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CHF_ Consumers and Electronic Health Records

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					CHF, Consumers and Electronic
       Health Records


            Amanda Bresnan
   Consumers’ Health Forum of Australia
        Consumers’ Health Forum
              of Australia
• National peak health consumer organisation
  – Established 1987
  – Funding from Federal government, membership
    and specially-funded projects

• Vision – consumers shaping health in Australia

• Mission – to provide an informed and
  respected voice on national health issues
        CHF is membership-based

Voting member organisations represent
nearly 1 million people
  - Population – older people, women, culturally
  diverse groups
  - Illness and self-help – diabetes, asthma,
  arthritis, cardiovascular, HIV/AIDS
  - Health interest – state, community groups
         Electronic Health Records
                  for CHF
• 2000 – consumer workshops in each state and
  territory looking at MediConnect and HealthConnect,
  and computers in general practice
• 2001 - developed Consumers and E-health Project
  Principles
• 2002-04 – consumer representation continues
   – MediConnect Development Group (field tests in
     Launceston, Tasmania and Ballarat,Victoria)
   – HealthConnect Stakeholder Reference Group
            Electronic Health Records
               Project 2004-2005
    Project objectives:
•   Improve communications and engagement with
    consumers and the community
•   Undertake consumer consultations and provide input
    to the Department of Health and Ageing
•   Support informed and effective consumer
    representation on national committees
•   Develop links between consumer representatives at
    State and National levels
           Electronic Health Records
               Project Activities
• Project page on CHF website – www.chf.org.au
• E-health resource group email list
• Consumer Representatives Workshop
   – Best practice principles for consumer participation
     in HealthConnect
• Project information paper and questionnaire
• Member information sessions – TAS, ACT, WA, SA,
  NSW and QLD
            HealthConnect consumer
                  benefits
  Consumer Access
• Consumer access to their own health record
• The record will be available across the country
• Rural and remote consumers’ information is received
  on time when visiting health care providers in larger
  towns or cities

  Safety
• Improved safety through better access to health
  information
• Access to vital medical data in an emergency
• Current medication records help avoid mistakes
            HealthConnect consumer
                  benefits (cont)
    Communication
•   Better understanding of health information through
    developing stronger partnerships between consumers
    and health care providers
•   Better communication between their different health
    professionals is better for consumers
•   Assistance to consumers who may have difficulty
    recalling relevant health information
•   Medical histories will not have to be repeated with
    every visit to a medical practitioner
              Ongoing concerns for
                  consumers
             (moving into implementation)
    Consumer access and control
•   Want to retain control over their own personal health
    information by deciding whether or not to participate
•   Must be able to control who accesses their record
•   Must be able to readily access and make contributions
•   How is the national health identifier being developed
    and how will consumers be involved?
              Ongoing concerns for
                consumers (cont)
    Improving communication on HealthConnect
•   Involve and consult a variety of consumer and
    community groups in the development and
    implementation process
•   How will consumer representatives be selected?
•   Publish the results from all HealthConnect trials and
    MediConnect field tests ASAP
•   How will consumers be informed and involved in
    decisions about the use of personal health information
    for research?
               Ongoing concerns for
                 consumers (cont)
    Security
•   Issues with privacy and consent including for specific
    groups, eg mental health, HIV/AIDS, and women’s
    groups
•   Need to develop strong monitoring and auditing
    processes
    Governance
•   Who will actually have responsibility for the system?
•   Who is ultimately accountable?
         CHF outcomes for 2004-05

• Establishing health consumer networks for consumers
  involved with and interested in electronic health
  records across Australia
• Working with consumer representatives and Health
  Departments in implementation states and territories
  (TAS, SA and NT) and trials states (QLD and NSW)
• Providing support to consumer representatives on
  state and national HealthConnect committees - strong
  links with consumer representatives associated with
  AHIC and the HealthConnect Board
         CHF outcomes for 2004-05
                       (cont)

• CHF Executive Director and a member of Project
  Steering Committee on AHIC – seeking to influence
  NEHTA though this forum
• 2004 consumer representative e-health workshop
• Member information sessions
• Raising consumer concerns as they emerge
• Submission to the HealthConnect Business
  Architecture Version 1.9 (Draft)
            Current key consumers
                    issues
  Consent
• Should consumer consent be required to collect
  personal health information on a national electronic
  health records system?

  Example –NSW Health e-link and amendment to
  privacy legislation
            Current key consumers
                 issues (cont)
  Addressing privacy concerns of consumers
• Should there be specific legislation?
• ‘Your privacy is guaranteed’- how?
• No National Privacy Code.
   – National Privacy Principles apply to private sector
     and health service providers (Federal Privacy Act)
   – Information Privacy Principles apply to
     Commonwealth and ACT Government agencies
     (Federal Privacy Act)
   – States and Territories with a range of approaches
     which apply to hospitals and state-based services
           Current key consumers
                issues (cont)
  HealthConnect information registers, data linkage
  and research
• Are consumers informed about what we do now?
• Can we develop protocols to enable safety and quality
  improvement?
            Current key consumers
                 issues (cont)
  Informed decision-making for consumers
• How can we ensure consumers receive adequate
  information to enable them to make an informed
  decision about participating in the electronic health
  records system?
• Do we have clear and accurate information about
  what HealthConnect is?
         Further information
• See CHF’s redeveloped website
  www.chf.org.au

• Read The Australian Health Consumer

				
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posted:3/25/2008
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