ENTRIES TAGGED "healthcare"
In which the question of whether research subjects have any rights to their data is pondered.
The GET (Genomes, Environments and Traits) conference is a confluence of parties interested in the advances being made in human genomes, the measurement of how the environment impacts individuals, and how the two come together to produce traits. Sponsored by the organizers of the Personal Genome Project (PGP) at Harvard, it is a two-day event whose topics range from the appropriate amount of access that patients should have to their genetics data to the ways that Hollywood can be convinced to portray genomics more accurately.
It also is a yearly meeting place for the participants in the Personal Genome Project (one of whom is your humble narrator), people who have agreed to participate in an “open consent” research model. Among other things, this means that PGP participants agree to let their cell lines be used for any purposes (research or commercial). They also acknowledge ahead of time that because their genomes and phenotypic traits are being released publicly, there is a high likelihood that interested parties may be able to identify them from their data. The long term goal of the PGP is to enroll 100,000 participants and perform whole genome sequencing of their DNA, they currently have nearly 2,300 enrolled participants and have sequenced around 165 genomes.
How our vision for this important conference is shaping the program we hope to present, and how you can get involved
After a strong inaugural event in October 2012, Strata Rx is heading into its second year. My fellow chair, Colin Hill, and I have spent a lot of time thinking about and discussing what we’d like to see on the program this year, and I thought I’d share some of those thoughts for anyone considering submitting a proposal or attending the event. (The Call for Proposals is currently open until April 10.)
One of the most interesting challenges in creating a program about data science in healthcare has been deciding what to leave out. Topics like genomics and cancer research are so vast and complex that they can and do have entire conferences about just them. While we won’t reject a talk for centering on a topic like this, it has to be relevant to one of our larger goals, as well.
What we hope to accomplish with Strata Rx
So what are those larger goals? Well, here are a few of the key ones.
Promote dialog across silos
Right now, there are already a lot of niche conferences for specific groups in healthcare. There are events for specific areas of research, such as oncology and genomics, as previously mentioned. There are also events for specific kinds of people, like pharmaceutical reps, or insurance providers. Those conferences that do cut across the industry are only for one level of people, such as Chief Officers.
We want Strata Rx to convene a broad swath of people with an interest and a stake in the healthcare system: researchers, funders, providers, application developers, patient advocates, board members, insurers, IT staff, legislators, and everyone in between. By starting conversations among these different specialists, and by combining their relative expertise, we believe we can build a stronger community that is better able to solve problems.
We aim to be fire-starters, igniting connections and conversations.
An interview with Fred Smith of the CDC on their open content APIs.
Health care data liquidity (the ability of data to move freely and securely through the system) is an increasingly crucial topic in the era of big data. Most conversations about data liquidity focus on patient data, but other kinds of information need to be able to move freely and securely, too. Enter several government initiatives, including efforts at agencies within the Department of Health and Human Services (HHS) to make their content more easily available.
Fred Smith is team lead for the Interactive Media Technology Team in the Division of News and Electronic Media in the Office of the Associate Director for Communication for the U.S. Centers for Disease Control and Prevention (CDC) in Atlanta. We recently spoke by phone to discuss ways in which the CDC is working to make their information more “liquid”: easier to access, easier to repurpose, and easier to combine with other data sources.
Which data is available from the CDC APIs?
Fred Smith: In essence, what we’re doing is taking our unstructured web content and turning it into a structured database, so we can call an API into it for reuse. It’s making our content available for our partners to build into their websites or applications or whatever they’re building.
Todd Park likes to talk about “liberating data” — well, this is liberating content. What is a more high-value dataset than our own public health messaging? It incorporates not only HTML-based text, but also we’re building this to include multimedia — whether it’s podcasts, images, web badges, or other content — and have all that content be aware of other content based on category or taxonomy. So it will be easy to query, for example: “What content does the CDC have on smoking prevention?”
Five ways we can improve the information we collect to help us solve hard problems in health care.
I was honored to chair O’Reilly’s inaugural edition of Strata Rx, our conference on data science in health care, this past October along with Colin Hill. As we’re beginning to plan this year’s event, I find myself thinking a lot about a theme that emerged from some of the keynotes last fall: in order to solve the problems we’re facing in health care — to lower costs and provide more personal, targeted treatments to patients — we don’t just need more data; we need better data.
Much has been made about the era of big data we find ourselves in. But though the data we collect is straining the limits of our tools and models, we’re still not making the kind of headway we hoped for in areas like health care. So big data isn’t enough. We need better data.
What does it mean to have better data in health care? Here are some things on my list; perhaps you can think of others. Read more…
Dr. Audie Atienza focuses on the intersection of behavioral science, data and healthcare apps.
We're just at the beginning of discovering how to best develop and utilize mobile technology to improve the health of individuals and the public, says Dr. Audie Atienza.
Big data introduces unique healthcare challenges and opportunities.
The proliferation of digital health information, including both clinical and claims information, is creating large datasets and significant opportunity.
From healthcare to finance to emergency response, data holds immense potential to help citizens and government.
The explosion of big data, open data and social data offers new opportunities to address humanity's biggest challenges. The open question is no longer if data can be used for the public good, but how.
A merging of artificial intelligence and healthcare is tougher than many realize.
People will eventually get better care from artificial intelligence, but for now, we should keep the algorithms focused on the data that we know is good and keep the doctors focused on the patients.
Machine-to-machine applications: what they are, what they do, and why they need their own networks.
In machine-to-machine communications, devices and sensors connect with each other or a central server rather than with human beings. Two M2M experts discuss M2M's applications in this interview.
CouchDB proves a good fit for a project with technical limits.
A new project in Zambia is trying to integrate supervisors, clinics, and community healthcare workers into a system that can improve patient service and provide more data. In this interview, Cory Zue explains how CouchDB is playing a role.