Where does user involvement occur for adults?

Text by Anne Plathe, 2018. May need some updating.

NOU 1997:2 Pasienten først! – Ledelse og organisering i sykehus [Official Norwegian Reports 1997:2 The Patient First! – Management and Organizing in Hospitals] stated for the first time that service user involvement shall take place in two areas: codetermination in persons own personal treatment (individual level) and influencing the design of the service (system level).

User involvement on an individual level

Forskrift om habilitering og rehabilitering, individuell plan og koordinator [The Regulations on Habilitation and Rehabilitation, Individual Plan and Coordinator] Section 4 state that “The municipality and regional healthcare shall ensure that the individual patient and service user can contribute to the implementation of their own habilitation and rehabilitation offer … Implementation means planning, design, practice and evaluation”.

Brukermedvirkning – psykisk helsefeltet. Mål anbefalinger og tiltak i Opptrappingsplan for psykisk helse [Plan for service user participation: Goals, Recommendations and the National Escalation plan for Mental Health] presents the following goals on individual level:

  • Service users have an influence on their own treatment
  • Service users trust their own therapist/ service provider and experience being met with respect
  • Service users in need of long term and coordinated services have Individual Plans (IP)
  • Service users receive sufficient information
  • Next of kin are cared for
  • Service users are offered training in self-help, management and establishing a network

The plan says something about where this should happen:

  • Information and communication
  • Contributing to the content of the treatment
  • Face-to-face relationships
  • Client- and result controlled therapy
  • Mutual trust between service user and service provider
  • Help in your own home
  • Confidentiality
  • Individual Plan
  • Liability groups
  • Coordinated services
  • Patients under forced psychiatric healthcare
  • Service user participation via guardian, assistant or proxy
  • Administrative procedures in mental health work in municipalities
  • Training to strengthen coping skills for service user and next of kin
  • Recommendations to the services

It is emphasized in Brukermedvirkning i psykisk helsearbeid. En oppsummering av kunnskap [Service user participation in mental healthcare. Summary of knowledge] that the information must be adapted to the individual person and situation, and that good relationships are a prerequisite, which is about meeting the service user face-to-face on a regular basis. It is also emphasized that the services must have routines that ensure the safeguarding and regular evaluation of these rights, and active cooperation with the healthcare services and its employees.


User Interviews User about user involvement

In User Interviews User – «I fear I will never make it out of this»: Evaluation of Involuntary Outpatient Commitment (IOC) from 2015/2016, the patients interviewed told that even if IOC was necessary in some cases, it could be completely avoided by complicity in their own treatment and by health services granting them help at the time they asked for it themselves. They said that this could happen by individual customization and trying out different voluntary measures, continuously conducting evaluations where the needs and experiences of the patient are emphasized.

To gain better quality of life and not worse, there was a big need of control over own life and being heard on personal opinions regarding the treatment. Similar findings are found in User Interviews User-evaluation – Haltdalen District Psychiatric Center (DPS) Sør-Trøndelag from 2012. Coercion could be avoided by being involved in their own process through discussions leading to solutions together. To succeed with these discussions, relationships and trust with the health professionals were highlighted as important.

The service users interviewed accentuated that being part of defining the understanding of the problem is crucial to get the right kind of help where the entirety are cared for, not only focused on medications. One measure experienced as effective by the patients was user-controlled admissions. A deal like this made room for self-managing, which created a feeling of safety and predictability that led to lesser need of help. The service users told that user-controlled admissions prevented dramatic episodes and a lot of stress/anxiety, and led to better use of resources.

User involvement on system level

Helseforetaksloven [The Health and Care Services Act] section 3-10 and the Helse- og omsorgstjenesteloven [Norwegian Health Care Act] section 35, state that the municipality and health care services shall ensure that representatives of service users are consulted in the planning and design of the health services with real impact, and that the services have systems for obtaining the service user’s experiences and views. Section 6-1 of the Health and Care Services Act states that the municipalities need a cooperation agreement with regional health authorities, developed with participation of user organizations, and that service user experiences should be included in this assessment.

