The Lybbaverse / research  

It’s All In The Data: Cincinnati Children’s Hospital Gets Wonky To Transform The Health Of Its Community

,

iStock_000022532736XSmallLybba’s partner, Cincinnati Children’s Hospital Medical Center (CCHMC), was recently featured in Forbes’ Profiles in Innovation, a weekly series of interviews with pioneering health leaders who are improving both population and individual health. CCHMC, renowned for children’s cancer care, is now working tirelessly to reduce health disparities in the local Cincinnati community. Its Community Health Initiative, led by program director Robert Kahn, is using comprehensive data collection to implement preventive measures against injury and illness.

An early example from this data collection indicated that particular Cincinnati neighborhoods had high rates of childhood asthma whereas other neighborhoods had virtually none. Neighborhoods with more asthma cases tended to have poor housing conditions, and more families without medical insurance and access to medicines. Since such factors are difficult to detect during a 10-minute conversation in the exam room, CCHMC’s Community Health Initiative partnered with the Cincinnati Health Department and Legal Aid to provide home inspections and legal advocacy. Preliminary data collection, therefore, enabled pattern recognition which led to problem solving and a larger, more sustainable impact on the community.

CCHMC’s commitment to health, not just health care, extends to their James M Anderson Center for Health Systems Excellence where a dedicated team of individuals is re-thinking chronic illness care. For the past several years, Lybba has been working side-by-side with CCHMC’s Anderson Center on the Collaborative Chronic Care Network (C3N), which is using software-based data collection tools to enable patients with chronic illness to become more active participants in their health and to spread discovery amongst doctors and hospitals.

C3N has reported significant increases in remission rates for patients with Inflammatory Bowel Disease (IBD), without the use of new medications. A few weeks ago, C3N was awarded PCORI funding to continue their transformative work in IBD. To learn more about C3N and Lybba’s involvement, visit c3nproject.org.

Read the Forbes article here.

Big data democratization: a new open framework

,

Providing public easement—the new “open”

Most of the definitions in “open” systems have revolved around intellectual property, and of those, the vast majority of successful ones around copyright. The definitions are used to measure licenses, which pass or fail. But data doesn’t exist in a similar intellectual property regime. And data itself is hard to define—especially given that in a computational context, everything is eventually a one or a zero.

We recommend instead of thinking about an “open” system in the traditional sense, to think of it as providing easement or a public path to data. In this model, there are three layers of data:

Private: A trusted organization might be the steward of all information going into, residing in, and leaving a system. Some of that data is owned outright, as well as content, algorithms, technologies, etc., that it has produced on it own or according to partnership agreements.

Trusted: A subset of all data, content, etc., is either the non-exclusive or exclusive property of a partner, according to whatever agreements the lead organization and the partner arrive at. As steward of this property (and in some cases partial owner of that property) the lead organization is obliged to ensure integrity of and access to this property in the system. This property can be used for a range of purposes that may include biomedical research, creation of patents, etc.

Public: The public at large will have access (and in some cases a right) to select data and content in the knowledge base. Contributors to the knowledge base may choose to stipulate a “public good” clause into their agreement with the lead organization requiring the information be made accessible to certain kinds of research initiatives under particular circumstances. In addition, patients may want access to information tied to their personal health record—for instance, in cases when they (or someone on their behalf) input healthcare data into the system in order to obtain benefits from the system.

Data Democratization: Principles

We can develop rudimentary principles and heuristics for democratizing big data. These principles become important in such cases where personal healthcare information blends with information from the knowledge base. For instance, it is widely acknowledged that the accuracy and timeliness of a diagnosis increase dramatically according to the amount of information the physician has about the patient.

1.     The Access Principle: Data democratization is fundamentally about access to data, not solely control of data. Whether the data is held by a government, a corporation, or a nonprofit, or if the data relates to a specific individual and is stored at the individual level, they should have the right to access and download a copy of the data.

2.     The Annotation Principle: We live in a world in which individuals with access to their own data can make gifts of data, and likely over time even investments of data. So when data about specific individuals is provided to individuals, it should carry sufficient annotation so that it can be reused computationally by third parties.

3.     The Transaction Principle: If the company, government, or nonprofit is gathering data about specific individuals in order to subsidize goods or services, that transaction should be specified clearly to individuals at sign up. Users should consent to the service after being offered a clear, layperson-readable summary of the deal. Transactional data relationships are fine—hiding them is not.

4.     The Export Principle: Individuals should be able to export all data about themselves from systems in order to migrate to new systems. All walled gardens must have doorways.

These are not revolutionary principles on their own. Indeed, many of them are implemented in one way or another, at varying levels of completeness, by most major data aggregators. But most aggregators practice selective implementation. One can download Facebook data, but not email contacts, for example.

