Adherence to HIV /AIDS therapies among low -literacy populations: The ALP project

Adherence to HIV/AIDS therapies has been an important health problem since the early 1980s when AZT was first prescribed as a therapy for HIV/AIDS. It became particularly important between 1995 and 1997 with the advent of protease inhibitors (Chesney, Ickovics, Hecht, Sikipa, & Rabkin J., 1999) and became even more significant as persons with HIV/AIDS began to develop resistance to medications. Low-literacy populations have poorer health (Brez & Taylor, 1997) and higher AIDS rates (Simon, Hu, Diaz, & Kerndt, 1995), than their higher literacy counterparts due to delayed treatment (Baker, Parker, Williams, Clark, & Nurss, 1997), shame of literacy skills (Parikh, 1996), and poor access to care (Williams, et al., 1995). Poorer health and higher AIDS rates can also be attributed to poor patient-provider relationships (Crespo-Fierro, 1997; Eldred, Wu, Chaisson, & Moore, 1998) to a poorer understanding of medical protocols (Murphy, 1997), and inadequate patient education (Ungvarski, 1997; Davis, Michielutte, Askov, Williams, & Weiss, 1998, Doak, Doak, & Root, 1996). ^ The ALP intervention was developed for HIV positive low-literacy populations of African American women in Houston, Texas. The intervention was based on a needs assessment, using the PRECEDE model, an innovative process referred to as Intervention Mapping, and validated using formative evaluation methods with 54 individuals. The needs assessment resulted in a list of behavioral, environmental, predisposing, enabling, and reinforcing determinants of adherence. The Intervention Mapping framework was used to refine these determinants and develop a list of objectives describing what must be learned or changed to for the target population to adhere to HIV/AIDS therapies. Methods and strategies, were developed using theoretical constructs from the Health Belief Model (Rosenstock, 1974) and Social Cognitive Theory (Bandura, 1986). These theories, empirical evidence, and information from the target population indicated that perceived susceptibility, perceived severity, outcome expectations, and self-efficacy were important and changeable determinants of adherence to HIV/AIDS therapies for this population. ^ These components were brought together in the form of a theory-based color cartoon book and 10-minute cassette tape. The book was developed for people with 2.9 years of U.S. education as measured with the Flesch-Kincaid Grade Level method and the script was recorded onto a cassette tape to make it suitable for populations with even lower-literacy skills. A formative evaluation was conducted to ensure that the content and structure were accurate, clear, realistic, readable, appropriate, and likely to be used as intended. ^

DEVELOPING A METHOD FOR IDENTIFYING AND REDUCING FUNCTIONAL DISCREPANCIES OF INFORMATION SYSTEMS

Currently more than half of Electronic Health Record (EHR) projects fail. Most of these failures are not due to flawed technology, but rather due to the lack of systematic considerations of human issues. Among the barriers for EHR adoption, function mismatching among users, activities, and systems is a major area that has not been systematically addressed from a human-centered perspective. A theoretical framework called Functional Framework was developed for identifying and reducing functional discrepancies among users, activities, and systems. The Functional Framework is composed of three models – the User Model, the Designer Model, and the Activity Model. The User Model was developed by conducting a survey (N = 32) that identified the functions needed and desired from the user’s perspective. The Designer Model was developed by conducting a systemic review of an Electronic Dental Record (EDR) and its functions. The Activity Model was developed using an ethnographic method called shadowing where EDR users (5 dentists, 5 dental assistants, 5 administrative personnel) were followed quietly and observed for their activities. These three models were combined to form a unified model. From the unified model the work domain ontology was developed by asking users to rate the functions (a total of 190 functions) in the unified model along the dimensions of frequency and criticality in a survey. The functional discrepancies, as indicated by the regions of the Venn diagrams formed by the three models, were consistent with the survey results, especially with user satisfaction. The survey for the Functional Framework indicated the preference of one system over the other (R=0.895). The results of this project showed that the Functional Framework provides a systematic method for identifying, evaluating, and reducing functional discrepancies among users, systems, and activities. Limitations and generalizability of the Functional Framework were discussed.

