Service user involvement for adults

Competence center for lived experience and service development (KBT) is aiming to emphasize user involvement in health services and hospitals.

What is it about?

Pasient- og brukerrettighetsloven [The Patiens’ Rights Act] promises rights for users of health services, and states in § 3-1 that:

The patient is entitled to participate in the implementation of his or her healthcare. This includes the patient’s right to participate in choosing between available and medically sound methods of examination and treatment. The form of participation shall be adapted to the individual patient’s ability to give and receive information. If the patient is not competent to give consent, the patient’s next of kin is entitled to participate together with the patient. If the patient wishes other persons to be present when health care is provided, his or her wishes shall be accommodated as far as possible. [Translation by KBT]

The background for service user participation came from the Universal Declaration of Human Rights in 1948, which established people’s rights to dignity and self-determination in society, their own lives and health. Protests against malpractice in psychiatry and the formation of the first user organizations are among the things that have led the area in the years to come, and given more government initiatives and guidelines.

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”] from 2017 states that the starting point for service user involvement is: “The principle that those affected by a decision, or those who are service users, are given influence in the design of the services … Respect for the individual’s self-determination, legal certainty and autonomy is the basis for patient and service user participation» . Service user will be involved in choices and assessments throughout the process: planning, design, practice and evaluation, and the service must facilitate for best possible involvement and influence.

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] fra 2006 states that the service user perspective is about different degrees of service user participation: service user orientation, service user participation and service user management. Service user orientation implies that professionals engage in the service user’s situation and think as a service user, or that the service user is informed about the services and the staff’s decisions. Service user participation means the service user is actively involved in designing the service with professionals, and that their opinions have a real effect on the decisions taken. Service user management is when service users are in control of the service.

Nasjonalt senter for erfaringskompetanse innen psykisk helse (Erfaringskompetanse) [National center for experience-based competence in mental health] states that professionals represent general and scientific knowledge, but are no experts on the subjective, and define service user knowledge as “the knowledge of lived life”. In collaboration with author Heidi Westerlund, NAPHA and Erfaringskompetanse have compiled the booklet “Mer enn bare ord?” [More than just words?] in 2012, where they try to give an understanding of the words and concepts in mental health work and what lies behind them. They state that service user involvement is about a transfer of experience-based knowledge from service user to service provider. It is emphasized that participation must be a continuous form of work.

Researcher Marit By Rise et al. have through the study  Same description, different values: How service users and providers define patient and public involvement in health care in 2013, conducted interviews with20 service users, 13 service user representatives, and 44 health professionals and managers searched for how service user involvement is understood and what it means. Based on this, service user involvement is defined as: “Mutual respect and recognition – Dialogue with information exchange – Decisions based on shared understanding”.

There is a general consensus that service user participation is an important principle, and there are several reasons for it:

  • Provides better services with higher service user satisfaction; increased accuracy in the design and implementation of health services. Service users are the ones that experience the help, and therefore often have the best suggestions for developing the services that provide the best possible help. It also provides better communication and can provide better relationships, which is a prerequisite for good treatment. Service user involvement is necessary in order to map the needs and challenges and to ensure good services.
  • Self-value for the service user. Receiving help on your own premises through your own choices and resources, and to be listened to with respect, provides a fundamental dignity. This can have a motivational, mastering and therapeutic effect that reduces helplessness and contributes positively to a recovery process. It also gives more participation in decision making and thus greater satisfaction with the decisions taken.
  • In a democratic perspective. The fundament of our society is built on the idea that everyone is an expert on themselves and their own lives. Nothing about us without us.
  • Statutory rights and guidelines that require the service user participation.

Service user participation temporarily includes extensive ethical challenges, which deal specifically with power relationships legitimacy of service user knowledge. In a presentation called “Utvikling og bruk av kunnskap i psykisk helsearbeid” [Evolution and use of knowledge in mental health work] at the conference “Kunnskapssyn og etikk innen psykisk helsearbeid” [Concepts of knowledge and ethics in mental health work] in Trondheim 2017, Professor Dagfinn Ulland asks the question: whose knowledge is valid knowledge? He points out power and powerlessness in relationships, our language, different understanding of each other and situations, the duty of health professional and researcher, interpretations as well as the context and impact of culture.

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 the evaluation of the Opptrappingsplanen for psykisk helse 1999-2006 [National Escalation Plan for Mental Health 1999-2006] shows that there is insufficient work with service user participation.

R. K. Klausen, in Brukermedvirkning i psykisk helsearbeid. En oppsummering av kunnskap [Service user participation in mental healthcare. Summary of knowledge] from 2016 has looked at the needs and challenges in this field, and points out that more systematic work is needed in implementing service user participation in practice. More emphasis is needed on participation and routines for effective cooperation in the individual plan and in transitions between the health care services at hospitals and the municipal health services, especially for the group of people with mental health and substance abuse problems. There is a need for hiring more people with lived experience/peer support workers, which is a relatively new area in the field where it is necessary to agree on the requirements for the position and what the role entails, in order to further develop good learning pathways, hiring routines and position in the service. In research, there is a challenge involving service users from the beginning of projects, and more focus on involvement of service users as active participants is needed; co-researchers whose service user knowledge is legitimized.

Where to find it?

We can divide this into two areas; Individual level and system level.

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.

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.

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

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.

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.

Venues and methods

Service user participation takes place on an individual level on behalf of oneself, at system level on behalf of larger groups, at political level and in research as collaborators. This implies:

Literature

For literature in norwegian, see our norwegian resource pages.

Public documents

Research Articles

Links for more info

For links to norwegian pages, see our norwegian resource pages.

How KBT works with this

KBT is working to systematize service user knowledge in support of service users, professionals and decision makers. Gaining service user experience in a systematic way gives greater weight in service development. We convey the knowledge through lectures, courses and seminars. KBT also strengthens individual service users through courses and meetings- especially with focus on mastering and on raising your own voice.

We do this in the following areas:

St.prp. No. 1 (2008-2009) p. 168 states:

“It is important to increase service users’ knowledge so that they can make demands on the services and be a driving force in service development. At the same time, service user knowledge must be validated and communicated to contribute to real involvement. Mental Health Expertise (finnes det et engelsk navn?) and the regional user-driven centers, together with service user organizations, will be key players in this work. “

About Anne Benschop

Works as a project team member in KBT. Works with Canada-Norway research collaboration, web page and social media.

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