Creating a Foundation for the Design of Culturally-Informed Health Information Technology (Wisconsin)

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Summary:

The specific aim of this AHRQ’s Health Services Research Dissertation (R36)-funded project was to create a foundation for a design strategy that leads to culturally-informed consumer health IT. The long-term objective of this project is to reduce racial and ethnic health care disparities by designing culturally-responsive approaches to the design of health information technologies (IT) that patients and members of their social network (e.g., family members, friends, neighbors) can more easily use.

This dissertation took a mixed-methods approach grounded in both cultural anthropological and systems engineering principles to assess patients’ daily routines of health information communication. Eighteen patients who self-identified their racial, ethnic, and national culture participated in the main study. In an effort to understand daily routines of health information communication, patients were asked during two rounds of interviews to create a visual depiction of their social network and were asked if, why, and how s/he would communicate four types of health information with each member of their social network. The four types of health information were: 1) daily observations of health status; 2) test results from clinical visits; 3) information on diabetes self-care and self-management; and 4) time and place of doctor’s appointments. In addition, study patients used journals to keep track of their communication with members of their social network over 5 days: 2 days before a clinical appointment, the day of the appointment, and 2 days after.

The types of people, information, modes, and rationales illustrated the complexity and diversity of participants’ daily routines of health information communication. The study also highlighted challenges of traditional targeted approaches to incorporating cultural considerations in design processes and provided support for a tailored approach. This work informed the creation of three conceptual frameworks related to the design of culturally-informed consumer health IT. The first framework conceptualizes the tensions between using engineering and cultural anthropological approaches to consumer health IT design. The second conceptualizes how cultural factors may be integrated into the design of consumer health IT. The third framework illustrates how cultural factors form part of a larger cohort of factors—such as functional, technical, and affective factors—in the design of consumer health IT.

Creating a Foundation for the Design of Culturally-Informed Health Information Technology - 2012

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    PAR: HS06-118: AHRQ Grants for Health Services Research Dissertation (R36)
  • Grant Number: 
    R36 HS 018809
  • Project Period: 
    February 2010 – July 2012
  • AHRQ Funding Amount: 
    $34,003
  • PDF Version: 
    (PDF, 227.53 KB)

Summary: The aim of this AHRQ Health Services Research Dissertation-funded project was to create a foundation for a design strategy that leads to culturally-informed consumer health information technology (IT). The long-term objective of Dr. Valdez’s work is to reduce racial and ethnic health care disparities by designing culturally-responsive approaches to the design of health IT that patients and members of their social network (e.g., family members, friends, neighbors) can easily use.

This dissertation took a mixed-methods approach grounded in cultural anthropological and systems engineering principles to assess patients’ daily routines of health information communication. Eighteen patients who self-identified their racial, ethnic, and national culture participated in the main study. These participants were asked about their cultural identities and if and how these identities affect their health information communication practices. During two rounds of interviews, patients created a visual depiction of their social network and were asked if, why, and how they would communicate the following four types of health information with each member of their social network: 1) daily observations of health status; 2) test results from clinical visits; 3) information on diabetes self-care and self-management; and 4) time and place of doctor appointments. In addition, a subset of study patients used journals to keep track of their communication with members of their social network over 5 days: 2 days before a clinical appointment, the day of the appointment, and 2 days after.

Specific Aims:

  • Determine the daily routines of health information communication exhibited by patients holding diverse cultural identities. (Achieved)
  • Determine what design considerations for consumer health IT result from knowledge of these daily routines. (Achieved)

2012 Activities: Dr. Valdez completed the qualitative data analysis for the project, which ended in July 2012. In December 2012, she received a Ph.D. in Industrial and Systems Engineering from the University of Wisconsin-Madison.

