The Lybbaverse / events  

November is Arts & Health Month!

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Elizabeth Jameson makes solarplate etchings from MRIs of her brain. 

Founded by the Global Alliance for Arts & Health, formerly known as the Society for the Arts in Healthcare, Arts & Health Month is a time to raise awareness about the arts and health field, which integrates all art forms into health and community settings for therapeutic, educational, and expressive purposes. 

Please join Global Alliance members and supporters, this month, to celebrate the positive impact the arts have on patients and communities worldwide. Help raise awareness about how the arts improve patient outcomes; create safer, more supportive healthcare environments; offer caregivers an opportunity for creativity and self-expression; and benefit communities by engaging people in arts programs aimed at prevention and wellness. 

Let's use our collective voice to advance Arts & Health and show the world the benefits of approaching health creatively.

Improve Care Now: C3N shows how data makes a difference at Strata Rx

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David Fore, Executive Director, Lybba, Michael Seid, PhD Co-PI at C3N, Cinncinati Children’s Hospital, and Lesa Mitchell, VP, Kauffman Foundation are at Strata Rx to share the ongoing lessons in the development of C3N, a project to enable a transparent network for patients, families, and providers to improve health outcomes for Crohn's patients. Key objectives of the project include:

1.     Enabling patients to have access to all their medical data and share it with whomever they want, including caregivers and family members

2.     Creating transparency in our healthcare system and thus give entrepreneurs the opportunity to develop solutions to the now visible pain points

3.     Bringing together entrepreneurs, a network of hospitals, physicians and patients, to test and refine different solutions/interventions to improve health and lower cost in the management of chronic diseases

4.     Developing evidence/data and tools that enable other institutions to follow suit as well as foster innovation within their communitie

The project follows a phased approach to enable prototyping and rapid learning, where prototypes/interventions are launched at a few clinical sites, adjusted based on experience, before being deployed to additional sites. The key set of activities include development of a technology backbone, engagement of an active physician/patient network, creation of an Intellectual Property framework, and a cost assessment methodology in partnership with payers.

The solutions/interventions to be deployed in the project fall in the following two categories:

1.     Patient/Physician activation: numerous approaches that are behavior-based and enabled by technology to make patients more engaged with their care

2.     Redesign of care delivery for continuous/asynchronous care: using technology to optimize the utilization of medical infrastructure in a way that is beneficial to patients and care providers

Spur innovation without sacrificing the rights of patients

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For social innovation week, Lybba fellow Lucky Gunasekara spoke at The Feast conference in New York City. (You can watch it here at minute 60.) At The Feast, 350+ innovators convened to address hands-on challenges in roundtable discussions, turning inspiration into collaborations to make the world better.

Gunasekara's talk centered on the story of a patient named Bianca, a researcher suffering from Crohn’s, who wants to make optimal use of her healthcare data. She already passively pushes data into the healthcare system through records of physical exams and labs for physicians, technicians, and pharmacists to interpret.

The positive side of this scenario, according to Gunasekara, is that her data is “industrial” – it's made by professionals, safe, regulated, and focused on improving care. The negative? It's frozen, fragmented, and while it's created to improve her care, it's not handed to her, to understand and own.

Bianca, and patients like Bianca, need some sense of control; they crave the opportunity to be both active producers and active interpreters of their health. Behavioral research by Robert Sapolsky and Michael Marmot, cited by Gunasekara, shows this control mechanism exists in our cortisol axes and is modulated by our social hierarchies.

The manifestation of this is that patients like Bianca are becoming early adopters of a range of apps and services to measure and control their health and behaviors. Gunasekara notes the advantage for Bianca is that she’s finally getting data on her own terms, so to speak. It may not be healthcare data, per se, but it is health data and it defines and shapes the emergent result equating to how she manages her illness.  

He points out that the major downside, again, is that Bianca still doesn't own her data. The startups that make the apps do, and this raises very thorny questions. 

He says, "It’s indicative of the ongoing debate: How will we spur innovation but not do so at the expense of our patients? We shouldn't monetize personal data at the expense of health equity and personal privacy."

In sum, Gunasekara emphasizes that we need nonprofits, devoted to social good, to take digital conversion software, mobility tracking, food logging via photos, and personal surveys and use those technologies to generate data that Bianca herself can indeed own and leverage for her own purposes.  

UCLA’s Neal Halfon honored by MHAS

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Mental Health Advocacy Services (MHAS) will be honoring Lybba partner, Neal Halfon M.D., M.P.H, Professor of Pediatrics, Public Health and Public Policy, and Director, UCLA Center for Healthier Children, Families & Communities, with an Advocate Award at its Annual Celebration event on Tuesday, October 16, in downtown Los Angeles. Valerie Vanaman, Esq., will also be honored for dedicating her career to ensure that children with mental disabilities have access to services and benefits they need and deserve.

