Getting Started
By Todd Park
On behalf of the Department of Health and Human Services (HHS), welcome to the conversation about Open Government!
We are eager to get your thoughts regarding how we can make HHS more transparent to the public, improve accountability, increase opportunities for the public to engage in what we’re doing, and encourage collaboration between our employees, citizens, and the private sector. In this blog, we’ll be exploring these themes on an ongoing basis, and are extremely interested in your feedback.
As a first topic, we’d like to ask you about one of my favorite subjects: data.
HHS sits atop an extraordinary array of data. In addition to more traditional data publishing mechanisms, we are enthusiastic members of the Data.gov community, and have already made over 100 raw data sets and data access tools available on Data.gov. These include:
- Detailed summaries of Medicare expenditures on physician services, which allow the public to understand patterns of Medicare spending and analyze the types of services being delivered to address the health needs of the Medicare population
- Hospital-by-hospital quality performance statistics compiled by Medicare, which can help inform consumer choices regarding where to get care
- A continually updated data set representing all technologies available for licensing from the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), helpful to entrepreneurs and companies looking to drive innovation
- And much more
And we’re just getting started. We believe that increasing public access to HHS data (while ensuring that we continue to protect individual privacy and confidentiality) is key to our ability to deliver on our mission of improving the health and welfare of the nation. Democratizing access to our data will improve public knowledge of what HHS does. It will help illuminate what’s going on with respect to our nation’s health and facilitate action by citizens, providers, patients, researchers, employers, entrepreneurs, civic leaders, and others to improve health and well-being. It could provide the basis for new products and services that help Americans get better health care.
To achieve maximum success in this effort, we need your help. What new HHS data would you like to see us prioritize for publication? What are your thoughts about the quality of the data we’ve already published? What ideas do you have about how the nation can utilize HHS data to generate maximum public good?
Thank you in advance for your ideas and engagement – we appreciate it tremendously!
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Thank you for providing a location for this type of communication. I am a government employee and I am on this website looking for a place to submit an idea to help my institute save some money and work more efficiently. Many government employees care deeply about their jobs and would like to see their work environment evolve over time to maintain productivity and efficiency. Unfortunately, the trend is often towards more bureaucracy. I’m sure many government workers have great ideas, but if they are not in a position of authority within their respective workplace, these ideas never go anywhere. Your Innovations program is great, but it seems to be more geared towards projects that have already received some level of traction. Some of us are not seeking recognition through awards, but rather a voice to let our ideas be heard and hopefully be considered by people that can make them happen. My idea involves the consolidation of service contracts within research facilities. I am a biochemistry technician working in a research laboratory. One of my lesser responsibilities is to maintain the service contracts on the expensive, precision instruments within our lab. There are technicians in labs all over our facility that have similar pieces of equipment and similar responsibilities for maintaining service contracts. Each of us negotiates our contracts independently. As a result, no one can harness the negotiating power of the entire facility with any of these companies. In addition, having lab technicians who lack certain negotiating experience and any financial information regarding the government/company relationship assures the worst possible outcome for the government. As a result, these companies soak us for large amounts that we have no choice but to pay out of our operating funds. It would make infinitely more sense to have a financial officer negotiate a facility wide contract with each of these companies based of a master list of onsite equipment, leaving us technicians to do the experiments that we are trained to do. My supervisor and coworkers think this is a great idea, but the facility manager, who would be the logical person to move such an idea forward, has ignored my comments on many occasions. The only way my idea can work is to have someone above the facility manager tell him to get it done. Thanks for listening.
This is an excellent discussion, thaX. Sanjay
Todd, I entered the Design for America contest and would like to participate in the event next Wednesday you just mentioned in your Gov 2.0 Expo talk.
The ideas about collaborating within the agency and externally are good, but internally in HHS there are still many barriers to doing so. One is that the social media tools on which HHS posts, including Facebook, are sometimes blocked from being accessed from federal computers. Blogs which may contain information relevant to our work are also subject to being blocked. We cannot fully realize an open HHS if its workers are barred from accessing (legal and appropriate) information.
