Resources
Organizations
American Health Information Community (AHIC) Consumer Empowerment Grouphttp://www.hhs.gov/healthit/ahic/consumer/
AHIC Transition
http://www.hhs.gov/healthit/community/background/AHICsuccessor.html
Agency for Healthcare Research and Quality (AHRQ)
click
here
California Healthcare Foundation
http://www.chcf.org
Centers for Medicare and Medicaid Services
http://www.cms.hhs.gov/
eHealth Initiative
http://www.ehealthinitiative.org
Health Privacy Project
http://www.healthprivacy.org/
Healthcare Information and Management Systems Society (HIMSS)
http://www.himss.org
Markle Foundation
http://www.markle.org/
National Association of State CIOs (Chief Information Officers)
http://www.nascio.org
National Conference of State Legislatures (HIT Champions Listed)
http://hitchampions.org
National Coalition of Mental Health Professionals and Consumers,
Inc. (NCMHPC)
http://www.thenationalcoalition.org/CPP.htm
National Conference of State Legislatures (NCSL)
http://hitchampions.org/
North Carolina Institute of Medicine Task Force on Health Literacy
(NC IOM)
http://www.nciom.org/projects/health_literacy/health_literacy.html
North Carolina Committee on Vital and Health Statistics
http://www.ncvhs.hhs.gov
National Coalition of Mental Health Professionals and Consumers
http://www.thenationalcoalition.org/CPP.htm
National Patient Advocate Organization
http://www.npaf.org
Patient Advocate Foundation
http://www.patientadvocate.org/index.php
Patient Privacy Rights
http://www.patientprivacyrights.org/site/PageServer
Privacy Rights Clearinghouse
http://www.privacyrights.org/index.htm
Global Views on HIT Issues
International Association of Patient Organizations
http://www.patientsorganizations.org/showarticle.pl?id=20&n=310
Canada Health Infoway-establishment of Electronic Health Records
for Canadians
http://www.infoway-inforoute.ca/en/home/home.aspx
The National Health Information Network Page
About the NHIN, World Privacy Forum testimony and Comments, NHIN
resources, NHIN Timeline
http://www.worldprivacyforum.org/medicalprivacy_NHIN.html
Privacy and Security
American Medical Association (AMA) Article on Patient Confidentiality
(May 2007)
http://www.ama-assn.org/ama/pub/category/4610.html
California Healthcare Foundation's Health Privacy Reports and Initiatives
http://www.chcf.org/topics/index.cfm?topic=CL141
eHealth Initiative
Secure
EHI Exchange: A Guide for Consumers
Safe Harbor Information for Data Protection (European Commission
Directive)
http://www.export.gov/safeharbor
Markle's Principles for Consumer Empowerment Breakthrough
http://www.hhs.gov/healthit/ahic/materials/meeting02/cemp/CEmp_principles_breakthrough.pdf
Warnings over Privacy of U.S. Network-Article in New York Times
(February 2007)
click
here
Frequently Asked Questions About Patient Privacy Rights-Patient
Privacy Rights Organization
http://www.patientprivacyrights.org/site/PageServer?pagename=FAQs
Privacy Presentations Given By Dr. Deborah Peel (Patient Privacy
Rights Organization Founder) and other Privacy Rights Advocates--Patient
Privacy Rights Organization
http://www.patientprivacyrights.org/site/PageServer?pagename=Presentations
Surveys Conducted About Health Technology Issues
California Healthcare Foundation's National Consumer Health Survey,
2005
http://www.chcf.org/topics/view.cfm?itemID=115694
eHealth Initiative
Survey
of Consumers on EHI Exchange
Markle Foundation --Personal Health Working Group survey on consumer
attitudes toward a Personal Health Record
http://www.connectingforhealth.org/resources/phwg_survey.pdf
Comprehensive List of Health Technology and Privacy Surveys-Patient
Privacy Rights Organization
http://www.patientprivacyrights.org/site/PageServer?pagename=Polls
Projects and Initiatives
AHIC Use Cases (from HIMSS website)
http://www.himss.org/ASP/topics_FocusDynamic.asp?faid=189
Consumer Empowerment: Consumer Access to Clinical Information Detailed
Use Case (from HIMSS website)
http://www.himss.org/content/files/HITSP/CACIDetailedUseCaseFinal.pdf
Health Information Security and Privacy Collaboration (HISPC)
click
here
HIMSS HIT Dashboard HIT Dashboard
http://www.hitdashboard.com/default.aspx
National Partnership for Women and Families
http://www.nationalpartnership.org/site/PageServer?pagename=ourwork_hcq_hit
The page has links to the Common Framework and the consumer principles
put together by our national coalition of consumer groups.
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-Also has links for information if your
data has been disclosed.
http://www.privacyrights.org/ar/ChronDataBreaches.htm
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