FAMILY VOICES

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FAMILY VOICES

• FAMILY VOICES IN SCHIP TELEHEALTH/TELEMEDICINE
  REPORT
• Portland, OR February 16,2003

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Research Process

• Interviews with projects
• Discussions with experienced parents on important
  issues
• Review by families of children with special
  health care needs
• Focus groups of families who have used
  telemedicine

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Recommendations

• Medical Home- Well-designed Telemedicine
  programs, as part of an integrated health
  services delivery system, can help create Medical
  Homes for children/youth with special health care
  needs

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Recommendations

• Access for everyone- eliminates barriers
• Family Advisory roles- advisory committees will
  be essential. Experienced parents can contribute
  to discussions on policies, evaluations, etc.

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Recommendations (contd)

• Privacy and Confidentiality- key issues for
  families and providers. New strategies are needed
  when multi-sites are involved. Technical staff
  are new partners and need training. Families need
  comfort level regarding the new participants.

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Recommendations

• Preparation of Family- information and materials
  for this new experience are required by parents
  and children.

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Recommendations (contd)

• Technology- providers and families alike need to
  look at and understand the ways that
  telecommunication technologies can both enhance
  and hinder a visit.

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Recommendations

• Neonatal Intensive Care Unit- Use of
  telecommunications is worthwhile for family
  contact, support, education, and information.
  During stays and post-hospital reassurance can be
  cost-effective uses.

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Questions that Remain for Projects and Families
to Consider Together

• 1.Are families achieving the level of involvement
  as advisors to projects to help achieve
  family-centered, community-base, coordinated,
  culturally competent care?

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Questions

• 2. Can appropriate health care be delivered using
  telemedicine technologies? Are there any areas or
  specific diagnoses that would not be appropriate
  for a telemedicine venue?

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Questions (contd)

• 3. Is Telemedicine equally effective for initial
  appointments, consultation/evaluations, and
  follow-up?

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Questions

• 4. Do medical outcomes differ between a
  telemedicine visit and an office visit? If not
  equal, how can they be improved? What barriers
  that limit a telemedicine visit can be overcome?

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Questions

• 5. What about information-related outcomes? Are
  families getting the information they need from a
  visit? Is telemedicine more conducive for this
  than an office visit?

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Partnerships

• Families and states can utilize SCHIP/Medicaid
  payment options to promote telemedicine.

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Partners

• Family Voices will continue in this effort and
  will be happy to work with you.

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Partners

• Current budget concerns and possible changes to
  SCHIP/Medicaid may make it imperative to partner
  around all methods of providing services.

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