Annotation is noticeable primarily in its absence. And the terms of use for sites or apps that collect user-level data run to absurd lengths, require graduate-level education to parse, and intentionally hide the fundamental transactional nature of the services. The goal in a “big data democratization” definition is to knit these practices together to allow us to understand the policies of data collectors and providers.

Think of it as the Good Housekeeping seal of approval for big data. For example, foundations making investments in grants can use the principles to understand the outputs in which they invest, and individuals can view the democratization “score” of a service before they decide if it’s worth it. We have long leveraged the social power of quality trademarks, and we can bring the same power of normative scoring into the data world.

Democratization will not likely emerge from the dominant players in data collection and aggregation. It will emerge first from those who already agree with the ideas and principles, many of whom lack access to expensive attorneys, designers, programmers, ideation experts, and more. It will also emerge from those in the funding community who buy into the ideas but lack the experience to distinguish something that is truly democratic from something that simply bears the trimmings of democracy.

Big Data Democratization: Tools

It is vital to focus on tools that embed the previously described principles and can be distributed as a package just as software is distributed. We might even provide a data democratization kit that contains the following, to be adopted by and adapted to multiple ecosystems over time:

Open Designs

• Interaction designs for data sharing

• Operational processes and practices for democratized systems

Open Code

• Open source software for data return to individuals

• Cloud services for applications-based data return to individuals

• Data safe deposit boxes for democratized data

• Cryptographically sound techniques for creating user IDs about individuals

Open Law

• Trademarks that can be community-applied to good, bad, and indifferent data providers

• Terms of use for data collection

• Privacy policy for data distribution

• Consent practices for data collection

• Informed consent with IRB needed in health data collection

• Informed consent with IRB probably needed to make a data gift

• Basic checkbox consent with layperson text probably sufficient elsewhere for data collection

• Selected existing open copyright licenses

• Patent policies for group projects

We’re a proud sponsor of #SageCon

,


Lybba looks forward to next week's Sage Bionetworks Commons Congress, April 19 and 20, in San Francisco. This year, Lybba is a sponsor of “The Truth of Personalized Medicine: Our Commons Future." Sage Bionetworks is piloting components needed to build a biomedical research commons,creating computational models of disease, releasing infrastructure for collaborative data-driven research, and exploring the boundaries of commons-based governance in health and medicine.

After hearing a lot about personalized medicine, what it will be in the future, and seeing some of the progress made by individuals or single organizations, Sage is now considering how to best address this complex and moveable concept. This year, the Congress is not going to center on how the public can help Sage Bionetworks; it’s about how Sage Bionetworks can help the public build the commons.

Lybba looks forward to engaging with the organizations and individuals that are real cornerstones to success in achieving this goal, as we define projects to take on clinical studies, modeling challenges, patient community formation, and moving forward long after the conference is over.

Case Study: C3N & Lybba help kids with Crohn’s disease

,

Client: C3N (Collaborative Chronic Care Network)
 
Based out of Cincinnati Children’s Hospital Medical Center, C3N assists pediatric patients with IBD. Patients and clinicians work together to develop data collection tools, protocols and reports that determine individualized combinations of treatments and lifestyle modifications. By providing a controlled environment for patients to experiment, C3N supports patient activation and encourages self-directed care, while allowing doctors to improve the quality of the clinical experience.
 
The Challenge
 
For patients to participate fully in the C3N, they need to be able to interact with each other, communicate with their clinical care teams, keep track of their symptoms and manage their treatments. C3N needed to provide accessible tools for both patients and care teams to engage both in and out of the doctor’s office.
 
The Strategy
 
Lybba created the C3N platform to help patients track their health between appointments, visualize their health over time via clear and engaging graphics, more easily communicate with their physicians using online and mobile applications, and even choose to share their medical data with other patients and researchers. The system also provides a support mechanism for parents and a quick, easy way for researchers and clinicians to get the data they need to make quality improvement decisions in relation to the care of their patients. By increasing patient engagement, the C3N can transform the experience and outcomes of illness, and accelerate the discovery and application of new knowledge.
 
The Results
 
By combining large data registries and making them accessible and interactive, the C3N Project drives action and innovation to create a more reliable and accountable care delivery system for children and their families dealing with chronic gastrointestinal diseases.  Since beginning in January 2010, C3N has:
  • Assembled a diverse team of experts from medicine, public health, psychology, computer science, film, design, law, sociology and economics. 
  • Created an initial innovation network of more than 100 patients, clinicians, and researchers - all contributing actively to the C3N for IBD. 
  • Designed and put into prototype testing 14 innovations.
  • Won a $12 million grant from the US Agency for Healthcare Research and Quality to build the data and informatics infrastructure for the C3N data network.
  • Put into practice policies for overcoming barriers such as concerns about intellectual property, data sharing and privacy, and medicolegal liability. 
  • Designed the architecture and specifications for the communication and technology platform necessary for patients, families, clinicians, and researchers to collaborate. 


