EPA Chemical Access Tool gives health/safety information on manufactured chemicals

The EPA Chemical Access Tool is intended for individuals interested in learning more about chemicals that are manufactured or imported into the United States. This tool contains health and safety information submitted to EPA under the Toxic Substances Control Act (TSCA).

From the about page

The new chemical access tool enables you to search the following databases:

eDoc – The eDoc database includes a broad range of health and safety information reported by industry under TSCA Sections 4,5, 8(d), and 8(e).
TSCATS – The TSCA Test Submissions (TSCATS) database is an online index to unpublished, nonconfidential studies covering chemical testing results and adverse effects of chemicals on health and ecological systems.

HPVIS – The High Production Volume Information System (HPVIS) is a database that provides access to health and environmental effects information obtained through the High Production Volume (HPV) Challenge.

In some instances the search tool makes this information accessible for the first time. It provides results based on data that currently is in a searchable format. The amount of searchable data will increase over time as additional information either is reported to the Agency electronically or is scanned from historically submitted documents. If you do not receive results for a particular chemical, it does not mean EPA does not have information on that chemical; the results may not be in the repository yet. If you have questions or comments on this search tool, please contact Diane Sheridan.

Most consumers want predictive tests to learn if a disease is in their future

Most consumers want predictive tests to learn if a disease is in their future

Largest study of its kind demonstrates the ‘value of knowing’ may be underrecognized by conventional cost-effectiveness analyses

From a January 7, 2011 Eureka news alert

BOSTON, Mass.––Consumers may place a high value on information to predict their future health, and may be willing to pay out of pocket to get it. In a national survey conducted by researchers at Tufts Medical Center, roughly 76% of people indicated that they would take a hypothetical predictive test to find out if they will later develop Alzheimer’s disease, breast or prostate cancer, or arthritis. On average, respondents were willing to pay $300 to $600, depending on the specific disease and the accuracy of the test.

Published online in the journal Health Economics, the study examined individuals’ willingness to take and pay for hypothetical predictive laboratory tests in which there would be no direct treatment consequences. Overall, researchers found that in most situations, people were willing to pay for this ‘value of knowing’—even if the tests were not perfectly accurate.

Responses to the survey varied according to information provided about the disease risk profile and the accuracy of the hypothetical test. Of the 1463 respondents, willingness to be tested was greatest for prostate cancer (87% of respondents), followed by breast cancer (81%), arthritis (79%), and Alzheimer’s disease (72%). Average willingness to pay varied from roughly $300 for an arthritis test to $600 for a prostate cancer test.

“This study brings us a step closer to understanding people’s preferences and motivations for wanting a diagnostic test, even if it has no bearing on subsequent medical treatment,” says lead author Peter J. Neumann, ScD, director of the Center for the Evaluation of Value and Risk in Health at the Institute for Clinical Research and Health Policy Studies at Tufts Medical Center. “While we have to proceed cautiously in this area, given that tests have costs and risks as well as benefits, our study suggests that many people value information—both for its own sake and because they will adjust lifestyle and behavior choices accordingly.”

The randomized, population-based internet survey presented participants with the option to take a hypothetical predictive blood test for one of the four diseases, understanding that the test would not be covered by insurance. Participants were asked how much they would be willing to pay for a test that could predict their disease. Some respondents were asked about a ‘perfectly accurate’ test, and others about an ‘imperfect’ one. They were also queried about their socioeconomic information, health status, risk attitudes and behaviors, and likely actions after receiving a positive test result.

The advancing field of in vitro diagnostics (IVDs) includes an increasing number of clinical laboratory tests that offer the hope of personalized screening to assess an individual’s risk of developing certain diseases based on genetic markers found in blood or tissue samples.

