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Kauffman Foundation urges 'jail-breaking' of healthcare system to open up information sharing, recommends issuing 'life certificates' to document events between birth and death,
We start out life with a birth certificate, and end it all with a death certificate. Should we also have a "life certificate" to record everything that happens in between? That's one of the proposals made this week in a new report on mending our broken healthcare system.
Leveraging "Big Data" -- those terabytes and petabytes of information generated on a daily basis -- may be the answer for slowing the upward spiral of healthcare costs. This is one of the conclusions drawn in a new study released by the Ewing Marion Kauffman Foundation, released at The Atlantic's fourth annual Health Care Forum in Washington this week.
Healthcare costs and management are big challenge across the globe. Technology and breakthroughs are advancing healthcare light-years ahead of where it was even a decade ago -- but these developments all have costs. Within the United States, healthcare is delivered and financed via a cobbled-together, ungainly and inefficient patchwork of providers, payers and agencies.
The healthcare industry needs to borrow some of the lessons learned from auto manufacturers and other businesses, the report urges. We propose the “jail-breaking” of health care," the study states. "The current system has locked up. Japanese automakers’ leap forward in productivity came, in the main, not from technological breakthroughs unavailable to Detroit or from out-investing Detroit, but from better use of existing resources: freeing up the knowledge of assembly-line workers, implementing real-time quality controls, reorganizing and streamlining supply chains, and putting the customer at the center of the system. In that sense, the Japanese automakers unlocked a leaner, more productive, more modern form within the confines of an older system."
The most important "jail break" will be opening up the silos of information that exist across the industry, the Kauffman report advocates. The report, "Valuing Health Care: Improving Productivity and Quality," is based on the recommendations of 31 experts from related fields, whom the Kauffman Foundation convened to reframe thinking around the question: "How can the productivity and value of American health care be increased, in both the short-term and long-term?"
While acknowledging that there's no shortage of reports and recommendations for health care reform, the task force took a unique approach to tackling health care value and productivity challenges. "The underlying thread to the recommendations is leveraging big medical data," according to Robert Litan, vice president of research and policy at the Kauffman Foundation and a task force co-organizer.
John Wilbanks, Kauffman senior fellow and an author of the report, explains where this data comes from:
"Using proper safeguards, we need to open the information that is locked in medical offices, hospitals and the files of pharmaceutical and insurance companies. For example, combining larger data sets on drug response with genomic data on patients could steer therapies to the people they are most likely to help. This could substantially reduce the need for trial-and-error medicine, with all its discomforts, high costs and sometimes tragically wrong guesses."
The report urges that the healthcare industry and community work to break down their "silos" of information and encourage "data sharing between research centers, medical offices, pharmaceutical companies, insurance firms and others; and that a new corps of data entrepreneurs be incentivized to collect and analyze existing medical data to discover and then disseminate new therapies."
The report also urges that patients have more access to data as well, particularly as it pertains to treatment options.
Kauffman's team makes the following recommendations for handling Big Data within healthcare:
Portable consent: "Allow patients and research subjects in studies to give their consent for their health data to be included in large research databases."
Data from outside the health care system: "Circumvent the health care system, which is not designed for the collection of data, and legal privacy concerns by collecting health data outside the medical system."
Sharing publicly funded data: "Similar to how the National Institutes of Health already requires the sharing of research funded by the federal government, data developed from federal grants also should be publicly available."
Curating data: "As more data becomes available, the need for interoperability and ease of using the data becomes even more important."
Life certificate: "Birth and death certificates already exist. The 'life certificate' is a bundle of standardized health information that would travel with consumers and accumulate as they pass through health-related gateways: vaccinations, procedures, medications, family history, and so on."
(Photo by the author.)
Apr 25, 2012
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My sister in-law is a medical professional, researcher and college professor. All of her research articles are based upon data gleaned from shared databases, which consolidate data from all over, since it must be provided to the Federal government, who untimately funds medical R&D as well as care. " Circumvent the health care system, which is not designed for the collection of data, and legal privacy concerns by collecting health data outside the medical system". 1. This would be illegal. 2. The health care system is most certainly designed for data collection, since providers can't get paid by the government and/or private insurers without highly detailed data about patient diagnosis and treatment. 3. A patient can give their consent for their medical data to be shared between insurers and providers, but there is no way they can compel any particular research program to share data aquired by them with other databases, since they would be breaking various federal laws. There are other data collection sources, which collect and disseminate information about your health care for a price. Everytime you get a prescription filled at most pharmacies, that data is sold to a data wharehouse company in D.C. which ultimately sells it to drug companies who use it to determine what drugs (theirs or competitors) are being prescribed by which doctors everywhere. If a competitor's drugs are being prescribed by a particular doctor, they make a point to ship samples and marketing materials to the doctor to try to influence him/her to prescribe their product instead. At one point, they hoped to sell directly to patients based upon this data, but congress put the kabal on that idea. So you see, the most important details about your health care are already up for grabs for anybody with the $$$ and a reason to know.
Before retiring I worked in the Health Information Technology field for almost 40 years...the last 7 as a consultant to hospitals all over the USA. While I do not believe in the "big data base in the sky" there has to be a way individuals can keep pertinent information about their health. In my 73 years I have medical information in several hospitals, doctors offices, labs, clinics etc. some of which is important (drug allergies/reactions etc.)to any healthcare provider. I think "Life certificates" (which would be carried by an individual) are a good idea. They would just contain pertinent data (and that would have to be figured out) in order to give life saving information to any health care provider. There are many things I know about my "medical life" but there are other things I have been told that I do not entirely remember and if one is really ill it is a struggle to convey any information.. It is too late for me but for future patients it is a great idea. In the day and age of "flash" drives there should be a way for an individual to keep relevant information and for providers to be able read and assess same.
What this is talking about is sharing your private health history (your "life certificate") with just about anybody who asks. Even attempts at anonymizing data will fail. When past illnesses, medical procedures, and hospitalizations about a person are made available, it's easy to identify the person and from there learn any other sensitive information made available by the life certificate. And with data being collected by literally millions of health workers, it's hard to guarantee the consistency and accuracy of it. It could be useless, and yet the conclusions drawn from it would be taken as gospel truth.