FOI blog to follow throughout the year
Long after Sunshine Week has passed us by we recommend keeping an eye on the Art of Access blog (RSS feed). 
Created by Charles Davis and David Cuillier as a companion to the book of the same name, it’s a regularly updated source of rock-solid news and analysis. Davis, a professor at the Missouri School of Journalism (where AHCJ is based), is the former* executive director of the National Freedom of Information Coalition. University of Arizona professor Cuillier is the chairman of the Society of Professional Journalists’ Freedom of Information Committee.
*An earlier version of this post referred to Davis as the executive director of NFOIC. Ken Bunting has held that position since July 1, 2010. Our apologies for the mistake.
AHCJ leaders hold series of media access meetings with government officials
Filed under: Government, Health journalism, Public health
AHCJ representatives held a series of meetings in Washington, D.C., last week to press for government openness at the state and federal levels.
AHCJ President Charles Ornstein and board member Felice Freyer (chair of the organization’s Right to Know Committee) met with representatives of the Health and Human Services Department, the Food and Drug Administration and the Centers for Medicare & Medicaid Services, as well as 12 newly appointed state health directors organized by the Association of State and Territorial Health Officials.
The federal officials professed a commitment to openness, within limits, and promise to look into specific requests to further that goal. The state health officials, who heard a panel presentation about working effectively with reporters, were receptive and eager to talk with AHCJ about building relationships at the state level.
Read more for details from each meeting …
Related
Freyer will moderate a panel on this topic, “Right to know: Getting information from government agencies,” at Health Journalism 2011. The panel features Peter Ashkenaz, director of communications, FDA Office of Regulatory Affairs; Lisa Chedekel, senior writer and co-founder, Connecticut Health I-Team; Lucy A. Dalglish, executive director, Reporters Committee for Freedom of the Press; and Lilian Peake, M.D., M.P.H., director, Thomas Jefferson Health District, Virginia Department of Health.
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- AHCJ asks FDA to re-evaluate embargo policy
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- Major journalism groups demand agency end newsgathering constraints
- AHCJ objects to federal agencies’ handling of story embargo
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New EHR error-reporting system to keep data confidential
Filed under: Government, Health care reform, Health data, Health journalism
EHRevent.org, a service that will allow health workers to report and track errors associated with electronic health records, has launched with broad support and no small amount of fanfare. In cooperation with the federal government, the new system will be run by the iHealth Alliance and the PDR network. The iHealth Alliance already runs the Health Care Notification Network, while the PDR Network, perhaps best known for their Physicians Desk Reference, already distributes FDA warnings and drug labeling information.
It shows promise, of course, but that promise comes with one hefty caveat for health journalists: The resulting data will be kept under wraps. Wall Street Journal health blogger Katherine Hobson has the details:
The aggregated data will be available to medical societies, liability carriers and agencies such as the FDA, but will remain confidential — and won’t be subject to legal discovery. (The mechanism for this type of information sharing is the patient safety organization, federally sanctioned groups formed by providers, nonprofit groups and other interested parties to analyze data about medical errors. Groups can get aggregated data if they agree to keep it out of the public domain.)
Ky. program a model for improving rural access
Filed under: Health care reform, Hot Health Headline, Public health
As part of his series on rural health, the Wisconsin State Journal’s David Wahlberg traveled down to Appalachian Kentucky to see how state-funded “navigators” had helped improve access to health care in the region with the lowest life expectancy in the nation. There, they help guide the rural poor through the byzantine system and toward free or low-cost care. They’re part of a program called Kentucky Homeplace.
…lay workers live in the communities they serve, which includes most of Appalachian Kentucky. The workers, who receive basic medical training and earn about $25,000 a year, make home visits and address a variety of needs, such as finding low-cost prescription drugs, arranging transportation to doctor’s offices and helping patients follow up on medical tests.
They also make sure homes have heat and running water — and people have food and clothing.
The lay workers get 40 hours of training, and specialize in navigating the local culture and translating medical terminology into words and concepts the locals find more familiar. Their primary role is helping residents find more affordable prescription drugs. According to one of Wahlberg’s sources, “The program, which operates on $2 million in state money a year, helped clients get $28 million worth of free or discounted medications last year.”
