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Sunshine Week: Online health data varies by state

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates AHCJ's social media efforts and edits and manages production of association guides, programs and newsletters.

The Sunshine Week 2009 Survey of State Government Information Online found that while more and more government records are being posted online, some of the most important information is being left offline. And in some cases governments are charging taxpayers to access records that they already paid for, such as death certificates.

Sunshine Week

Sunshine Week 2009:
March 15-21

Sunshine Week is a national initiative to open a dialogue about the importance of open government and freedom of information. Participants include print, broadcast and online news media, civic groups, libraries, nonprofits, schools and others interested in the public’s right to know.

Teams of surveyors scanned government Web sites in every U.S. state to look for 20 different kinds of public records.

The survey (PDF) included nursing home inspection reports, hospital inspection reports and death certificates. It found that nursing home inspection reports are available online in 29 states, hospital inspection reports are available online in 17 states and death certificates are available online in five states.

The report says that “Death certificates are apparently a revenue source for many states, as they charge relatives and “legitimately” interested parties for copies of the records, or farm out the work to a third-party service such as VitalChek. Some states provide historical access online to older death certificates, mostly prior to 1960, although there generally is a fee for hard copies.”

Other health-related highlights in the report:

In Oklahoma, hospital inspection reports are said to be “confidential by statute” and would not be disclosed publicly unless there was a case involving a licensing question or revocation/suspension of a license.

Louisiana: “We have a problem with the legality of it,” a Louisiana Department of Transportation official told the survey reporter who called the office after failing to find bridge inspection reports online. Calls to other Louisiana agencies after finding neither hospital or nursing home inspections, nor environmental citations online yielded otherwise unlinked URLs for information.

Maryland: Nursing home information got high marks for facilitating online search and for allowing users to “compare data in a variety of ways.”

Minnesota: The state’s Department of Human Services says it expects corrections orders and licensing sanctions, not currently posted, to be online “in the near future.”

California: Because the state of California is so large, surveyors looked at whether individual departments and agencies posted their audits and personal financial disclosure forms, including audits from the Department of Health Care Services. They found that the data is not clearly linked from the department’s home page, though it is free to view and download. The most recent audit reports online where from 2007.

Department of Health and Human Services

University of Missouri graduate students reviewed the Web site of the Department of Health and Human Services and reported on what documents are available in electronic reading rooms. The students noted that the HHS Web site is difficult to navigate because it is comprised of so many divisions that “vary in content, organization and utility.”

They found multiple problems with many of the HHS administrative manuals and other documents, including documents that were locked because someone else was viewing them and documents that were not clear about when they were created or modified.

AHCJ: Proposal would be blow to public access

About Pia Christensen

Pia Christensen (@AHCJ_Pia) is the managing editor/online services for AHCJ. She manages the content and development of healthjournalism.org, coordinates AHCJ's social media efforts and edits and manages production of association guides, programs and newsletters.

Legislation introduced in the U.S. House of Representatives on Feb. 3 “would constitute a blow to the public’s right to access vital scientific data” if it goes forward, according to a statement by the Association of Health Care Journalists.

Rep. John Conyers Jr. (D-Mich.)

Rep. John Conyers Jr. (D-Mich.)

The Fair Copyright in Research Works Act, HR 801, introduced by U.S. Rep. John Conyers Jr. and others, would reverse a National Institutes of Health policy that requires federal research grantees to provide their peer-reviewed articles to PubMed Central, a free online database. Under the existing policy, manuscripts resulting from federally-funded research must be made publicly available within 12 months of their publication date.

Read AHCJ’s statement.


Related

See what others are saying about the proposed legislation: