Resources

Organizations

• AHIC Transition
  
• Agency for Healthcare Research and Quality (AHRQ)
  
• California Healthcare Foundation
  
• Centers for Medicare and Medicaid Services
  
• eHealth Initiative
  
• Health Privacy Project
  
• Healthcare Information and Management Systems Society (HIMSS)
  
• Markle Foundation
  
• National Association of State CIOs
  
• National Coalition of Mental Health Professionals and Consumers, Inc.
  
• National Conference of State Legislatures
  
• North Carolina Institute of Medicine Task Force on Health Literacy
  
• National Committee on Vital and Health Statistics
  
• National Coalition of Mental Health Professionals and Consumers
  
• National Patient Advocate Organization
  
• Patient Advocate Foundation
  
• Patient Privacy Rights
  
• Privacy Rights Clearinghouse
  

Global Views on HIT Issues

• International Association of Patient Organizations
  
• Canada Health Infoway
  
• The National Health Information Network
  

Privacy and Security

• American Medical Association (AMA) Article on Patient Confidentiality (May 2007)
  
• California Healthcare Foundation's Reports on PHRs & Privacy
  
• Markle Foundation: Consumer Empowerment
  
• Warnings over Privacy of U.S. Network-Article in New York Times (February 2007)
  
• Frequently Asked Questions About Patient Privacy Rights-Patient Privacy Rights Organization
  
• Health Privacy Presentations: Patient Privacy Rights Organization
  

Health Surveys

• California Healthcare Foundation's National Consumer Health Survey, 2005
  
• Markle Foundation health Surveys
  http://www.connectingforhealth.org/resources/phwg_survey.pdf

Projects and Initiatives

Consumer Empowerment: Consumer Access to Clinical Information Detailed Use Case (from HIMSS website)
http://www.himss.org/content/files/HITSP/CACIDetailedUseCaseFinal.pdf

National Partnership for Women and Families
http://www.nationalpartnership.org/site/PageServer?pagename=ourwork_hcq_hit

NHIN Watch News (from Healthcare IT News)
http://www.nhinwatch.com/performSearch.cms?channelId=2&resultsPage=3

State Alliance for E-Health Initiative--National Governer's Association for Best Practices
click here

State RHIO Consensus Project
http://www.staterhio.org/

Laws, Regulations and Enforcement

Department of Health and Human Services (DHHS) Office for Civil Rights--HIPAA
http://www.hhs.gov/ocr/hipaa

Summary of HIPAA Privacy Rule-Same as above, but a summary
http://www.hhs.gov/ocr/privacysummary.pdf

NC General Assembly website
http://www.ncga.state.nc.us/homePage.pl

Readability of HIPAA Notices
http://www.privacyrights.org/ar/HIPAA-Reading.htm

Wired for Health Care Quality Act (from Senator Ted Kennedy's website)
http://www.tedkennedy.com/content/157/the-wired-for-health-care-quality-act

Wired for Health Care Quality Act of 2007 (from e-Health Initiative website)
http://www.ehealthinitiative.org/initiatives/policy/wiredsummary.pdf

Your Rights Under HIPAA-Patient Privacy Rights Organization
http://www.patientprivacyrights.org/site/PageServer?pagename=YourRights

Data Breaches

Chronology of Data Breaches (Privacy Rights Clearinghouse).

Health Privacy Stories (Health Privacy Project Organization)
http://www.healthprivacy.org/usr_doc/Privacystories.pdf

PHRs, EHRs, other Health Technology and Information Exchange

PHRs

• Health Privacy Project's PHR's best practices
  http://www.healthprivacy.org/info-url_nocat2302/info-url_nocat_show.htm?doc_id=622340
• Health Insurers Create Personal Health Records-InfoWorld (December 2006)
  http://www.infoworld.com/article/06/12/13/HNhealthinsurers_1.html
• Personal Health Records Overview--Center for Medicare and Medicaid Services
  http://www.cms.hhs.gov/PerHealthRecords/
• Are PHR Records Breaking Out?-Forrester Research (June 2006)
  http://www.forrester.com/Research/Document/Excerpt/0,7211,39415,00.html
• Five Major Employers Announce Personal Health Record Initiative-Healthcare IT News (December 2006)
  http://www.healthcareitnews.com/story.cms?id=6032
• Information on Shopping for a PHR-Patient Privacy Rights Organization
  http://www.patientprivacyrights.org/site/PageServer?pagename=Marketplace
• For a Complete Medical History, Compile Your Own Health Records
  but be Cautious about Storing Them Online-Patient Privacy Clearinghouse (June 2006)
  http://www.privacyrights.org/ar/keepmedfile.htm
• AHRQ Web Conference on PHRs (March 5, 2008)