I heard today on NPR that HSS visited Apple and other huge for profits in an effort to learn how to leverage information management for the benefit of us all. Please consider the not for profit models such as consumers union. Turning a profit skews all decisions. When making a "what if" decision, I find that consumer centered organization reveal more of the methods they use and the criteria they use than do multinationals. Whereas a for profit hospital might tout high ideals like "courage" or "hope" a grid that shows how many nurses per floor; transportation access;average cost and percent of mistakes, would guide my hospital choice. Who uses the information generally shapes the way data is presented, please remember we citizens are counting pennies going out and those high tech successful corporations you visited are counting the same pennies coming in. We want to be successful as persons not as corporations. People have complex needs and relationships to attend to. Corporations may be complex but they can afford to ignore anything deemed not profitiable. Citizens, parents, children can not afford such tunnel vision. I would ask that government information was collected and presented in a way that citizens easily absorb. I do not mean dumbed-down. Maps and grids are lean, and information dense. Thank you for providing this space
Develop and OpenHHS Social Strategy Disruptive Technologies: A Holistic, Pragmatic Approach New technologies are emerging at a faster pace than Agencies can swallow. The rate of obsolescence outpaces the pace of change. Despite the new technology flood, Agencies lack a strategy to on-board these disruptions. As a result, they often react, flounder, or simply ignore them. We can solve these problems in four major areas of practice: Leadership and Management: How must leaders change with new technologies? How will this transform Agencies from the inside out? Customer Strategy: How is the public behaving differently online? How can I reach them where they are? Enterprise Strategy: Internal systems are connecting with external - How will I keep up with the dizzying pace? Employees are adopting collaboration and social tools without my control - How should I manage? Innovation and Design: Experimenting on the general public is a bad idea, so how can I learn in a safe place? What vendors and providers should I lean on? Here is a great slideshare webinar to get you started: http://www.slideshare.net/charleneli/developing-a-social-strategy-webinar
I agree with Gary's comment. All data must be available for everyone, for free, in public access. A special attention should be given to conflicts of interest of individual scientists, research teams and institutions. Transparency is badly needed.
As a biomedical researcher, I strongly support the NIH’s approach to ensuring public access to the biomedical literature, and I encourage HHS to extend this framework to its other research agencies. The NIH requires that the full text of manuscripts reporting NIH-funded research be deposited into PubMed Central and made freely available to the public no later than 12 months after publication in a journal. The problem of restricted access to the scientific literature is something that my colleagues and I experience on a daily basis. Although my laboratory does competitively funded, cutting edge research on infectious disease, we find that we must frequently “make do†without articles from the scientific literature that would help this research progress. This is due primarily to the cost of journal subscriptions; journal prices have risen faster than library budgets for many years, and university libraries find themselves in a constant struggle just to maintain the subscriptions they already have. I also teach graduate and medical students, and sometimes find myself teaching what I have access to, rather than what my students most need to know. This does not serve my students well. The access barriers that handicap research, teaching and public health are unacceptable to me as an academic and as a citizen, given the taxpayer investment that funds the research enterprise. I hope HHS will consider expanding the NIH policy to all of its research agencies, including the Centers for Disease Control & Prevention and the Agency for Healthcare Research & Quality.
I agree strongly that open access to taxpayer funded research published in peer review journals must be supported. In fact it should be expanded from the current NIH scheme which now allows a 12 month delay so as to provide immediate access upon publication. There are added reasons to do so. Many DHHS committees and programs solicit community advocate and public participation in specific programs or grants. Public members and their constituents sit on advisory committees and workgroups. The Federal Register continually displays comment opportunities from NIH, CDC, FDA and others with short 30-90 day timelines where only data driven submittals have a chance to be persuasive. Without open access, the public is placed at an unfair disadvantage to bring the most credible and supportable arguments to bear with their input because they will lack the credibility that results from being up to date on science and data. The government does a disservice to itself and its efforts if it solicits the best public input but allows restrictions that keep the public from making credible arguments. Maintaining the status quo results in a catch-22: Many argue incorrectly that the public is not competent to read and appreciate peer reviewed material so their input should carry less weight. The catch is that restricting access is the cause of making it more difficult to submit supportable arguments. Today there are multiple ways to provide open access immediately while maintaining a publishing marketplace, either through per article fees or publication in open access journals. Broader use of these methods will increase the publication impact that investigators look for when they consider publication venues. Prices of journals and articles are currently operating in an artificial captive market that must be altered when taxpayer funded work is at issue.