This year, MHAS celebrates 35 years of protecting and advancing the legal rights of children and adults with mental disabilities. Halfon agreed to accept this honor so he could continue to support the important advocacy work that the organization does on behalf of the thousands of children and adults with mental disabilities who continue to fight stigma and discrimination as they struggle to obtain the services and benefits they need to thrive.

Halfon expressed, "The beating of Kelly Thomas at the hands of the Fullerton Police, my own research on the growing number of children with disabling mental health conditions, and the many other daily reminders that mental disabilities are not getting the attention they deserve, have motivated me to focus more of my own professional work on these important issues. Without MHAS's tireless efforts to give voice to the unmet needs for treatment, prevention and other essential mental health services, many more individuals would be unnecessarily suffering, because they cannot get the services they need."

Participants sought for a LAM-related research study

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We are seeking participants for a Lymphangioleiomyomatosis (LAM) research study. To qualify, you must meet one of the following requirements:

1. You are a female who has been diagnosed with LAM

2. You are a female who will serve as a control subject  - someone who does not have a known lung disease, or who has a known lung disease that is not LAM


Understanding LAM

Lymphangioleiomyomatosis (lim-FAN-jee-o-LYE-o-MY-o-ma-TOE-sis) is a rare, fatal, multi-system disease affecting women in their childbearing years. LAM causes destruction throughout the body, often in the lungs, kidneys and lymphatics. This destruction is attributed to migration, clustering, cell signaling and cell-other cell-cell “LAM cell” abnormalities. Over time, patients may progress to respiratory failure as cysts and nodules take over normal lung. There is no known cure or treatment, and the mechanisms of destruction of lung and other tissues in LAM are poorly understood. LAM affects women of all races, nations and economic backgrounds. Between 30,000 and 50,000 women worldwide are estimated to have sporadic pulmonary LAM. Approximately 250,000 women worldwide have the form of LAM linked to a genetic disorder called Tuberous Sclerosis Complex (TSC). LAM is understood to be more sex-specific than breast cancer.


Our Research Study


In a disease that is understood to be more sex-specific than breast cancer, it is remarkable that no broad-based clinical study that we know of has attempted to look at hormone levels in women with LAM and the possible relationship between these and cyclical breathing symptoms or pulmonary decline.  Without minimizing the complexity of this type of investigation, the LAM Treatment Alliance ("LTA") is committed to addressing overlooked areas in innovative ways by leveraging leading-edge technology to keep inquiry rigorous, cost effective and quick. The LTA is especially eager to draw on patients' willingness and ability to accelerate research through knowledge of their most precious asset - their bodies. We are grateful for your time and willingness to consider participating in this pilot study.


We are performing this exploratory pilot study to determine if there is measurable and significant short-term variability in dyspnea (breathlessness) and pulmonary function in LAM patients and whether observed variability in this can be further associated with the menstrual cycle.  This study was motivated by numerous patient anecdotes and questions about variation in breathlessness that some patients believe may be associated with their menstrual cycle. Existing clinical data collected from LAM patients does not provide sufficient insight into short-term changes in breathlessness. This makes it difficult for researchers to validate anecdotes about cyclical changes in breathing.  More data on this topic will provide insights to clinicians and researchers about the role estrogen and/or progesterone may play in LAM. This may affect the course of future research into potential treatments or cures


This study is being directed by Frank Moss and Ian Eslick from the MIT Media Lab at the Massachusetts Institute of Technology (MIT), in collaboration with the LTA on behalf of the global LAM community. It has been created with input from those with expertise in dyspnea and in LAM. The study is being conducted through the LAMsight web portal, funded and supported by the LTA. The LTA is committed to fostering transparent collaboration between patients, researchers and clinicians. LAMsight enables LAM patients to contribute to research in a new and easy way, which gives LAM researchers real-time ongoing access to critical data from the global LAM patient population. We invite you to get involved and spread the word!


Participants will record daily measurements of pulmonary function, ovulation, and dyspnea over a three to five month period. Pulmonary function will be measured by a home spirometer. Ovulation will be measured through the use of an ovulation kit. All materials for the study have been funded by the LTA and will be provided at no cost to participants. For a more detailed explanation of the study design and requirements, please visit: http://www.LAMsight.org/est-public-intro


We anticipate the study to be fully enrolled by September 3, 2012.  


At approximately three months from that date, a preliminary review will be completed to determine if data collected to that point is sufficient for a full analysis.  Depending on the preliminary data review, the study will be complete at that time or continue for another two months.  Within one month of the end of the study, data will be analyzed and a report will be produced.  A link to study results will be posted on LAMsight and distributed to all study participants. All data will be fully de-identified, reported in aggregate form, and available to researchers throughout the world upon request


If you know of someone who might be willing to participate in the study, ask them to contact us at: EstrogenStudy@LAMTreatmentAlliance.org


You can register for the study by first logging into your existing LAMsight account and then clicking on the following link:http://www.LAMsight.org?action=estrogen-study-signup

Questions?  mail to: EstrogenStudy@LAMTreatmentAlliance.org or mail to: eslick@media.mit.edu or hlam@lamtreatmentalliance.com