THE INTERACTION BETWEEN INTERNAL AND EXTERNAL INFORMATION ON RELATIONAL DATA SEARCH

People often use tools to search for information. In order to improve the quality of an information search, it is important to understand how internal information, which is stored in user’s mind, and external information, represented by the interface of tools interact with each other. How information is distributed between internal and external representations significantly affects information search performance. However, few studies have examined the relationship between types of interface and types of search task in the context of information search. For a distributed information search task, how data are distributed, represented, and formatted significantly affects the user search performance in terms of response time and accuracy. Guided by UFuRT (User, Function, Representation, Task), a human-centered process, I propose a search model, task taxonomy. The model defines its relationship with other existing information models. The taxonomy clarifies the legitimate operations for each type of search task of relation data. Based on the model and taxonomy, I have also developed prototypes of interface for the search tasks of relational data. These prototypes were used for experiments. The experiments described in this study are of a within-subject design with a sample of 24 participants recruited from the graduate schools located in the Texas Medical Center. Participants performed one-dimensional nominal search tasks over nominal, ordinal, and ratio displays, and searched one-dimensional nominal, ordinal, interval, and ratio tasks over table and graph displays. Participants also performed the same task and display combination for twodimensional searches. Distributed cognition theory has been adopted as a theoretical framework for analyzing and predicting the search performance of relational data. It has been shown that the representation dimensions and data scales, as well as the search task types, are main factors in determining search efficiency and effectiveness. In particular, the more external representations used, the better search task performance, and the results suggest the ideal search performance occurs when the question type and corresponding data scale representation match. The implications of the study lie in contributing to the effective design of search interface for relational data, especially laboratory results, which are often used in healthcare activities.

A process evaluation of a health literacy intervention targeting pediatric providers' communication skills at the Texas Children's Health Plan

Background. Health literacy is an important determinant for quality health care, and affects communication between patients and physicians. Poor communication may result in negative effects in health. Improved communication between patients and physicians could positively affect health outcomes. Communication skills are teachable.^ Objectives. (1) to evaluate the process involved in the design and implementation of a health literacy intervention targeting pediatric providers’ communication skills at the Texas Children’s Health Plan in Houston, Texas; and (2) to describe lessons learned from this process that may be used in future attempts to address the issue of health literacy and health communication. ^ Design/methods. The process evaluation of the implementation of a health literacy strategy at the Texas Children’s Health Plan (TCHP) consisted of a critical analysis of all documents and minutes from meetings of the team of investigators. It also involved a secondary analysis of data collected between December 2006 and June 2007. Descriptive statistics, paired t-test and Wilcoxon-signed-rank test were employed in analyzing the data. This information was complemented with a limited review of existing literature on communication skills training programs. ^ Results. The design of the educational intervention followed recommendations from experts in the field of health literacy. The delivery of the intervention was possible and benefited from existing resources and logistics within the TCHP. Very few targeted providers participated in two offerings of the workshop (6.6% and 1.7% respectively). After the educational intervention, providers showed increased knowledge of health literacy facts and its effects in health (p=0.001); increased awareness of the low health literacy problem (p=0.003); increased expectations for change in practice (p=0.002), and intent to use health literacy strategies for communication immediately following the intervention (p=0.001). Low participation indicated the need for further investigation of barriers to, and means for successful implementation of programs aimed to improving health communication. ^ Conclusions. A short, focused intervention utilizing health literacy strategies for communication appeared effective in increasing knowledge and intentions for change in a small group of pediatric providers. ^

Continuous safety screens for randomized controlled clinical trials with blinded treatment information

Standard methods for testing safety data are needed to ensure the safe conduct of clinical trials. In particular, objective rules for reliably identifying unsafe treatments need to be put into place to help protect patients from unnecessary harm. DMCs are uniquely qualified to evaluate accumulating unblinded data and make recommendations about the continuing safe conduct of a trial. However, it is the trial leadership who must make the tough ethical decision about stopping a trial, and they could benefit from objective statistical rules that help them judge the strength of evidence contained in the blinded data. We design early stopping rules for harm that act as continuous safety screens for randomized controlled clinical trials with blinded treatment information, which could be used by anyone, including trial investigators (and trial leadership). A Bayesian framework, with emphasis on the likelihood function, is used to allow for continuous monitoring without adjusting for multiple comparisons. Close collaboration between the statistician and the clinical investigators will be needed in order to design safety screens with good operating characteristics. Though the math underlying this procedure may be computationally intensive, implementation of the statistical rules will be easy and the continuous screening provided will give suitably early warning when real problems were to emerge. Trial investigators and trial leadership need these safety screens to help them to effectively monitor the ongoing safe conduct of clinical trials with blinded data.^

