Measuring the Effects of a Nationwide Community-based Participatory Design on Outcomes Related to Electronic Health Information Exchange
Rizk, S. C., & Bailey, R. F. (2010, May). Measuring the Effects of a Nationwide Community-based Participatory Design on Outcomes Related to Electronic Health Information Exchange. Presented at AAPOR 2010, .
The purpose of this research is to determine the impact of a community-based participatory design on developing solutions to various challenges posed by privacy and security issues related to electronic health information exchange (HIE). Between 2005 and 2009, the U.S. Department of Health and Human Services (HHS) funded the Privacy and Security Solutions for Interoperable Health Information Exchange project. The purpose was to better understand variation in business practices, policies, and laws related to privacy and security and develop effective solutions to interoperable HIE. Developing solutions to complex privacy and security related issues is frequently cited as a serious challenge to HIE, and differing opinions about how to implement solutions threaten to impede progress. Rather than collecting traditional data from respondents, the project employed a large-scale, nationwide community-based participatory design that sought to engage stakeholders in implementing consensus-based solutions.
To establish the scope and extent of the challenges, we will draw on baseline business practice data that was submitted by each state using common data collection tools. We will then review the number of participants engaged in the effort as reported by each state (n=34) to determine the extent of community participation. Finally, we will review the number and scope of various outcomes (guidelines, templates, executive orders, legislation) to draw conclusions about the effect of this unique methodology on successfully accomplishing the goals established at the outset of the project.
By July 2009, this project was directly responsible for the development of over 150 documents and tools which are now freely available to entities seeking to develop their own solutions to privacy and security related challenges. This supports the hypothesis that the design led to significant outcomes, and achieved added benefits, such as establishing a dialogue between entities that will support successful implementation of many of the HITECH initiatives.