Impact and Findings: The types of people, information, modes, and rationales illustrated the complexity and diversity of participants’ daily routines of health information communication. The study also highlighted the challenges of traditional targeted approaches to incorporating cultural considerations in design processes and provided support for a tailored approach. This work informed the creation of three conceptual frameworks related to the design of culturally informed consumer health IT. The first conceptualizes the tensions between using engineering and cultural anthropological approaches; the second conceptualizes how cultural factors may be integrated; and the third illustrates how cultural factors are part of a larger cohort of factors—such as functional, technical, and affective factors.

Target Population: General

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to improve health care decisionmaking through the use of integrated data and knowledge management.

Business Goal: Knowledge Creation

Creating a foundation for the design of culturally-informed health IT - 2011

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    PAR: HS06-118: AHRQ Grants for Health Services Research Dissertation (R36)
  • Grant Number: 
    R36 HS 018809
  • Project Period: 
    February 2010 - July 2012
  • AHRQ Funding Amount: 
    $34,003
  • PDF Version: 
    (PDF, 162.69 KB)

Summary: When properly presented, consumer health information technology (IT) has the potential to increase the involvement of patients and their supporters in the improvement of their health. An approach to confronting racial and ethnic health care disparities has been to develop initiatives to enhance the cultural appropriateness of health care. To date, such efforts have focused predominantly on culturally tailoring provider-delivered care, health care systems, and health promotion campaigns. Given the expanding importance of health IT used by patients and their social network, and the fact that most technology is embedded with strong but unrecognized cultural orientations, expanding health IT design to purposefully include salient cultural dimensions may help reduce these disparities.

The long-term objective of this Health Services Research Dissertation (R36) grant is to reduce racial and ethnic health care disparities by creating new, culturally-responsive approaches to the design of health IT for use by patients and members of their social network (e.g., family, friends, neighbors). The goal is to create a foundation for a design strategy that leads to culturally-informed consumer health IT. A concurrent, mixed-methods approach drawing on both anthropological and systems engineering methods is being used to assess culturally diverse patients' daily routines of health information communication.

The outcome of this analysis will be a set of design considerations for culturally informed health IT. These design considerations will specify where similarities and differences in needed functionalities and means exist across individuals of diverse cultural identities.

Specific Aims:

  • Determine the daily routines of health information communication exhibited by patients holding diverse cultural identities. (Ongoing)
  • Determine what design considerations for consumer health IT result from knowledge of these daily routines. (Ongoing)

2011 Activities: Originally, Ms. Valdez proposed conducting one interview with each of the 30 participants to determine the health information communication routines of culturally diverse patients. Ultimately, however, two interviews with each participant were conducted in order to probe deeper into their social networks and their choices on health information communication. In the first interview, participants were asked to create a visual depiction of their social network. Participants were then presented with different types of health information - daily observations of health status, test results from clinical visits, information on diabetes self-care and self-management, and time and place of doctor's appointments - and asked if and how they communicated this information to each member in their social network. At the second interview, conducted 1-to-2 weeks later, participants were asked to validate the information from the first interview, identify how certain aspects of their culture affects what kind of health information they share or do not share, and to describe their use of technology in general.

Data collection, a focus in 2011, was completed by the end of the year. A total of 34 individuals were screened, 18 of whom participated in two interviews. Qualitative data analysis is ongoing and will be completed in 2012.

Preliminary Impact and Findings: This project has no findings to date.

Target Population: General

 Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to improve health care decisionmaking through the use of integrated data and knowledge management.

Business Goal: Knowledge Creation

Creating a foundation for the design of culturally-informed health IT - 2010

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    PAR: HS06-118: AHRQ Grants for Health Services Research Dissertation (R36)
  • Grant Number: 
    R36 HS 018809
  • Project Period: 
    February 2010 – January 2012
  • AHRQ Funding Amount: 
    $34,003
  • PDF Version: 
    (PDF, 663.36 KB)


Target Population: General

Summary: One approach to confronting racial and ethnic health care disparities has been to develop initiatives to enhance the cultural appropriateness of health care. To date, these efforts have predominantly focused on the cultural tailoring of provider-delivered care, health care systems, and health promotion campaigns. Given the expanding importance of health information technology (IT) used by patients and members of their social network, and the fact that most technology is embedded with strong but unrecognized cultural orientations, expanding health IT design to purposefully include salient cultural dimensions may help reduce these disparities.

