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Links & Documents

Here are some resources for you if you are looking for more information and education about personal health records (PHRs), health record banks (HRBs) and more.

We’ve gathered some interesting reports and resources regarding personal health records and related subjects for your information. Are there other resources we should add to our list? Let us know—email us at info@AccessMyHealth.org.

PHRs, EMRs & HRBs

• HIMSS PHR Tools for the Consumer – HIMSS site with links for healthcare IT professionals with a look at the PHR tools and services currently available to consumers.
• Florida Personal Health Record Toolkit – Information about electronic health records, including what to look for in a PHR, and resources such as videos, checklists, and more.
• AHIMA Health Information Video – You Tube video that explains the importance of electronic health records in an easy-to-understand and engaging way.
• AHRQ Personal Health Records Video – Video from the Agency for Healthcare Research and Quality on the importance of gathering your own information and maintaining a personal health record.
• myPHR education site—AHIMA (American Health Information Management Association) site containing a wealth of information and resources on personal health records.
• Consumer Checklist [PDF]—A consumer checklist of policies and practices to look for from organizations that collect your personal health information. From the AMIA. (American Medical Informatics Association)
• Sample Health Information form [PDF]—Sample of a Health Information Form for Adults from AHIMA. (American Health Information Management Association)
• PHR Checklist [PDF]—A sample checklist from the Florida Agency for Health Care Administration.
• Electronic Medical Record FAQ [PDF]—Frequently asked questions about EMRs.
• Health Record Banking Imperative: A Conceptual Model [PDF]—Paper published in IBM Systems Journal by Gold and Ball describing health record banks.

Privacy & Security

• Privacy Rights Clearinghouse – Fact sheets, speeches articles and more on medical privacy from a nonprofit consumer information and advocacy organization.
• Health Information Security & Privacy Collaboration—Glossary Project – A glossary of terms for Health Information Technology and Health Information Exchange privacy and security matters.
• HIPAA Myths and Facts [PDF]—Common myths regarding the HIPAA Privacy Rule and the facts about what the law actually says.
• How Safe Are My Records? Online Health Records: What’s the Big Deal? [PDF]— Interesting opinion piece by Jeff Cogswell published in eWeek about the difference between the terms “on the Internet” and “accessible through the Internet”.
• Health Privacy: Know Your Rights [PDF]—A two-page document that talks about your protections and rights so that you can protect your personal medical records.
• Health Privacy Project—Find out more about privacy and security.

National Research & White Papers

• Summary: Institute of Medicine’s To Err is Human: Building A Safer Health System [PDF]—Summary of a report, issued in September 1999, that lays out a comprehensive strategy by which government, health care providers, industry, and consumers can reduce preventable medical errors.
• Perspective on the Future of Personal Health Records 2007 [PDF]—A document prepared for the California HealthCare Foundation by Christopher J. Gearon and other contributing writers. Explores the pros and cons of personal health records by presenting the perspectives of six experts—a technologist, an informed patient, a physician, an employer, and a public health official.
• Connecting Americans To Their Health Care: A Common Framework for Networked Personal Health Information [PDF]—A document prepared by a public-private collaboration called Connecting For Health. Explores the use of information technology to meet the critical needs of consumers, patients and their families.
• Deloitte 2008 Survey of Health Care Consumers Executive Summary [PDF]—A document prepared by Deloitte Center for Health Solutions. Summarizes the findings of a study on health care consumerism. Topics include consumers’ behaviors, attitudes and unmet needs related to health, health care and health insurance.
• Greater Louisville E-Health Research Report 2007 [PDF]—Reports on a research study to understand the perspectives of the Greater Louisville area community regarding the development of a community health record banking service. The study was conducted by Noblis, Inc, working in partnership with LouHIE with support from University of Louisville School of Public Health and Information Sciences, Department of Health Management and Systems Sciences (UofL).
• Whose Data Is It Anyway? Expanding Consumer Control over Personal Health Information [PDF]—An Issue Brief from the California HealthCare Foundation. Explores important issues that must be addressed if consumers are to have meaningful legal rights to access, use, and control their electronic health information.