Assessment of markers of medication literacy in a US-Mexico border community

Each year an estimated 180,000 people in the United States (U.S.) die as a result of medication errors, now considered a major public health problem. If a patient cannot correctly act on information related to medication use or "Medication Literacy" there is an increased potential for error. Medication use issues are unique on the US-Mexico border because they include high rates of herbal products and medication products from Mexico as well as issues related to the preferred language (English or Spanish) of the patient. To evaluate the medication literacy in a US-Mexico border community, this retrospective study evaluates 180 subjects representing four diverse economic segments of a metropolitan US-Mexico Border community who have taken a Medication Literacy Assessment. The assessment tool has been created to understand how patients interpret medication information for prescription, over-the-counter, herbal, and Mexican medication product use, and how they problem-solve medication questions. The Medication Literacy Assessment tool specifically assesses document literacy (e.g., prescription labels), prose literacy (e.g., patient leaflets), numeracy (e.g., calculations and measurements) as well as qualitative data related to medication use practices. The main hypothesis of this study is that the ability to interpret and use medications will vary based on education, language (Spanish or English), and recruitment sites (economically diverse communities). The results will provide information to better characterize medication use in a primarily Hispanic population on the US-Mexico border and may be used to influence policy decisions regarding prescription and over-the-counter product information.^

Achieving effective biosurveillance with the Nationwide Health Information Network

The federal government is currently developing the Nationwide Health Information Network (NHIN). Described as a “network of networks,” the NHIN seeks to provide a nationwide, interoperable health information infrastructure that will securely connect consumers with those involved in health care. As part of the national health information technology (HIT) agenda, the NHIN aims to improve individual and population health by enabling health information to follow the consumer, be available for clinical decision-making, and support important public health measures such as biosurveillance. While the NHIN promises to improve clinical care to individuals and to reduce U.S. health care system costs overall, this electronic environment presents novel challenges for protecting individually identifiable health information. A major barrier to achieving public trust in the NHIN is the development of, and adherence to, a consistent and coordinated approach to privacy and security of health information. This paper will analyze the policy framework for electronic health information exchange with the NHIN. This exercise will demonstrate that the current policy is an effective framework for achieving effective biosurveillance with the NHIN. ^

Revisiting health literacy and its impact on patient-physician communication

Objective. To review professional literature on health literacy and its impact on patient-physician communication, to describe significant literature on this issue, and to summarize implications of the findings from this literature. Design. Update of a review of literature. Data sources: MEDLINE. Review Methods. Articles dealing with the impact of health literacy on patient-physician communication were selected. The articles addressed at least one of four criteria on the subject: prevalence of the problem; effect of health literacy on patient-physician communication; association of health literacy to health outcomes; and interventions to enhance communication with patients exhibiting limited health literacy. Results. Approximately 623 articles were selected for review; 87 were fully reviewed and found to be relevant to the issue; and 25 articles were cited. Conclusion. Limited health literacy is extremely widespread throughout the U.S., particularly among specific populations. Providers must be aware that patients often process health care decision making differently from their own familiar procedures and that by taking the steps to make medical language and health information simpler and the time to confirm patient understanding, health outcomes of limited health literacy populations will improve. ^

The use of social media to communicate child health information to low-income parents: A formative study

The Internet, and specifically web 2.0 social media applications, offers an innovative method for communicating child health information to low-income parents. The main objective of this study was to use qualitative data to determine the value of using social media to reach low-income parents with child health information. A qualitative formative evaluation employing focus groups was used to determine the value of using social media for dissemination of child health information. Inclusion criteria included: (1) a parent with a child that attends a school in a designated Central Texas school district; and (2) English-speaking. The students who attend these schools are generally economically disadvantaged and are predominately Hispanic. The classic analysis strategy was used for data analysis. Focus group participants (n=19) were female (95%); White (53%), Hispanic (42%) or African American (5%); and received government assistance (63%). Most had access to the Internet (74%) and were likely to have low health literacy (53%). The most preferred source of child health information was the family pediatrician or general practitioner. Many participants were familiar with social media applications and had profiles on popular social networking sites, but used them infrequently. Objections to social media sites as sources of child health information included lack of credibility and parent time. Social media has excellent potential for reaching low-income parents when used as part of a multi-channel communication campaign. Further research should focus on the most effective type and format of messages that can promote behavior change in this population, such as story-telling. ^