Amen to all of Gary's comments! Well said! I am a health sciences llibrarian in a small university ibrary and deal regularly with the issue of rising subscription prices and, in consequence, limited access to professional journals.
I would like to second Gary Ward’s comments on the importance of public access to taxpayer-funded research results and datasets. I also applaud the medical librarian who spoke for many of us in the field of medical librarianship. I have worked in a small community hospital medical library and I can attest to the fact that physicians, nurses, pharmacists, physical therapists, speech pathologists and other medical providers are consistently hampered in their ability to provide the best possible care for patients because journal subscriptions are so incredibly expensive that medical librarians have to order articles from the few remaining larger libraries that can afford subscriptions to the commercial journals that contain the key information such clinicians need in order to determine the best course of care. Often, the research detailed in those journals was produced by funding from the NIH and other federal agencies. Thus, millions of ill and injured Americans are being deprived of good medical care on a daily basis simply because of an antiquated, inefficient, manifestly unjust publishing system in which a handful of medical publishers treat publicly-funded research results as their own property, arguing flimsily that they provide crucial editorial services that, in reality, are increasingly being rendered obsolescent by the rise of Open Science, Open Data, online peer review, Medicine 2.0 and scientific social networking. The giants of commercial publishing (as well as professional societies that argue that their publishing operations fund their other supposedly valuable services even as they rip off their own members who would be better off with Open Access publishing than being shafted for subscriptions to journals published by such groups) argue that Open Access somehow is anti-business. It is not. Indeed, Open Access is capitalism at its finest: providing needed public services and creating innovative business models and developing cutting technologies. Witness the rise and rise of the Public Library of Science (PloS). Its journals are attracting the leading scientists in many fields, citation rates for its publications are increasing exponentially and readership is strong. Its rivals (such as Elsevier) claim that Open Access would be an act of “taking” by the federal government. How is that again? Elsevier doesn’t pay the researchers, the patients and healthy volunteers studied in clinical trials. It doesn’t pay for the overheard of the universities and other institutions that conduct the research. The taxpayers shoulder most of those costs. And yet it is the taxpaying citizen who, ill in the hospital, is the one who is made to suffer needlessly because the poor medical librarian has to spend hours of her professional life in consultation with colleagues about the intricacies of copyright laws that govern how many articles from a journal she can order per year and determining how to ensure that she complying with the complex and restrictive copyright regime we put up with heaven knows why given that it hampers to a bizarre and depressing extent the dissemination of medical information rather than facilitating it. Open Access is imperative not only for daily patient care but for the health of our entire biomedical research infrastructure and, therefore, our economic competitiveness as a nation and as a contributor to the well being of the public health status of the entire world, given the U.S.’s role as a leader in the health sciences and related fields. I urge HHS to institute a mandatory rule of deposit in PubMed Central of all publications resulting from taxpayer-funded research six months after publication. The current rule of 12 months is an unnecessary concession to publishers who have fed at the public trough for decades without showing any signs of adjusting to the rise of the Internet and Science 2.0. This is literally a matter of life and death and not a matter that concerns only librarians and those well versed in the arcana of scholarly publishing. As the saying goes, we will all be patients someday. Do we want our doctors to prescribe drugs for us without the best possible data about them? Do we not want our surgeons to know the best way to perform procedures on us? Do we want to see those we love with ALS or breast cancer suffer because promising young researchers can’t afford personal subscriptions to expensive journals and do not happen to work in settings that would provide them with access to them via a research library? And it is not just professional researchers who need Open Access. I happen to love someone with ALS. I subscribed to the leading periodical on that illness and saw the price of it go since just 2007 from around $385 a year to around $850 to now $1,100 for six issues a year. I had to stop subscribing when the price hit $1,100. Thus, I am missing out on information that would enable me and other laypeople to learn of ways we could assist those we love and improve their quality of life and follow the latest research. Open Access is not only for scientists but for average people caring for the chronically ill and who wish to educate themselves on medical matters. Laypeople are potential funders via charitable contributions to foundations that sponsor medical research and boosters of government funding for medical research. If we want to instill respect in average people for medical research, Open Access is one way to do so by providing them evidence of the value in their own lives of such research. Open Access is crucial in these days of the e-patient patient. These are not abstract matters. Many thanks to HHS for asking for our input and soliciting public comment on a matter of public policy that impacts everyone who will ever become ill or who loves someone who is.
