TIGER Consumer Empowerment & Personal Health Record Collaborative
Working together using this wiki
This wiki is a shared online whiteboard that allows the entire group to easily share information to each other and other TIGER collaborative team members. The material on the wiki should be considered to be in draft format and will be published on the TIGER website at www.tigersummit.com upon completion.
Activities of Work Group 3
This work group will prepare a current "state of the science" overview on consumer empowerment and personal health records as outlined below. It is intended that this team's work will use the wiki to develop and post content and be concluded by July 1, 2008.
Content Outline
(Note: We are looking for members to select topics and/or contribute content to these sections. Please post a brief annotation or explanation with each item anywhere under the outline listed below.)
Personal Health Record - Overview
1. Current state - definitions and standards (use work from WG #1 and WG #2) - David Sweet/Don Mon (standards/AHIMA/CCHIT)
Personal health records definitions benefits and strategies for overcoming barriers to adoption.pdf
2. PHR offerings, markets, and suppliers in use today - NLM and AHIMA collaborative - David Sweet
3. Nurses' role in use/care delivery - WG#4 results (Rita)
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Adapt AHIMA survey questions for nursing. (Donna, Rita, Charlotte Ruth,Julie) Use ANI and member organizations to distribute survey. Needs to be completed with results by end of July
- AHIMA survey results. Executive Summary written by Julie Wolter;
http://library.ahima.org/xpedio/idcplg?IdcService=GET_HIGHLIGHT_INFO&QueryText=%28Defining+the+Personal+Health+Information+Management+Role%29%3cand%3e%28xPublishSite%3csubstring%3e%60BoK%60%29&SortField=xPubDate&SortOrder=Desc&dDocName=bok1_038473&HighlightType=HtmlHighlight&dWebExtension=hcsp
4. Expert sources, web sites, grants, references, major conferences
Web sites
Conferences
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Center for Business Innovation (CBI)/California for Telehealth Center - July 7-8,2008 - San Francisco, CA http://www.tcbi.org/hu2008/index.htmlHU_2008_Brochure.pdf - Fifth Annual Healthcare Unbound Conference & Exhibition
A Conference & Exhibition on the Convergence of Consumer & Healthcare Technologies
Special Focus on Remote Monitoring & Home Telehealth
for Managing Diseases & Promoting Wellness
Markel - CommonFramework report http://www.connectingforhealth.org/resources/CCPolicyBrief.pdf Grants
- AHRQ
- RWJF's Project Health Design
Contracts
- CMS
- ONC
- HISPC Collaborative (contract)
http://privacysecurity.rti.org/ national web site for HISPC; KU's site for consumer education content and tools at: http://www2.kumc.edu/healthinformatics/HISPC/CEEC.htm
HIMSS PHR Survey Results
CITL_PHR_Report.pdfThe Value of Personal Health Records report examines the value proposition for implementing personal health records (PHRs) thoughout the US.
This analysis quantifies the cost-benefit of a variety of infrastructure, administrative, and clinical PHR functions including:
- Sharing of complete medication lists
- Sharing of complete test results
- Appointment scheduling
- Medication renewals
- Pre-encounter questionnaires
- E-visits
- Congestive heart failure (CHF) remote monitoring
- Smoking cessation management
CITL modeled these eight functions for provider-tethered, payer-tethered, third-party, and interoperable PHRs, examining differing deployment strategies to achieving 80 percent adoption by the US population. The report includes a detailed cost model for each type of PHR system.
5. Health policy trends - incentives for consumers, providers, etc.
Connecting for Health - News - Press Release.htm
(NCQA: Washington) -- The National Committee for Quality Assurance recently launched a new version of its physician practice connections (PPC) program designed to assess how medical practices are functioning as patient-centered medical homes. The new PPC—patient-centered medical home (PPC-PCMH) emphasizes the systematic use of patient-centered, coordinated-care management processes; click on the link below for the full article: http://tinyurl.com/2epd32
A) CMS role - (Suzie)
B) ONC - AHIC and CCHIT (Donna)
C) AHRQ (Suzie/Charlotte)
D) Proposed legislation
Consumer Empowerment - Overview
1. Consumerism in Healthcare - definitions and standards (use work from WG #1 and WG #2)
2. Trends in promoting consumer behavior
ConsumerInternetUse.pdf recent survey done by CHCF
CHCF 2008 HelpingPatientsPlugIn.pdf New report from CHCF on consumer use of online tools, including case examples from 5 states
OCR Releases HIPAA Privacy Consumer Brochures in Eight Languages.doc recent announcement by OCR on consumer education of HIPAA
3. Health literacy
- Definitions for consumerism and health literacy (AHRQ - pharmacy info pkg for consumers, providers, etc. - Susan)
- Behaviors around consumerism and health literacy
Understanding Your Caregivers_JCAHO.doc
https://www.google.com/health/html/about/ Google Health has section of health information data
http://blogs.patientempowerment.net/?p=24 Patient empowerment blog with information about Kroger memory sticks
- Strategies to improve health literacy for vulnerable populations (e.g., spanish-speaking kiosks - Hahn - Susan)
6. Programs to address/drive/promote consumerism
7. Health policy for implementing consumerism
-
States
-
Grant designed to provide better access to vulnerable populations--e.g,. disabled (Ruth - MN St. Scholastica), Regional; Federal (Linda obtaining information from Susan Daniels on disabled population) PHR_Policy Expert on Disabilities.doc
-
Enabling legislation
- Economic models; health insurance - paying for prevention
-
Provider-Payer focused
8. Models of care that enable consumer empowerment and patient-centered care (e.g. On-Lok; EH Wagner,MD; Bodenheimer-Chronic care model, "Medical Home", Patient-Centered Care Center, etc.) - Nancy Fahey
http://content.healthaffairs.org/cgi/content/full/20/6/80#SEC2 – Health Affairs - Consumer-Directed Services At Home: A New Model For Persons With Disabilities
http://www.hhs.gov/healthit/ahic/materials/summary/cesum_091207.html American Health Information Community Consumer Empowerment Workgroup
http://www.ura Complete list of winners of the Best Practice in consumer Empowerment and Protection Awards
http://www.ihi.org/IHI.Topics/ChronicConditions/Diabetes/Tools/ChronicCareModelAudiovisualPresentation.htm A 57 minute presentation on Chronic Care Model by Dr. Ed Wagner, Director of Improving Chronic Illness Care national program.