PHR Vendors

• List of PHR Vendors: http://www.telemedical.com/Telemedical/personalhealthrecordsystems.html
• How to find a PHR Vendor: http://www.myphr.com/resources/phr_search.asp
• http://www.capmed.com/solutions
• http://www.followme.com (has a significant following among the migrant farm worker population). There are some useful articles under the 'Press' section, though some of the links are broken.
• http://www.revolutionhealth.com has a free PHR
• http://www.myphr.com
• http://www.ihealthrecord.org
• http://www.passportmd.com
• Patient Portal: http://www.misyshelathcare.com/Products/Product+Portfolio/Mi
• Comparison of Google Health (GH) and Microsoft HealthVault (HV)

EHRs

• Misys Optimum Electronic Health Records (EHR)
  click here
  
• Coalition Including Intel And Wal-Mart Plan Electronic Medical Records For Employees-InformationWeek (December 2006)
  http://www.businessinnovation.cmp.com/articles/res_strat_061211.jhtml

Information Exchange

• NHIN (Nationwide Health Information Network) Background
  http://www.hhs.gov/healthit/healthnetwork/background/
• NHIN Watch (Nationwide Health Information Network)
  http://www.nhinwatch.com/
• US Nationwide Health Information Interoperability (April 2007)
  http://www.himss.org/ASP/topics_hitsp.asp?src=enews20070425
• International Standards Organization (ISO) 17799:2005 Information Technology-Security Techniques-Code of Practice for Information Security Management
  click here
  
  
  

Health Literacy and Education

Technical Glossary-Patient Privacy Rights Organization
http://www.patientprivacyrights.org/site/PageServer?pagename=glossary

Agency for Health Research and Quality (AHRQ )-National Resource Center for Health Information Technology-Knowledge Library
click here

Association of American Medical Colleges (AAMC)-List of Electronic Health Record Resources
http://www.aamc.org/patientcare/ehrresources/start.htm

North Carolina Institute of Medicine-Task Force on Health Literacy
http://www.nciom.org/projects/health_literacy/health_literacy.html

EHealth Terms in Plain English
http://www.aishealth.com/EHealthBusiness/EHealthTerms.html

EHR Terminology
http://www.emrconsultant.com/glossary.php

Glossary of Health Care and Health Care Management Terms-Provided by Health Services Information Library Information Center (UW School of Public Health and Community Medicine)
http://depts.washington.edu/hsic/resource/glossary.html

Healthcare Coverage Glossary (Blue Cross Blue Shield)
http://www.bcbs.com/coverage/glossary/index.html#h

Issues Based on Interest Groups

Medicare to Test Personal Health Information for Senior Citizens - Article from Senior Journal (July 2006)
http://www.seniorjournal.com/NEWS/Medicare/6-07-26-MedicareToTest.htm

Medicare Services Agency Tests Personal Health Records-eWeek.com (July 2006)
http://www.eweek.com/c/a/Health-Care/Medicare-Services-Agency-Tests-Personal-Health-Records/

Design of a Knowledge-Structured Personal Health Record for Application
in Preventive Care for the Elderly-MedInfo (2004)---Example of French Application
http://www-test.biomath.jussieu.fr/~pz/FTPapiers/Ghez_MEDINFO2004P

Research

Consumer Empowerment in Healthcare Information Exchange: An Investigation Using the Grounded Theory Approach (2008, 396 pp). Sherrie Drye Cannoy, PhD.

AcademyHealth
http://www.academyhealth.org

Kay Center Symposium
http://www.cgu.edu/pages/4219.asp

Dorenforest Institute for Health Information (through HIMSS)
http://www.himss.org/foundation/histdata.asp

McDowell Research Center
http://www.uncg.edu/bae/mrc

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