I'd like to second Gary Ward's comment, as well. I am Dean of University Libraries at a large midwestern university with a dynamic and growing array of health-related degree programs. Despite a healthy budget for resources, we cannot acquire all of the content our students and faculty need in these fields to do their best work. I strongly concur with his statement that taxpayers fund vital research and cannot typically get access to it unless they are affiliated with a well-funded research institution. Requiring publicly-funded researchers to post their final manuscript in a publicly-accessible repository six or twelve months after publication in a journal is fair and equitable. It also increases the chance that any one piece of taxpayer-funded research will have a timely impact on the public good.
We’d like to see database(s) that contain all relevant information for food, drug, and medical device recalls. Right now much of this information is available only in the form of posted press releases, which are difficult to search. Any posted database on food recalls should include information on the food item, pathogen, and date, as well as be consistent in the amounts recalled—ounces, units, pounds, lots, cans, and so forth. These are all suggestions made by the Center for Science in the Public Interest (CSPI) in testimony before the Food and Drug Administration (FDA) transparency taskforce. (June 24, 2009) Another item of great value for consumers would be a searchable database of food inspection results for both domestic and imported foods. We’d like to see the results of inspections posted within 24 hours, another CSPI recommendation. Also on the food safety information wish list: the FDA’s food inspection work plans, which should include information on how often inspectors are visiting food processing facilities. In the past, the group Food and Water Watch has successfully sued under the Freedom of Information Act (FOIA) for these documents—they ought to be available online, as we reported here. The FDA issues warning letters to companies that violate labeling laws for offenses such as false health claims. On the FDA’s website, you can search them by company, date, and download them, which is helpful. However, it would be good to post this database at HHS.open/gov and also on Data.gov. It is also important to ensure these data are complete. Recently the U.S. General Accountability Office (GAO) criticized the agency because it had neglected to post at least 220 warning letters and had also posted some duplicates. It’s possible to search for documents associated with new drug approvals (NDAs) of prescription drugs and medical devices here. However, the data underlying this search are not available in a database format for downloading, which would be quite useful. In addition, the documents returned here are often in awkward pdf formats that are not searchable by key word, and many documents associated with widely prescribed drugs are often not available, as we reported here. It’s good to see clinicaltrials.gov among the datasets available at HHS.gov/open. However, there are acknowledged problems that these data are incomplete. Last year a study in the Journal of the American Medical Association reported that fewer than half of these trials are reported. In addition, data generally are not available on drugs or medical devices that do not go not go to market, as we reported here. This matter that has been under discussion by the FDA’s transparency task force, as we reported
We like the type of ideas listed by the Sunlight Foundation, and hope the FDA will be acting on these, and additional suggestions submitted during their solicitation of consumer comments on Transparency.
It's great great to release data sets, but unless you tie that to an outreach effort to get web developers making new apps from the data, it won't be particularly useful or interesting to the average citizen, who is not much interested in raw data. Recommend HHS look into contests such as "Apps for Democracy" and "Apps for the Army" coordinated via iStrategy Labs for your next OpenGov step. See my other post on OpenHHS v2.0 for a model for an open platform for preserving, securing, and categorizing the new apps that are made from the data sets in the data.gov data catalogues.