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Stay Informed

Consumer Education and Engagement

Recognizing that electronic health information exchange and health information technology (health IT) in general may be new concepts to many of the health care consumers in their states, the Consumer Education and Engagement Collaborative formed to develop a series of coordinated, state-specific projects to educate consumers about privacy and security. To better inform health care consumers about the privacy and security aspects of electronic health information exchange and health IT, eight states worked together to develop templates, tools, and processes that highlight risks and benefits as well as address common consumer concerns, with a focus on using plain language principles. Materials developed by the collaborative have been tailored to the unique concerns of diverse demographic groups, including urban and rural populations, racial and ethnic groups, consumers with varied literacy levels, and specific populations such as those with mental health or chronic health conditions.

The documents provided below were designed to assist states, organizations, and other stakeholders to reach out to a wide range of health care consumers to increase their privacy and security awareness and health IT literacy.


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Some of the documents listed below do not yet meet section 508 accessibilty requirements. They will be posted as soon as possible.

[Index to Materials Below]

Planning Resources
  • Health IT/HIE Glossary [PDF] [DOC]
    45 consumer-focused terms and definitions
  • Inventory Matrix and Gap Analysis
  • Kansas communication plan [PDF]
    Plan for disseminating educational messages to rural consumers in Kansas.
  • Washington Final report [PDF]
    Overview of lessons from the consumer oriented health record banking project. Report plus appendices
Toolkit Materials

Documents

  • Translating documents into different literacy levels and languages [PDF] [DOC]
    Methods for translating documents into different literacy levels and languages
  • FAQs about HIT/HIE privacy and security [PDF] [DOC]
  • Summary document on risks and benefits of HIE [PDF] [DOC]
  • Tips to protect your privacy [PDF] [DOC]
    Summary document of patient rights under HIPAA, tips to protect privacy and security
  • CORHIO Fact sheet (in English and Spanish)
  • HISPC Fact Sheet [PDF] [DOC]
    Introduction to HISPC for Georgia consumers

Videos

Full Toolkits

  • Georgia Security and Privacy Toolkit
    • Risks and benefits brochure [PDF]
    • HIT/HIE materials (subset of Washington state inventory) [PDF]
    • Web lead-ins [PDF] [DOC]
      Context bridge to links on website
    • Glossary, 45 consumer oriented definitions (from Kansas) [PDF]
    • Consumer questionnaire [PDF] [DOC]
    • Consumer brochure for distribution by physicians [PDF] [DOC]
    • Buck slip to be stapled to pharmacy bags [PDF] [DOC]
    • Poster for physicians' offices [PDF]
    • Email 1 to consumers [PDF] [DOC]
    • Email 2 to consumers [PDF] [DOC]
    • Website information brochure [PDF] [DOC]
    • Online guide to website [PDF] [DOC]
  • Guidance for Developing Educational Materials about Health IT and Consent for Consumers Full Tool

Special Population Toolkits

  • Kansas Web-based Toolkit
  • Sensitive Information Toolkit/Knowledge Library
    • FAQs for sensitive information [PDF] [DOC]
    • Self-directed web-based tutorial on sensitive information [PDF] [PPT]
      Designed to allow consumers to educate themselves on P&S/HIE issues. Includes a template and flow chart on the development of the tutorial for other states to replicate
    • Guide to the self-directed web-based tutorial on sensitive information [PDF]
      Includes a background, description and the process of creating the tutorial
    • Inventory of Massachusetts laws and regulations for sensitive information [PDF] [DOC]
    • Plain Language Consumer Guide [PDF] [DOC]
    • Personal Health Record inventory** [XLS]
      Focus on protecting sensitive information, describes data elements that can be included and exchanged without jeopardizing privacy and security
    • Personal Health Record analysis [PDF]
  • West Virginia Physician Toolkit
  • West Virginia Press Kit
Outreach and Measurement
  • Guidelines for physicians to engage consumers [PDF]
    Guide to engaging consumers about EHRs and Health IT and to gaining consumer acceptance by addressing their privacy and security concerns
  • Guidance for Developing Consent Policies for Health IT [PDF] [DOC]
    New York report provides a framework and guidance to states on developing their own consumer consent policies for participation in health IT
  • Measurement report [PDF]
    Colorado report of recommendations regarding conducting pre- and post-surveys
  • Georgia Campaign Report [PDF]
    Plan for promoting consumer awareness of electronic health information and security and privacy of electronic health information to consumers across Georgia.
  • Georgia Forum PowerPoint [PDF] [PPT]
    Georgia Consumer Outreach Education Forum Power Point Presentation
  • Kansas evaluation plan [PDF]
    Report on the steps KS took to assess the effectiveness of rural consumer health IT and HIE education and engagement
  • Oregon Final Report and Materials [PDF]
    How-to guide for using documentary

Health IT Experiences