Mechanisms to promote community participation in health care

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Mechanisms to promote community participation in
health care
Laura Zurita, lz_at_tekno.dk CRICS6, 6-9 May 2002
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• Ms. Sc. International Studies
• Project Manager at the DBT- Participatory
  processes
• Researcher at the Aalborg University Patient
  centred health system

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Agenda

• Institution
• Background
• The project Electronic health records (EHR)
• Method
• Results/perspectives

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Danish Board of Technology-Profile

• Build bridges between citizens, experts and
  politicians
• Serve democratic decision-making with input and
  processes
• Close connection with the Folketing (Parliament)

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Participatory processes- The need

• New relations between science and society
• Alternative sources of knowledge
• Social based foresight

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Layman assessment- Issues

• Need expert knowledge
• Disagreement between experts
• Broad social relevance
• Alternative dimensions

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Layman assessment- Rationale

• Reveal knowledge and resources of citizens
• Include alternative rationalities
• More robust decisions Extended peer review

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Actors in a policy issue
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Actors in a policy issue- Lobby
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Actors in a policy issue- Stakeholder
participation
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Actors in a policy issue - Layman assessment
projects
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Beliefs about normal people

• Ignorant
• Short-sighted, easy to manipulate
• Christmas syndrome

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Empowerment of citizens

• Remove layers of interpretation
• Give time
• Information
• Debate - public sphere
• Enable them to set the agenda

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Representativity

• Representativity of the panel
• Who is representating who, and I what account?
• Personal analog representativity
• Group political representativity
• Self assigned representativity

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Participation models Layman assessment
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Electronic health records

• Major public investment
• The future health system
• Patients as users of the system

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Method

• Consensus Conference
• (Development Space)

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Participants

• Citizens as individual stakeholders and members
  of the society.
• 20 members- demographically mixed.
• Patients and not.
• Active enquiry process.

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Process

• Two preliminary weekends for
• Education
• Deliberation
• Set the agenda
• One final conference
• Web debate

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The experts

• Representing different interest and areas of
  expertise
• Complementary professionalism
• Cognitive and normative experts
• Suggesting pragmatic decisions

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The final conference

• The citizens ask questions
• Debate among experts and citizens.

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The result

• Write a final consensus document.
• The document is delivered to politicians, the
  media, experts and interested citizens.

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Consensus

• It is not
• A majority decision
• The result of a negotiation
• The lesser common denominator
• It is
• The common ground of the panel
• An instrument to dialog

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Results

• Respect the legislation about informed consent-
  privacy is important
• Patients should be able to access their HER
• Patients as active collaborators

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Results- Continuation

• HER systems have to be compatible
• Involve the health personnel in the development
  of EHR

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Conclusions

• Citizens/Patients are capable of informed
  decisions

Pero el honor es patrimonio del alma, y el alma
sólo es de Dios Don Francisco Lope de Vega
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Conclusions

• Citizens/Patients are capable of informed
  decisions
• Privacy is a priority
• Patients want to participate in their own health

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Perspectives

• Citizens as peers - Patients as subjects
• Patient centred health system
• Web based methods have to be developed

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• Thank you for your attention
• Lz_at_tekno.dk
• Zurita_at_plan.auc.dk