The Lybbaverse / films  

Barbra Streisand’s most vital role: raising awareness of women’s heart disease

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Lybba’s filmmaking partner Wondros just completed a film called "The Heart of the Matter" for the Cedars-Sinai Barbra Streisand Women's Heart Center, alerting viewers that cardiovascular disease is the number one killer of women. More specifically, nearly 500,000 women die from it each year (that's more than the total of all cancers combined). 

Here's the story of Streisand's dedication to the cause, reblogged from Cedars-Sinai:

When actress, singer, director, and activist Barbra Streisand met cardiologist Bairey Merz, she was shocked to learn that most heart disease studies focused on male patients, while women cardiology patients were widely viewed – and medically treated – as though they were smaller versions of men. Although heart disease kills more women than men every year, Streisand discovered that women were still playing catch-up when it came to cardiac research and treatment.

"Women around the world are dying in alarming numbers from an epidemic of heart disease," Streisand said. "We can no longer afford the misconception that heart disease is mostly a man's problem. Nothing could be further from the truth. The need for more research into women's heart disease is urgent."

Streisand's support, advocacy and philanthropic commitment have resulted in the newly announced Cedars-Sinai Barbra Streisand Women's Heart Center, to be directed by Merz.

"Women need – and deserve – heart care specific to female hearts," Streisand said.

Streisand has a long association with Cedars-Sinai Medical Center, supporting a regenerative medicine research fund in 2007, then underwriting The Barbra Streisand Women's Cardiovascular Research and Education Program in 2008. In 2011, she received the Cedars-Sinai Board of Governors Humanitarian Award for her efforts on behalf of women's heart health and her many other philanthropic activities.

"Barbra Streisand's leadership allows us to dedicate significant resources to women's heart healthcare education and research," said Eduardo Marbán, MD, PhD, director of the Cedars-Sinai Heart Institute and the Mark S. Siegel Family Professor. "With heart disease the number one killer of women, we need this level of significant investment to find innovative solutions."

As a critical component of the Cedars-Sinai Heart Institute, the Cedars-Sinai Barbra Streisand Women's Heart Center will be focused on providing leading edge healthcare to women with heart disease and developing research that could lead to new treatments.

Research directed by Merz, who leads a multi-center National Heart, Lung, and Blood Institute study on women's heart disease, already has earned Cedars-Sinai a reputation as a world leader in identifying and treating gender differences in heart disease symptoms, causes and outcomes. Some of the key findings that point out the differences between men and women include:

1. Women who have a history of irregular menstrual cycles, estrogen deficiencies and polycystic ovary syndrome may have a higher risk of developing heart disease as they age.

2. Women can have normal angiograms even when they have ischemic heart disease, which affects the small arteries around the heart, and may not be revealed by an angiogram, which is better at detecting developing clots in larger arteries, a condition that predominately affects men.

3. Women are often told their stress tests are normal or that they have "false positives." Bairey Merz says doctors should pay attention to symptoms such as chest pain and shortness of breath rather than relying on a stress test score.

4. Women who exhibit symptoms of ischemic heart disease can benefit from treatments ranging from proper medication to reduce heart attacks and control symptoms, as well as lifestyle changes, such as losing weight, eating a low-fat diet and exercising regularly.

"We are just at the beginning of understanding the differences between the sexes when it comes to heart disease," Merz said. "What we need now are large-scale medical studies that identify tailored diagnostic and therapeutic strategies to optimize outcomes for women and men.

Indivo: lifelong records that live alongside us

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An Indivo X 2.0 overview, created by Lybba’s filmmaking partner Wondros.

Lybba designs and promotes initiatives that improve collaboration between patients and their care providers to expose common cause, promote best care, and enable collective discovery. We focus on better care, on the way to faster cures.

“Gradually, healthcare science is liberating itself from the laboratory. We are the laboratory. Patients can now make and share observations that can benefit their own health and at the same time, improve the wellbeing of all,” according to Lybba Executive Director David Fore.

