Monitoring HIV Care in the United States Indicators and Data Systems (2012) / Chapter Skim
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4 Barriers to the Collection of HIV Care Data
4 Barriers to the Collection of HIV Care Data
Pages 237-272
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From page 237... ...
The chapter ends with the committee's conclusions and recommendation pertaining to this portion of its charge. POTENTIAL REIMBURSEMENT-RELATED BARRIERS TO THE COLLECTION OF HIV CARE DATA Reimbursement-related barriers to the collection of data on care and supportive services received by people living with HIV/AIDS (PLWHA)
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111148) , claims data are likely to become an even more useful source of data for monitoring HIV care.
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. The Health Information Technology for Economic and Clinical Health (HITECH)
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POTENTIAL REPORTING-RELATED BARRIERS TO THE COLLECTION OF HIV CARE DATA The ability to monitor trends in HIV care depends on accurate and timely reporting of data by HIV care providers, laboratories, health departments, and other entities. For example, estimation of several of the committee's recommended indicators for clinical HIV care require accurate estimates of the number of people living with diagnosed HIV infection in the United States, as well as CD4 and viral load testing information, reported for state and local as well as national HIV/AIDS surveillance purposes.
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From page 241... ...
system to report notifiable conditions to health departments serving Indianapolis, Indiana, identified 4.4 times as many cases of such conditions as traditional, spontaneous, paper-based methods, likely by helping to overcome some of the barriers noted above. The ELR system also identified cases about 8 days earlier than spontaneous reporting (Overhage et al., 2008)
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242 TABLE 4-1 HIV Testing and Reporting Policies State or HIV Name Reporting State or HIV Name Reporting Territory C/A Reporting Implementation Territory C/A Reporting Implementation Alabama C Name 1988 Jan New Hampshire C, A Name 2005 Jan Alaska C, A Name 1999 Feb New Jersey C, A Name 1992 Jan Arizona C, A Name 1987 Jan New Mexico C, A Name 1998 Jan Arkansas C, A Name 1989 Jul New York C, A Name 2000 Jun California C, A, Name 2006 Apr North Carolina C Name 1990 Feb Colorado C, A Name 1985 Nov North Dakota C Name 1988 Jan Connecticut C, A Name 2005 Jan Ohio C, A Name 1990 Jun Delaware C, A, Name 2006 Feb Oklahoma C, A Name 1988 Jun District of C, A Name 2006 Nov Oregon C, A Name 2006 Apr Columbia Florida C, A Name 1997 Jul Pennsylvania C, A Name 2002 Oct Georgia C, A Name 2003 Dec Rhode Island C, A Name 2006 Jul Hawaii C, A Name 2008 Mar South Carolina C Name 1986 Feb Idaho C Name 1986 Jun South Dakota C Name 1988 Jan Illinois C, A Name 2006 Jan Tennessee C Name 1992 Jan Indiana C, A Name 1988 Jul Texas C, A Name 1999 Jan
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Iowa C Name 1998 Jul Utah C, A Name 1989 Apr Kansas C, A Name 1999 Jul Vermont C, A Name 2008 Apr Kentucky C, A Name 2004 Oct Virginia C, A Name 1989 Jul Louisiana C, A Name 1993 Feb Washington C, A Name 2006 Mar Maine C, A Name 2006 Jan West Virginia C, A Name 1989 Jan Maryland C, A Name 2007 Apr Wisconsin C, A Name 1985 Nov Massachusetts C, A Name 2007 Jan Wyoming C, A Name 1989 Jun Michigan C, A Name 1992 Apr American Samoa C, A Name 2001 Aug Minnesota C, A Name 1985 Oct Guam C, A Name 2000 Mar Mississippi C Name 1988 Aug North Mariana Islands C, A Name 2001 Oct Missouri C, A Name 1987 Oct Palau C Name 2005 Oct Montana C, A Name 2006 Sept Puerto Rico C, A Name 2003 Jan Nebraska C, A Name 1995 Sept U.S. Virgin Islands C Name 1998 Dec Nevada C Name 1992 Feb NOTE: A = anonymous; C = confidential.
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From page 244... ...
Non-reporting of HIV/AIDS cases identified at anonymous testing sites may be another barrier to the completeness of surveillance data. Health departments introduced anonymous HIV testing early in the HIV epidemic because of the unique stigma attached to HIV and concern that fear of potential breaches in confidentiality might deter individuals from testing (Markovitz et al., 2011)
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Sharing of identifiable health information across health departments is often necessary to link data for individuals who receive HIV care and supportive services across multiple jurisdictions. However, local laws designed to protect identifiable information may inhibit data sharing among state public health authorities, compromising the accuracy of the analysis of and conclusions drawn from the data (Hodge et al., 2011; Personal communication, Carmine Grasso, New Jersey Department of Health and Senior Services, August 9, 2011)
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However, health departments are currently overburdened with myriad grant-related administrative activities. The scope of reporting requirements for state health departments in 2010 included 96 reports for core and supplemental (e.g., STD and viral hepatitis)
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, may themselves be the direct grantees of federally funded HIV/AIDS core or supplemental programs and report program data to funding agencies, or they may provide data to health departments that are then incorporated into reports for federal agencies. Providers of HIV clinical care and supportive services have many competing responsibilities and restrictions (e.g., budget or expertise related)
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These include federal and state policies that result in a fragmented health care system, as well as federal and state policies pertaining to the disclosure of health information. Federal and State Policies That Result in a Fragmented Health Care System There are multiple sources of care and care coverage for PLWHA in the United States.