Formalizing a Conceptual Framework of Work Domain Knowledge

Background: The failure rate of health information systems is high, partially due to fragmented, incomplete, or incorrect identification and description of specific and critical domain requirements. In order to systematically transform the requirements of work into real information system, an explicit conceptual framework is essential to summarize the work requirements and guide system design. Recently, Butler, Zhang, and colleagues proposed a conceptual framework called Work Domain Ontology (WDO) to formally represent users’ work. This WDO approach has been successfully demonstrated in a real world design project on aircraft scheduling. However, as a top level conceptual framework, this WDO has not defined an explicit and well specified schema (WDOS) , and it does not have a generalizable and operationalized procedure that can be easily applied to develop WDO. Moreover, WDO has not been developed for any concrete healthcare domain. These limitations hinder the utility of WDO in real world information system in general and in health information system in particular. Objective: The objective of this research is to formalize the WDOS, operationalize a procedure to develop WDO, and evaluate WDO approach using Self-Nutrition Management (SNM) work domain. Method: Concept analysis was implemented to formalize WDOS. Focus group interview was conducted to capture concepts in SNM work domain. Ontology engineering methods were adopted to model SNM WDO. Part of the concepts under the primary goal “staying healthy” for SNM were selected and transformed into a semi-structured survey to evaluate the acceptance, explicitness, completeness, consistency, experience dependency of SNM WDO. Result: Four concepts, “goal, operation, object and constraint”, were identified and formally modeled in WDOS with definitions and attributes. 72 SNM WDO concepts under primary goal were selected and transformed into semi-structured survey questions. The evaluation indicated that the major concepts of SNM WDO were accepted by 41 overweight subjects. SNM WDO is generally independent of user domain experience but partially dependent on SNM application experience. 23 of 41 paired concepts had significant correlations. Two concepts were identified as ambiguous concepts. 8 extra concepts were recommended towards the completeness of SNM WDO. Conclusion: The preliminary WDOS is ready with an operationalized procedure. SNM WDO has been developed to guide future SNM application design. This research is an essential step towards Work-Centered Design (WCD).

Translating knowledge into action: Information needs of decision-makers in healthcare

Purpose: The purpose of this study was to assess the healthcare information needs of decision-makers in a local US healthcare setting in efforts to promote the translation of knowledge into action. The focus was on the perceptions and preferences of decision-makers regarding usable information in making decisions as to identify strategies to maximize the contribution of healthcare findings to policy and practice. Methods: This study utilized a qualitative data collection and analysis strategy. Data was collected via open-ended key-informant interviews from a sample of 37 public and private-sector healthcare decision-makers in the Houston/Harris County safety net. The sample was comprised of high-level decision-makers, including legislators, executive managers, service providers, and healthcare funders. Decision-makers were asked to identify the types of information, the level of collaboration with outside agencies, useful attributes of information, and the sources, formats/styles, and modes of information preferred in making important decisions and the basis for their preferences. Results: Decision-makers report acquiring information, categorizing information as usable knowledge, and selecting information for use based on the application of four cross-cutting thought processes or cognitive frameworks. In order of apparent preference, these are time orientation, followed by information seeking directionality, selection of validation processes, and centrality of credibility/reliability. In applying the frameworks, decision-makers are influenced by numerous factors associated with their perceptions of the utility of information and the importance of collaboration with outside agencies in making decisions as well as professional and organizational characteristics. Conclusion: An approach based on the elucidated cognitive framework may be valuable in identifying the reported contextual determinants of information use by decision-makers in US healthcare settings. Such an approach can facilitate active producer/user collaborations and promote the production of mutually valued, comprehensible, and usable findings leading to sustainable knowledge translation efforts long-term.^