See one patient's success story here.

Murmurations as metaphors for new learning systems

,

Lybba participated in the IDEAS Salon, sponsored by the prestigious University of Toronto School of Medicine, orchestrated by the inventive ideators at Epic Decade, and held at the scenic Cordevalle in San Martin, California, December 14 through 16.

The forum centered on the theme of rediscovering learning, to rethink the knowledge and innovative R&D models needed for the next decade of health and wellness, in essence "to R&D R&D". Each of six predetermined groups was tasked to create a metaphor that might help us do just that.

Themes included collaborative discovery and the return of value to education, given the following precepts:

  • We believe our current models for learning have fallen short.
  • We believe that we have inherited infrastructures designed for the past not the future.
  • Developing learning and knowledge for the next decade of health and wellness is cross-disciplinary cultural practice.
  • We believe we need to reimagine the models and institutions that guide the future of the health and wellness workforce.
  • We believe in a culture of change that is adaptable, responsive to rapid technological developments and able to recast the global frameworks for success in real time.
  • We believe we need new skills to create healthy societies.


Our team included a chief medical information officer of a progressive healthcare company, founders of innovative startups, and directors of established institutes of both mental and public health, and experimental art.

Initially, we all came to the table with our individual concerns that spanned 'chronic disease prevention versus treatment', to the challenges of innovating within the healthcare system that is now in place. Note: With a single-payer system, Canadians do not grapple with many of the issues that plague Americans.

Some of the questions that arose: 

  • Should we publish more failed experiments?
  • How do we include big pharma in a collaborative model?
  • Considering that the healthcare system will be overburdened in the future, how do we maximize happiness now and at the end of life?
  • Should students major in a question, rather than a discipline, to better confront the pressing issues of our time (e.g. global warming and diseases of lifestyle)?


Microexpertise 

In the words of one participant, Roni Zeiger, founder of Smart Patients, “We’ve heard a lot about crowdsourcing, or outsourcing work that one person would normally do to a large and often distributed crowd . . . but there is a related idea of a network of microexperts and how they amplify the collective intelligence of their members.” Much of his recent thinking is inspired by Reinventing Discovery by Michael Nielsen, especially the anecdote between the chess match of the world chess champion Garry Kasparov and quite literally the World—collectively solving problems by popular vote.

Zeiger continued, “Imagine if I summarized a question in a couple sentences +/- a photo, and it was immediately posed to 100 potential experts in my network, who are chosen on a per-question basis using a relatively simple algorithm that matches my question to their experience. And I am good enough a generalist to know which microexpert has the most pertinent recommendation."

CIO of Kaiser Permanente John Mattison also noted the need for diversity, with many different backgrounds and areas of expertise, with the potential of each member of the group to lead at any given time.

Visual artist and associate professor at the Rocky Mountain School of the Arts Bruce Price replied: “What you're describing is a murmuration.” With that, the metaphor of multi-species flocking was created for our group. Though flocks flock primarily to protect themselves, when there is a desire for food and sustenance, they will join forces with other species to forage.


Flocking

Weaving, playgrounds, gardens, and transgenic dandelion metaphors emerged as metaphors from the various groups, firmly rooted in the earth around play and making. We continued to look skyward at murmuration patterns, movement, and directional shifts, and were obsessed with the conditions for flocking. (A starling at the window seemed to offer guidance.) Murmurations have one leader at a time, accommodating the shifting needs of the collective.

'Rules' for flocking are:

  • don’t fly too close
  • don’t fly too far
  • navigate toward the mean
  • do no harm
  • flee predators 


We adapted them to networks of microexpertise (though specific players, processes for serving up questions, and topics of microexpertise remained open):

  • ensure transparency of information and connections
  • offer the greatest access to and greatest accessibility of information
  • align incentives with the needs of multiple users


When we paired up with another group, whose metaphor was the play-garden, we added the following to optimize flocking:

  • maximize public value
  • reduce disparity
  • increase resilience
  • boost value (happiness)
  • ensure sustainability
  • incentivize collaboration
  • do not leave members behind
  • practice basketball-style assists
  • ensure an ecosystem with ample opportunities to connect
  • approach with curiosity and purpose
  • encourage mentorship
  • allow for one leader at a time with collaborative followers
  • teach everyone how to be a leader and a collaborative follower
  • include student feedback in all projects (not just academic)
  • establish pre-collaborative networks and a pilot (task force)
  • determine what influences/generates directional change
  • create a national advisory council and study benefits and risks
  • allocate public funds and principles to guide research
  • activate pay for performance


The salon ended with a synthesis of best practices from all six groups combined (as a transgenic dandelion seed floated by, and many more questions germinated), but that will the subject of a future post.