The program, started in 1994, “has linked tens of thousands of rural Kentuckians with medical, social and environmental services they otherwise might have done without,” according to the National Rural Health Association, which named Kentucky Homeplace its outstanding rural health program of the year in 2008.
Bill would require public access to research
Filed under: Health journalism, Public health, Public records
Federal agencies would be required to develop policies allowing timely, free, online access to government-funded research under a bill, the Federal Research Public Access Act of 2009 (H.R.5037), moving through the U.S. House of Representatives. A hearing on the subject is scheduled next week (PDF) before the Information Policy, Census and National Archives Subcommittee of the Committee on Oversight and Government Reform.
Pennsylvania Democrat Mike Doyle is sponsoring the bill. Similar legislation was introduced last year but failed to make it through the process.
The bill is supported by the Scholarly Publishing and Academic Resources Coalition and its Alliance for Taxpayer Access, which reports the hearing is open to the public and will be at 2 p.m. on July 29 in the Rayburn House Office Building, room 2154. A list of organizations opposing the bill is at www.openbiomed.info, taken from a letter (PDF) to the Committee on Oversight and Government Reform. Doyle’s site carries text of a letter signed by a number of research universities in support of the bill.
The bill, which would apply to 11 agencies “with extramural research expenditures of over $100 million,” would require that the policies apply to researchers who work for the agencies as well as those funded by the agencies. Specifically, the bill calls for:
- free online public access to final peer-reviewed manuscripts or published versions as soon as practicable, but not later than 6 months after publication in peer-reviewed journals;
- production of an online bibliography of all research papers that are publicly accessible under the policy, with each entry linking to the corresponding free online full text
- long-term preservation of, and free public access to, published research findings
That would require public access to research similar to what’s required by the NIH’s Public Access Policy that was made permanent last year.
Related
AHCJ: Proposal would be blow to public access
Mass. data show how reform could affect access
Filed under: Government, Health data, Health policy, Hot Health Headline
How will the masses of newly insured post-reform patients impact already tight access to primary care? The Boston Globe’s Liz Kowalczyk has found some hints in the latest results from a Massachusetts patient satisfaction survey. The survey involved about 80,000 commercially insured patients and the data is from 2009.
According to new data from the Massachusetts Health Quality Partners, a coalition that includes doctors, hospitals, and health plans, 83 percent of adult patients said when they called their doctor’s office for care they needed right away, they always or almost always got an appointment quickly.
Fewer patients — 78 percent — reported that they always or almost always got an appointment for a routine check-up or after-hours help as soon as they needed it.
To add some context, Kowalczyk compared the results to numbers from the 2007 survey, which was conducted before Massachusetts had fully boarded the expanded coverage train.
Still, said Barbra Rabson, the group’s executive director, the survey showed slight declines in patient access to their doctors, which could be a warning sign of growing strain in the system. “We need to watch this very carefully,” she said.
In addition to the sort of health care access numbers that bear directly upon reform coverage, the survey also included typical consumer satisfaction-oriented questions. By those measures, at least, care in Massachusetts seems to be improving slightly. The one area of decline? Coordination of care.
AHCJ clarifies statement on medical meeting rules
The Association of Health Care Journalists has posted a clarification to a March announcement concerning restrictions on reporters who cover meetings at which medical societies present scientific findings.
The original announcement said that eight organizations ban photography and recording, and AHCJ wrote letters asking them to lift their bans. AHCJ has since learned that only four have outright prohibitions, while the others have varying degrees of restrictions.
“We regret overstating the problem,” said Felice J. Freyer, chair of AHCJ’s Right to Know Committee. “We now know that not all the groups named are equally restrictive. But we continue to be concerned about rules that make it difficult for reporters to get complete, accurate stories. We will strive to work with these organizations to find ways to satisfy both their needs and those of our members.”
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New at HealthJournalism.org
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- Apply for fellowships to attend Health Journalism 2012
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- Tips for print, online journalists to embrace broadcast opportunities
- Numbers reveal how often, or how rarely, states check doctors’ disciplinary records
- How I did it: Falsified charts in nursing homes linked to patient care
- Access Denied: Looking at a lack of health care availability
- Transparency & medical errors: Public reporting of patient harm is a potent force
