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!
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. Iâ€™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 NIHâ€™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 â€œmake doâ€ 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.
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
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.