What’s true for patients is just as true for doctors. Rather than waiting a dozen years for insights to wend their way through the scientific community, clinicians can conduct their own population studies and tailored experiments easily, cheaply, and safely. 

Indivo X 2.0, the newest version of the original patient health platform, is an example of this and a real milestone for patient care. It’s a complete, secure, digital copy of health and wellness information across all sites of care, hosted locally or on the cloud. It’s not just portable, but customizable, open source, and family friendly (parents can manage data for their kids and parents).

When patients choose to share their information with others through platforms like Indivo, it also boosts the speed of research to reduce health care costs, increases quality, and improves health outcomes for all—empowering them to be active, informed participants in their own care and help others, too.

A number of groups and nonprofits have already become Indivo Ecosystem Collaborators, including Childhood Arthritis and Rheumatology Research Alliance (CARRA)DossiaJohnson and JohnsonMassachusetts Department of Public HealthMIT Media LabMyOscarOrange Research LabsRecombinant DataSurescriptsTrialX, and Tudiabetes. They’re helping to develop and improve the Indivo Application Programming Interface (API), making the Indivo platform extensible.

Those interested in joining the collaboration should contact Indivo directly.

“We are the laboratory”: placing better care and faster cures in the patient’s hands

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Members of the Lybba team emphasize the importance of communities of care, in a film created by our partner Wondros.

I just returned from the Sage Bionetworks Commons Congress, where Lybba was asked to define, with other attendees, its commitment to open data networks. The way I see it, Lybba designs and promotes initiatives that improve collaboration between patients and their care providers to expose common cause, promote best care, and enable collective discovery. We focus on better care, on the way to faster cures.

Traditional healthcare nonprofits secure donations by promising to invest in laboratory science in pursuit of a cure, and yet for the most part cures remain as elusive as ever. When such organizations originated 50 years ago, this approach made a certain amount of sense: if you wanted to donate money to fight disease, investing in laboratory science seemed logical because scientists were the ones with the laboratories.

Gradually, healthcare science is liberating itself from the laboratory. We are the laboratory, and we are becoming the scientists, too. With the advent of new healthcare information and communications technologies, patients can now make and share observations that can benefit their own health and at the same time, improve the wellbeing of all. And what is true for patients is just as true for doctors: rather than waiting a dozen years for insights to wend their way through the scientific community, clinicians can conduct their own population studies and tailored experiments easily, cheaply, and safely. But only if they're designed with the particular needs of people in mind, and how they fit into the larger whole.

But what organization has the patient’s needs at heart? Who is positioned to collaborate with doctors, researchers, and policymakers to guide the redesign of the healthcare system in ways that make the best care most broadly available? Lybba's mission is to enlist patients and their caregivers in improving their own care and to connect them with the clinicians, communities, and researchers that can help them make meaningful use of the observations and insights they make. Lybba designs and integrates the information and technology tools that best satisfy the needs of those closest to the needs of the sick.

Take control of your data, to take control of your health

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John Wilbanks advocates for open data in this Science Commons film created by Lybba's partner Wondros. 

It's no secret that we live in a data-driven society. Our telephones spray data to advertisers and application developers, our purchasing patterns allow stores to make finer and finer predictions about our life changes, and our social networking habits provide rich insights into our friends, family, and ourselves. We allow minor siphons from our data stream, like a remote “sniffer” on our car’s brakes to detect how often we jam down hard to stop in return for a lower price on insurance. But the net total of all the siphons we allow is enormous, especially for those of us that use smartphones, Facebook, Apple, Amazon, or Google. Which is to say nearly all of us.