The long-term objective of this work is to reduce racial and ethnic health care disparities by creating new, culturally-responsive approaches to the design of health IT for use by patients and members of their social network (e.g., family, friends, neighbors). The goal is to create a foundation for a design strategy that leads to culturally-informed consumer health IT. Consumer health IT has the potential to involve patients and their supporters in the improvement of their health. A concurrent, mixed-methods approach drawing on both anthropological and systems engineering methods will be used to systematically assess culturally diverse patients’ daily routines of health information communication.

The outcome of this study will be a systematically-derived understanding of the daily health information communication routines of individuals of diverse cultural backgrounds. Such an understanding will identify points of similarity and variability and, therefore, where functional standardization may be appropriate and where and what type of tailoring may be necessary. These empirically grounded design considerations may be used to culturally inform the needs assessment, evaluation, and selection phases of the design process.

Two lines of future work will build upon the results of this project. The first will empirically assess the ease of applying these considerations at different stages of the design process. The second will empirically assess the impact of culturally-informed consumer health IT on outcome measures such as usability, use, and satisfaction.

Specific Aims:
  • Determine the daily routines of health information communication exhibited by patients holding diverse cultural identities. (Ongoing)
  • Determine what design considerations for consumer health IT result from knowledge of these daily routines. (Ongoing)

2010 Activities: The project team is conducting surveys, interviews, and validation exercises to determine the health information communication routines of culturally-diverse patients. As of December 2010, 20 of the proposed 60 screening surveys; two interviews apiece with 12 of the proposed 30 participants; and four of the proposed six validation exercises were completed. The project team reflected upon and documented the results of these interactions to gain insight into design considerations for consumer health IT. Analysis of these data will begin in 2011.

In addition, the project team has disseminated preliminary findings at conferences, including a paper titled Designing Culturally-informed Consumer Health IT: An Exploration and Proposed Integration of Contrasting Methodological Perspectives, presented at the 2010 Human Factors and Ergonomics Society Conference, and an oral presentation titled To Talk or Not to Talk: Exploring Culturally Diverse Patients’ Health Information Communication Choices at the 2010 American Medical Informatics Association Annual Symposium.

Preliminary Impact and Findings: Preliminary analysis of the data reveals that although some participants shared identification with a single term (e.g., “white”), the ways in which they identified with these terms were often quite different. For example, one individual indicated that she identified as “white,” but only because “they expect me to.” She indicated that she isn’t white by pointing at her skin, but felt that was the box she was expected to check. Diverse identifications highlight the complexity of creating user profiles or segmenting user groups by cultural indicators. In addition, the project team found a clear difference between what participants believe about health information communication and the actual phenomenon. When participants were asked if they believe that their health information communication practices are similar or different to others’, they overwhelmingly stated that they thought that others communicated health information as they did. However, from the data gathered, it is clear that participants often had very different approaches to health information communication. This finding suggests that a “user-centered” design approach may suffer from the same limitations as a “designer-centered” approach if the users integrated into the design process are not representative of the entire population.

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to improve health care decisionmaking through the use of integrated data and knowledge management.

Business Goal: Knowledge Creation

Creating a Foundation for the Design of Culturally Informed Health IT - Final Report

Citation:
Valdez R. Creating a Foundation for the Design of Culturally Informed Health IT - Final Report. (Prepared by the University of Wisconsin-Madison under Grant No. R36 HS018809). Rockville, MD: Agency for Healthcare Research and Quality, 2012. (PDF, 574.33 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services.
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