans."
"With a chronic and complex disease like MS, there are very personal treatment decisions that must be made by patients," Hauser observes. "They may think to themselves, 'How do I feel about the unlikely, yet not impossible, event of a life-threatening side effect of this medicine?’ The BioScreen provides an evidence basis for the range of possible options so that patients can make the most informed decisions possible."
“This is going to be the future of medicine,” says Leblanc. “BioScreen is a powerful device and a really great education tool.”
Posted: September 10, 2013
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