According to Neumann, the growing use of predictive testing worldwide has resulted in increasing demands for evidence that demonstrates the value of such tests. Health technology assessment groups typically measure the utility of diagnostic tests in terms such as increased accuracy of test results, cost-effectiveness, or improved health outcomes for patients. But assessing the value of predictive testing may also require the use of new or different measures. In the Tufts Medical Center study, the researchers also found:

• Income and disease type impact willingness to pay. The amount of money patients were willing to pay out of pocket for tests increased with income levels, and was significantly higher for breast and prostate cancer and Alzheimer’s disease than for arthritis.
• Gender, age, and education influence test participation. About 24% of individuals sampled elected not to take the predictive test. Generally, older respondents, women, those with a bachelor’s or higher degree, and those with healthier behaviors were less inclined to undergo testing, even if it were free. Among those not wanting the test, major concerns expressed included the cost of the test, living with the knowledge of one’s disease risk, and the lack of preventive measures.
• Test results may alter future behavior. When faced with positive test results, individuals indicated they would change certain aspects of their lives, such as spending more time with loved ones (51%), putting their finances in order (48%), or traveling more (31%).

“By taking into account all implications of these tests— including the risks, costs, potential cost offsets, and the value they have outside of medical outcomes—we can build better policies and make better decisions about coverage and reimbursement, so that we may more accurately reflect patient preferences and appropriate uses of societal resources,” says Neumann.

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The study, “Willingness to Pay for Predictive Diagnostic Information with No Immediate Treatment: A Survey of U.S. Residents,” (Health Economics, published online before print, 28 December 2010: doi: 10.1002/hec.1704) was supported by a grant from the Institute for Health Technology Studies (InHealth). Coauthors of the study are Joshua T. Cohen, James K. Hammitt, Thomas W. Concannon, Hannah R. Auerbach, ChiHui Fang, and David M. Kent.

Call for clinical trial raw data to be freely available to all (& a related call from the scientific community)

A recent BMJ editorial (Goodbye PubMed, hello raw data) ****calls for clinical raw data to be freely available to everyone.
The author cites the example of  the influenza drug oseltamivir manufactured by Roche.

Reviewers for Cochrane Reviews asked Roche to release clinical trial data so they could systematically and comprehensively review antivirals as flu treatments. Roche refused, leaving the reviewers with inadequate incomplete information to complete their analysis.

The editor ends his article with these paragraphs…

From now on, they say, reviewers must have access to all unpublished data, not only from unpublished trials—the usual focus of concern about publication bias—but also from those that have been published in peer reviewed journals. Reviewers must assess entire trial programmes, and so new tools and methods are needed. If the trial reports are incomplete, reviewers should turn to reports from the drug regulators. As Tom Jefferson, the lead author for the Cochrane review, told me, “it’s goodbye PubMed, goodbye Embase.”

The reviewers have posted their new style protocol for this review on the Cochrane site and, recognising the enormity of the task, they are recording how much work is involved. But it must be clear to everyone that such a heroic approach is unsustainable across the whole of healthcare, given the resource constraints on academics and regulators. Which brings us back to what seems to be the only real solution—that the raw data from trials must be made freely available. Journals clearly have a role to play in making this happen, as An-Wen Chan agrees in his editorial (doi:10.1136/bmj.d80). The International Committee of Medical Journal Editors meets in a few months’ time. This will be on the agenda.

Scientists also see the need for access to research data.
The entire 2011 January/February issue of D-Lib Magazine is devoted to this topic.
**Cochrane Reviews are part of the Cochrane Collaboration, which
strives to provide the best evidence for health care. Cochrane reviews involve specific interventions in a specific clinical context, as antivirals for flu prevention in healthy adults. Individual reviews involve extensive literature research performed by independent teams of professionals.

Most reviews are only available through a paid subscription to the Cochrane Collaboration. However, many medical and academic libraries subscribe to the Cochrane Collaboration. Contact an academic reference librarian to see if they subscribe and if they provide access to the public.

****Via a MedLib posting by medical librarian Susan Fowler