Increasingly our health care is being drawn into the same data-driven world. Calls for “learning health care” and “accountable care” are grounded in the idea that enriched data streams about individuals will lead to better, or at least cheaper, health care. A robust pipeline of new devices is leading to new streams of data about fitness or eating habits and almost every other data point one can imagine about health. More features of smartphones and older devices developed for non-health uses are being repurposed to generate health data, even to the point of tracking typing errors over time from keyboards to infer the onset of dementia (or perhaps a three-martini lunch).

Increasingly our health status can be determined out of these kinds of data. And when we connect these data to more “traditional” health data, such as our medical records or our genome, we can begin to draw a three-dimensional picture of an individual’s health as a state of being, not simply a set of episodes marked by visits to the clinic.

However, we rarely have access to the data that we create; that is turned via algorithm and savvy mathematics into the patterns that drive so much of our commerce and now our health. It is increasingly companies that control data about us. We sign the rights to that data away in return for services and then pay again with our attention to advertising and coupons. This is arguably a bad deal in social networking or smartphone applications, but it’s clearly a bad deal in health and science.

The vast majority of the problems we face in health are complex and multilayered. Diseases like cancer, diabetes, obesity, arthritis, and autism are not simple problems but often convergences of genetics and lifestyles. Data about the individuals who suffer those diseases holds enormous promise to advance our understanding and to intervene effectively with treatments or prevention, but if we buy into the same model of data trading that applies in commerce we are unlikely to realize the full potential of the data we can create and capture. We need a new model for health data, one that comprehends the fundamental character of inquiry and research that we wish to accelerate.

Another reason to buy into data as the center of a new health model is the relatively apolitical nature of data. In a world where the political process is utterly unable to create solutions to health without rancor, vitriol, and horse-trading, data offers a far more neutral approach to lowering health costs and increasing quality of care. But again, although data can be at the center of a new political approach to health, we must design the approach correctly if we wish to see the benefits emerge.

Approaches to data that rely on institutional change have been in place for years and in some cases, decades. To date they have yielded incremental benefits at best. It is very difficult for institutions who have built internal structures to “protect” data from people - not just patients - to suddenly pivot and begin sharing the data in ways that stimulate innovation. Institutional sharing is often done via bilateral agreement, leaving no data out in the open to be built upon or innovated upon. It is a system that shuts out the entrepreneur and the academic alike. It is a system that is uniquely tuned for the large players already in the market. And it is a system that is far more about payment than it is about health.

The good news is that we can change the system from the outside in. Patients increasingly don’t just have the ability to access their own medical records but the government-assured right to it. Patients increasingly have the capacity to generate data on their own via third-party genome-sequencing services and clinical laboratories. And patients increasingly have the capacity to make the data available to researchers directly via the Web.

This, then, is a unique moment in time. We do not yet have the structures of data-driven health care crystallized into a stable system. And we have, through patients, the capacity to construct structures that stand alongside those built by existing institutional players in health. Our challenge is to find a way to motivate and empower those patients to take control of their own health by taking control of their own data and at the same time, lower the resistance of the institutions to the reality of empowered patients by making clear the economic benefits of patient-driven health data. 

Learn more about consent to research now.

Athena Breast Health Network: a collective vision for individualized medicine

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Athena Breast Health Network is a breast health program for over 150,000 women who get their care at University of California medical centersuniting women, physicians, and researchers in an effort to personalize breast cancer prevention, screening, and treatment. Their mission is to save lives by transforming how care is delivered, to learn from patients and create life-changing science.

In fact hundreds of researchers and clinicians affiliated with Athena are studying data to discover new prevention and effective treatment strategies. The goal is to learn from all patients, rather than the women they see directly or those who participate in clinical trials, toward more effective and innovative care options through a population medicine approach.

Patients are offered the opportunity to securely share questionnaire answers and donate de-identified blood and/or saliva with Athena’s research teams. Researchers and physicians use the information extracted to develop plans tailored to individual women’s risk levels and those like them, for generations to come.

Lybba’s filmmaking partner Wondros produced this video to raise awareness about their collective efforts.