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. This section discusses federal and state privacy laws designed to protect patient health information and how these laws may influence the collection of HIV care data for purposes of estimating the core indicators recommended by the committee.
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250 TABLE 4-2 Potential Eligibility Criteria for Care Coverage for PLWHA, by Major Payer/Source Medicaid Medicare Private (employer) Private (individual)
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, and age. The Privacy Rule applies to health plans, health care providers, and health care clearinghouses that electronically transmit health information in connection with certain health care transactions11 (HHS, 2003)
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Under this exception, covered entities may disclose PHI for public health activities -- for example, to public health authorities as required by law to prevent and BOX 4-1 HIPAA Privacy Rule–Covered Entities Health Care Provider Health Plans • • Doctors Health insurance companies • • Clinics Health maintenance organizations (HMOs) • • Psychologists Company health plans • • Dentists Government programs that pay for health • Chiropractors care, such as Medicare, Medicaid, and the • Nursing Homes military and veterans health care programs, • Pharmacies and the Indian Health Service Health Care Clearinghouses This includes entities that process nonstandard health information they receive from another entity into a standard (i.e., standard electronic format or data con tent)
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. Examples of public health authorities include the CDC and state and local health departments, which is why providers are permitted to report new HIV and AIDS cases with patient identifying information to area public health authorities.12 PHI also may be disclosed to health oversight agencies for activities such as audits and investigations necessary for administration of the health care system and government benefit programs (HHS, 2003)
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Lack of an umbrella policy or regulation defining infractions and enforcement and challenges in control 14 The Privacy Rule designates two ways in which a covered entity can determine that health information is de-identified. Under the "Safe Harbor" approach, a covered entity may consider data to be de-identified if that entity removes identifiers and has no reason to believe that the remaining information could be used to identify a person.
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. The implementation of the Privacy Rule has changed the way in which covered entities manage health information.
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Most substance abuse treatment programs are subject to both Part 2 and the Privacy Rule and must comply with both. According to guidance for alcohol and substance abuse programs developed by SAMHSA, this generally means that 16 "Records" refer to "any information, whether recorded or not, relating to a patient re ceived or acquired by a federally assisted alcohol or drug program" (SAMHSA, 2004)
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Therefore, programs can report cases of HIV/AIDS and other communicable diseases without patient consent to local public health authorities, such as through a QSOA with the local public health department or by some other mechanism. Reported cases of HIV/AIDS would probably not be linked to substance abuse treatment information; however, most states require reporters to identify themselves (which may disclose that the information is coming from a drug and alcohol abuse treatment program)
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State Health Privacy Laws In addition to federal laws, state statutes and regulations govern the disclosure of health information. In general, a state health privacy law that is more stringent about the privacy of individually identifiable health information takes precedence over federal law (Pritts et al., 2009b)
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Because it was peripheral to the study charge, the committee did not conduct an independent review of current laws for all U.S. states and territories pertaining to the privacy of health information needed to estimate the core indicators of HIV care, behavioral health, and supportive services recommended in this report (although, such a review might be helpful to gain a better sense of the full extent to which state laws are barriers to the collection of necessary data)
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. As of 2008, when the review of state health information laws was conducted, laws in 41 U.S.
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State laws generally impose confidentiality requirements on both substance abuse treatment records as well as the patient's identity. The laws also focus primarily on patient information and records generated by substance abuse treatment programs and facilities, rather than those generated in the context of clinical care.
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In several states, recipients are prohibited from further disclosure of the information except as authorized under the terms of the law. A few states' mental health laws treat mental health information the same as other types of health information and generally permit disclosure without patient permission for treatment purposes.
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As of 2008, laws in a handful of states with HIV/AIDS confidentiality laws that are broad enough to possibly include independent clinical laboratories expressly indicate that HIV test results must or may be provided to the person who ordered the test. In about half of the states, HIV/AIDS confidentiality laws appear to permit the disclosure of HIV test results to health care providers and health care facilities for treatment reasons without the patient's permission.
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Privacy officers in health agencies identified the need to develop state public health privacy frameworks to simplify understanding and documentation of privacy regulations pertaining to the reporting of health information. The growing demand for identifiable information for research purposes that is occurring as a result of increased availability of data in electronic form creates greater opportunity for linking data across systems and tracking individual-level data longitudinally.
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The reporting require ments for core and supplemental HIV/AIDS programs administered by health departments are often project specific, even across related programming (e.g., HIV prevention and HIV/AIDS care) , requiring staff to modify their reporting practices for each grant.
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Involvement of stakeholders may foster greater investment in data collection and reduce reporting burden since the data collected will be more closely aligned with stakeholders' own data needs. Other Policy Barriers to the Collection of HIV Care Data • The various sources of care and care coverage in the United States each have their own eligibility requirements.
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2005. Potential impact of the HIPAA Privacy Rule on data collection in a registry of patients with acute coronary syndrome.
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2009. Reforming the HIPAA Privacy Rule: Safeguarding privacy and promoting research.
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2007. Assessing the effects of the HIPAA Privacy Rule on release of patient information by healthcare facilities.
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2008. Health Information Privacy in State Public Health Agencies.
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2010. Frequently Asked Questions: Applying the Substance Abuse Confidentiality Regulations to Health Information Exchange.
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