ENTRIES TAGGED "health data"
Dr. Stephen Friend on open science and the need for a "GitHub for scientists."
To unlock the potential of health data for the public good, balancing health privacy with innovation will rely on improving informed consent. If the power of big data is to be applied to scientific inquiry in health care, unlocking genetic secrets, finding a cure for breast cancer or “preemptive health care,” changes in scientific culture and technology will both need to occur.
One element of that change could include a health data commons. Another is open access in the research community. Dr. Stephen Friend, the founder of Sage Bionetworks, is one of the foremost advocates of what I think of as “open science.” Earlier in his career, Dr. Friend was a senior vice president at Merck & Co., Inc., where he led the pharmaceutical company’s basic cancer research program.
In a recent interview, Dr. Friend explained what open science means to him and what he’s working on today. For more on the synthesis of open source with genetics, watch Andy Oram’s interview with Dr. Friend and read his series on recombinant research and Sage Congress.
In the age of big data, Deven McGraw emphasizes trust, education and transparency in assuring health privacy.
Society is now faced with how to balance the privacy of the individual patient with the immense social good that could come through great health data sharing. Making health data more open and fluid holds both the potential to be hugely beneficial for patients and enormously harmful. As my colleague Alistair Croll put it this summer, big data may well be a civil rights issue that much of the world doesn’t know about yet.
This will likely be a tension that persists throughout my lifetime as technology spreads around the world. While big data breaches are likely to make headlines, more subtle uses of health data have the potential to enable employers, insurers or governments to discriminate — or worse. Figuring out shopping habits can also allow a company to determine a teenager was pregnant before her father did. People simply don’t realize how much about their lives can be intuited through analysis of their data exhaust.
To unlock the potential of health data for the public good, informed consent must mean something. Patients must be given the information and context for how and why their health data will be used in clear, transparent ways. To do otherwise is to duck the responsibility that comes with the immense power of big data.
In search of an informed opinion on all of these issues, I called up Deven McGraw (@HealthPrivacy), the director of the Health Privacy Project at the Center for Democracy and Technology (CDT). Our interview, lightly edited for content and clarity, follows. Read more…
A call for data scientists, technologists, health professionals, and business leaders to convene.
We are launching a conference at the intersection of health, health care, and data. Why?
Our health care system is in crisis. We are experiencing epidemic levels of obesity, diabetes, and other preventable conditions while at the same time our health care system costs are spiraling higher. Most of us have experienced increasing health care costs in our businesses or have seen our personal share of insurance premiums rise rapidly. Worse, we may be living with a chronic or life-threatening disease while struggling to obtain effective therapies and interventions — finding ourselves lumped in with “average patients” instead of receiving effective care designed to work for our specific situation.
In short, particularly in the United States, we are paying too much for too much care of the wrong kind and getting poor results. All the while our diet and lifestyle failures are demanding even more from the system. In the past few decades we’ve dropped from the world’s best health care system to the 37th, and we seem likely to drop further if things don’t change.
The very public fight over the Affordable Care Act (ACA) has brought this to the fore of our attention, but this is a situation that has been brewing for a long time. With the ACA’s arrival, increasing costs and poor outcomes, at least in part, are going to be the responsibility of the federal government. The fiscal outlook for that responsibility doesn’t look good and solving this crisis is no longer optional; it’s urgent.
There are many reasons for the crisis, and there’s no silver bullet. Health and health care live at the confluence of diet and exercise norms, destructive business incentives, antiquated care models, and a system that has severe learning disabilities. We aren’t preventing the preventable, and once we’re sick we’re paying for procedures and tests instead of results; and those interventions were designed for some non-existent average patient so much of it is wasted. Later we mostly ignore the data that could help the system learn and adapt.
It’s all too easy to be gloomy about the outlook for health and health care, but this is also a moment of great opportunity. We face this crisis armed with vast new data sources, the emerging tools and techniques to analyze them, an ACA policy framework that emphasizes outcomes over procedures, and a growing recognition that these are problems worth solving.
Dyson says it's time to focus on maintaining good health, as opposed to healthcare.
If we look ahead to the next decade, it’s worth wondering whether the way we think about health and health care will have shifted. Will health care technology be a panacea? Will it drive even higher costs, creating a broader divide between digital haves and have-nots? Will opening health data empower patients or empower companies?
As ever, there will be good outcomes and bad outcomes, and not just in the medical sense. There’s a great deal of thought around the potential for mobile applications right now, from the FDA’s potential decision to regulate them to a reported high abandonment rate. There are also significant questions about privacy, patient empowerment and meaningful use of electronic health care records.
When I’ve talked to US CTO Todd Park or Dr. Farzad Mostashari they’ve been excited about the prospect for health data to fuel better dashboards and algorithms to give frontline caregivers access to critical information about people they’re looking after, providing critical insight at the point of contact.
Kathleen Sebelius, the U.S. Secretary for Health and Human Services, said at this year’s Health Datapalooza that venture capital investment in the health care IT area is up 60% since 2009.
Michael Italia on making use of data collected in health care settings.
Michael Italia from Children's Hospital of Philadelphia discusses the tools and methods his team uses to manage health care data.
Rockstars from music, government and industry convened around healthcare at the 2012 Health Datapalooza
Two years ago, the potential of government making health information as useful as weather data may well have felt like an abstraction to many observers. In June 2012, real health apps and services are here, holding the potential to massive disrupt healthcare for the better.
Look inside health data access and you'll see why "ownership" is inadequate for patient information.
Patients, doctors and providers have a unique set of privileges that do not line up exactly with a traditional concept of ownership.
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.
This is an opportunity to rethink how health data flows.
In this digital world, health data that's 36-hours old can only be analyzed as a post-mortem. Health data that's 30-days old is already rotting.
The goal of the Health Data Initiative is to be the NOAA of health data.
The Health Data Initiative’s annual “Health Datapalooza” is behing held June 5-6 in Washington, D.C. The deadline for applications is just a few weeks away (March 30).