Patientsclients in networks: participation, experiences and dilemmas

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Patients/clients in networks participation,
experiences and dilemmas

• Henk Nies, PhD
• Netherlands Institute for Care and Welfare
• November 30th 2006, NHS Networks Conference

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Or the patient is not an actuarial table she is
your mother!(Beckham, 1996)
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Presentation

• Service users patients, clients
• Underlying views
• Aims of user involvement
• Dilemmas and implementation
• New practices
• Basic questions

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Whats in a name?
Patient Care recipient Enrolee Service
user Consumer Client Citizen
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Whats in a name?
Patient Care recipient Enrolee Service user
Consumer Client Citizen
Passive object Active subject
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Underlying views (1)

• Undergoing care and treatment vs self direction
  a fate or a situation you can influence?
• Choice none, limited or wide ranging?
• Favour vs entitlement?
• Person source of funding vs needing care?
• Public service vs market?

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Underlying views (1)

• Undergoing care and treatment vs self direction
  a fate or a situation you can influence?
• Choice none, limited or wide ranging?
• Favour vs entitlement?
• Person source of funding vs needing care?
• Public service vs market?
• ? People are unlike parcels they act and react
  as (usually) responsible actors

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Underlying views (1)

• Undergoing care and treatment vs self direction
  a fate or a situation you can influence?
• Choice none, limited or wide ranging?
• Favour vs entitlement?
• Person source of funding vs needing care?
• Public service vs market?
• People are unlike parcels they act and react as
  (usually) responsible actors
• And do they all know this? Managing expectations

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Underlying views (2)

• All views co-exist in one system
• All views may co-exist
• Most views are mixed-up
• Views should be in line with the needs of the
  person

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Patients or clients? (based on Van der Plaats,
1994)

• Patients cure
• Disease oriented
• Short term disturbed homeostasis
• Urgent conditions
• Self-direction to be restored
• Intervention aims at restoring the balance

• Clients long term and social care
• Quality of life oriented
• Long term weak homeostasis
• Non urgent conditions
• Often self-direction remains weak
• Intervention aims at supporting the balance

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Users needs

• Patients
• Recovery
• Restore functional autonomy
• Primary needs to be fulfilled
• Information
• Preferences to be met
• Dignity
• Continuity
• ? Linking services

• Clients also
• Find balance in a life with impairments
• Higher needs to be fulfilled
• Compensation and support of functional autonomy
• Feeling co-responsible
• ? Integrating services

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Objectives

• Patients
• Health outcomes
• Satisfaction physical, emotional
• Self-management
• Informed and educated
• Rights and preferences respected
• Treatment with dignity
• Family/carers satisfied and complying, not
  complaining
• Access
• Continuity and transitions
• Safety

• Clients patients outcomes and
• QoL outcomes on all domains of life
• Self-direction/ autonomy
• Carers as part of client system
• Carers as sustainable partners
• Responsibilities, partnership
• Social inclusion/ participation, citizinship
• Decreasing waiste
• Mass-individualisation

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Halfway summing up

• Service users can be patients and clients
• Their perspectives differ
• Passive or active involvement recipient or
  partner?
• Their role and responsibility can be different
  from patient-like, to client-like
• Short term or long term commitment
• The mode and degree of involvement should differ

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Aims in user involvement

• Patients
• Responsibility for own outcomes
• Client-friendly service delivery, preferences met
• Rights are met
• Personal responsibility taken
• Outcomes for buying care and services

• Clients patients and
• Responsibility for own QOL and services
• Social participation/ inclusion
• Responsibility beyond personal domain
• Partnership
• Reducing waiste selective use of services

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How to bring this into practice?

• Questionnaires consumer satisfaction
• Training and education
• Methods of user-directed care, attitudes
• Benchmarking
• Governance codes, structures, organisations
• Charters
• Legislation
• User information
• Personal budgets
• Self care
• Activating methods of user involvement
• User-led services

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But

• Most methods are supply driven
• Triggering socially desirable, middle and higher
  class behaviour
• Verbal behaviour
• Capability of participation
• Poor ICT across sectors
• Tokenism many words, little impact
• Who represents who?
• To whom can the outcomes be attributed?
• Unwritten norm user inolvement is good
• Poorly embedded in daily practice

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New practices

• Experience based methodology the language and
  expercience of the user

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National dementia programme (1)

• Somethings wrong
• What is the matter and what might help?
• Frightened, angry and confused
• I have to cope with it all alone
• They/we are avoiding contacts
• I cannot continue physical care
• Risk of staying at home is too high

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National dementia programme (2)

• Health problems, too
• Loss
• It is getting too much
• Reduced say in matters, no say at all
• For better and for worse
• Miscommunication with care workers
• Resistance against admission

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New practices

• Experience based methodology the language and
  experience of the user
• To organise demand infrastructures and influence
  of users
• Non verbal behaviour photos tell more!
• User led services incl. role of service
  providers
• ICT supported decision instruments
• User involvement as a precondition for
  commissioning/ contracting care
• Attributing responsibility

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Basic questions (1)

• What is relevant to what category of users?
• Short term or long term commitment as a user?
• Patient, client or user?
• Optimum care or optimum life?
• Self-direction?
• Consumer or co-responsible?

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Basic questions (2)

• Can we meet expectations?
• How to implement and sustain good practice?
• How to appoint responsibility?
• Do we see the patient/client as a partner?
• Are our professionals prepared?
• Are our patients/clients prepared?
• Would your mother be happy with our service?

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• h.nies_at_nizw.nl