Forskrift om ledelse og kvalitetsforbedring i helse- og omsorgstjenesten [The Regulations on Management and Quality Improvement in the Health and Care Services], section 7 and 8 on implementation and evaluation, state that enterprises are obliged to “make use of patients, service users and relatives’ experiences” and “evaluate the activities based on patients , service users and relatives’ experiences”. Veileder om rehabilitering, habilitering, individuell plan og koordinator, kapittel “Medvirkning, informasjon og kommunikasjon” [Guidance on rehabilitation, habilitation, individual plan and coordinator, chapter “Participation, information and communication”] presents the following objectives on system level:

  • Municipalities and  health care services have a system for systematic return of service user experience to develop and quality-assure services
  • Managers and other employees have knowledge of service user involvement
  • Service user participation is part of the service provider’s internal control system
  • User-strengthening measures have been established locally in the municipalities and in health care services
  • User participation is included in all education and training of professionals.


Councils and committees

This often happens through council and selection with service users and representatives from user organizations or user groups. Brukermedvirkning – psykisk helsefeltet. Mål anbefalinger og tiltak i Opptrappingsplan for psykisk helse [Plan for service user participation: Goals, Recommendations and the National Escalation plan for Mental Health] states that they will contribute knowledge at all levels of the service as well as in gaining experience from other service users- this also applies at a political level, where service user knowledge must have real influence in processes and decisions through councils and committees.More specifically, the plan states that this will be done by:

  • Service user councils/service user forums at different levels
  • Service user representatives in project related work
  • Service user organizations as consultation body
  • Service user Ombudsman
  • Service users as employees
  • System for gaining service user experience
  • User driven centersRecommendations for services
  • Children and young people’s service user involvement

Implementation in companies

Marit By Rise et al., in Same description, different values. How service users and providers define patient and public involvement in health care point to some points for implementing this in the services, saying that the prerequisite is clear descriptions of service user involvement that provide meaning and common understanding in context.

It is important to use resources and time at work, and it must comply with other goals and practices. Engagement, motivation and awareness about self-influence and balance of power is important in order to make it anchored throughout the services. Finally, implementation, effects and dividends must be evaluated along the way, and it is important to take time in order to see change.

Peer panels in Trondheim

In collaboration with Trondheim Municipality, KBT has put together and run a peer panel (/-forum/-council) of eight service users with experience from mental health or drug abuse services in the municipality. The aim of the peer panel is to be a partner of dialogue at system level, contributing to development and a different perspective in the service. Their task is to bring forward their meanings about the service in the purpose of improvement, based on what helps and what feels helpful from a service user perspective.

The report by Frode Myhre and Karl Johan Johansen  from ten meetings tells that success factors were documentation in the form of reports from the meetings, and a long period of dialogue, something that led to more qualified statements and higher level of probability regarding the use of the statements in service development in terms of service users.


Need of good information

One of the areas the peer panel worked with was overview and information about the service. There was a big agreement on difficulties understanding the system and finding right services, and the information seemed more targeted at service professionals than service users. The participants concluded a need for making an overview over the different measures and services in the municipality and how these are organized, which have to be made available to the target group through strategies (web pages, apps, brochure…) adapted from the type of information.

This has to contain good explanations on how the different measures/services works, written in a simple language targeted at service users. Another part of the discussion was time and place for information to be shared, concerning that people with mental health and drug abuse problems are living in very different situations, leading to a large variety of needs of services.

Research in the field of health is required service user involvement with descriptions of the degree of involvement, and it must be justified and explained if service user involvement is not included. The involvement of service users in research is about researching with instead of researching on, and it is argued that the quality of research gets better and has greater relevance. This takes into account other perspectives and choice of issues and topics, and different interpretations. The purpose is for the results to be used in the improvement and development of services. Read more about co-research here.