Health Information Security Privacy Collaboration (HISPC)

Consumer Education and Engagement Collaborative

The HISPC Education & Consumer Engagement Collaborative is the first federally funded effort to advance multi-state efforts in this much-needed area. Almost all that is known about consumers comes from consumer-advocacy groups who do not necessarily represent the typical patient. The states in this group are diverse in their resident populations and healthcare resource needs; we will be implementing state projects to move them along in their HIT/HIE evolution as well as a set of common projects thought to be necessary for all states regardless of their history and expertise. The projects are unique in that they all target specific resident patient populations and they all include literacy and language considerations for their developing products. In addition, the educational resource toolkits will be created as templates for general use by other states and organizations.

The adoption of HIT in Kansas continues to expand. However, there is still the need to hasten the process in order to reap the benefits of health information technology (HIT) and health information exchange (HIE) sooner. There continue to be obstacles that impede the progress such as mistrust by consumers about use of their health information, or the misunderstanding about the protections of their health information, among others. Kansas believes that education on HIT and HIE privacy and security issues is one intervention that can facilitate the process of faster adoption and potentially generate consumer champions of HIT and HIE. Others also support this realization that consumer education can have an impact. eHealth Initiative Foundation found that consumers are more receptive to the exchange of their information electronically when they were better informed.

Kansas is working with 7 other states through this HISPC consumer education and engagement cross-state collaborative to educate and engage consumers about HIT and HIE privacy and security issues. Each State in the collaborative has identified their target audience/s. In this year long project, Kansas will target consumers in rural Kansas. The other States in this collaborative include: Colorado, Georgia, Massachusetts, New York, Oregon, Washington and West Virginia.

In this project, Kansas seeks to:

• Identify diverse consumer’s (in rural Kansas) HIE and HIT privacy and security education needs and solicit feedback on preferences in regards to dissemination of messages.
• Search for, customize, develop (where needed and feasible) and refine, educational materials for informing consumers in rural Kansas about privacy and security of HIT and HIE.
• Develop a communication plan to disseminate the targeted messages on HIE and HIT privacy and security to consumers.
• Pilot test select resources from the toolkit developed.
• Develop a plan to evaluate the impact of the HIT and HIE privacy and security education materials on knowledge and attitudes of consumers in rural Kansas, and to document lessons learned.
• Make education tool kit available to the consumer education and engagement collaborative and others by posting it on the University of Kansas Center for Healthcare Informatics website.
• Collaborate with other States to catalog relevant materials and tools(Click for more information), and to develop a glossary on HIT and HIE privacy and security terms (Click for more information).
• Collaborate with other States to advance education of consumers on HIE and HIT privacy and security issues.

The 2008 Kansas Consumer Education and Engagement Team includes:

• Helen Connors, RN, PhD, Dr PS (Hon), FAAN - Steering Committee Chair and Team Member
• Victoria Wangia, PhD, MS - Kansas Project Manager
• Christina Stephan, MD - Team member