http://improvingchroniccare.org/change/model/modeltalk.html American Academy of Family Physicians (AAFP) access to Chronic Care Model
http://www.medicalhomeinfo.org/Joint%20Statement.pdf The Patient Centered Medical Home (PC_MH) approach to providing comprehensive primary care for children, youth and adults.
http://www.hhs.gov/healthit/documents/ConsumerEmpowerRegMedUseCase.pdf
http://www.bcbs.com/news/bcbsa/industry-leaders-announce-phr-model.html Industry Leaders announce personal health record model; collaborate with consumers to speed adoption
http://www.vivici.wordpress.com/2007/10/26/a-personal-health-care-record-phr-based-on-international-open-standards-facilitates-true-patient-empowerment A personal health care record phr based on international open standards true patient empowerment
PHRs in Underserved or Underrepresented Communities
California MiVIA™
MiVIA™ was launched in 2003 as a personal health record for migrant and seasonal workers in Sonoma Valley, California. Today MiVIA™ provides an electronic record for several thousand people and their families across the country. https://www.mivia.org/
9. Information technology enabling consumer empowerment and personal health records (e.g., Microsoft Personal Health Vault integrating device data into PHR - Susan CB; Google/Cleveland Clinic - Rita Z - allow patients to untether their PHR; ubiquitous kiosk stations in libraries, Wal-marts, etc. - Susan)
*technology strategies to make PHR portable (Google/CC)
http://www.mydigitallife.info/2008/02/23/google-in-heath-management-service/
Life Record EMR On the iPhone http://emr.liferecord.com/emr/index.html
Emergency Data: MyVitalData http://www.vitaldatatech.com/sol_myvitaldata.htm
Employer Sponsored PHRs (e.g., Wal-Mart; Google; Microsoft, etc.)
http://www.dossia.org/home
http://www.dossia.org/news/useful_links/1472-6947-7-25.pdf
Report cards, other tools
11. Defining Key Health Information Technology Terms - April 28, 2008
http://www.nahit.org/cms/images/docs/hittermsfinalreport_051508.pdf
Group members
- Charlotte Weaver - Lead
- Nancy Fahey
- Julie Wolter
- Ruth Walker
- Jill Burrington-Brown
- Linda Dietrich
- Susan Conaty-Buck
- David Sweet
- Rita Zielstorff
Resources
PHR Do they work.doc
PHR Google launch.doc
http://www.worldprivacyforum.org/pdf/WPF_PHRConsumerAdvisory_02_20_2008fs.pdf
http://www.deloitte.com/dtt/cda/doc/content/us_chs_ConsumerSurveyExecutiveSummary_200208.pdf
http://www.chcf.org/documents/chronicdisease/WhoseDataIsItAnywayIB.pdf
http://edition.cnn.com/2008/HEALTH/02/07/ep.if.i.die/index.html
http://www.connectingforhealth.org/commonframework/docs/T7_consumer_authen.pdf
http://www.healthdatamanagement.com/news/PHRs25549-1.html?ET=healthdatamanagement:e257:117175a:&st=email
http://www.ahrq.gov/consumer/phrvid.htm
http://www.healthprivacy.org/files/Best_Practices_Press_Release.pdf
http://www.healthline.com/signin.jsp
http://www.myhealth.va.gov/
Employer Consortium Pushes PHRs
Microsoft Health vs.Google Health
Vault http://www.mydigitallife.info/2008/02/23/google-in-heath-management-service/
http://www.centerforhit.org/x2022.xml Listing of EHR and PHR
http://cms.clevelandclinic.org/body.cfm?id=227&action=detail&ref=815 Description of partnership between Cleveland Clinic and Google Health
Upcoming Conferences
Consumer Health Informatics: An Intensive Learning Experience
April 11 to 13, Claremont, Calif.
Meetings
Next Meeting:
Wednesday, May 28, 2008 at 10 a.m. Eastern
Please register at https://www1.gotomeeting.com/register/478932088
Wednesday, June 11, 2008 at 10 a.m. Eastern
Please register at https://www1.gotomeeting.com/register/441152165
Meeting archive:
Wednesday, April 30, 2008 at 10 a.m. Eastern/9 a.m. Central
Tuesday, May 13, 2008 at 12 noon Eastern/9 a.m. Pacific
Drafts
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