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.

The essay Fremveksten av brukermedvirkning i Norge – strategier og tiltak for å styrke brukeres erfaringskunnskap i teori og praksis [The emergence of service user involvement in Norway – strategies and measures for strengthening the knowledge of service users` lived experience in theory and practice] sums up the development of service user involvement in Norway. It tells us that the opportunity for affected parts to comment on cases concerning themselves for the first time was enshrined in Administration Act of 1967, and continued to be essential in later policies and political guidelines. This grew from demands of justice in development of the Norwegian democracy, later on also put in context with the authorities’ focus on more service minded health services and better use of resources, aiming to meet service users with respect and empathy and counteracting discriminating services. Therefore, the Government implemented Opptrappingsplanen for psykisk helse (1999-2008) [The Escalation Plan for Mental Health (1999-2008)], and introduced “empowerment” as a strategy to show that everyone is useful. A need for systematizing service user experiences emerged, and gathering and support of service user movements and service user organizations became important. The role of these movements bloomed when it came to service user representatives and peer-driven measures, but gathering experiences is not enough by itself – the experiences needs processing to be validated and made useful for health services.

The term “validation of service user knowledge” was used for the first time in a report by Rekdal in 1996, and is defined as “service user experiences benefitting as real valuable knowledge, that are emphasized and used in line with other types of experience and knowledge”. The struggle of perspectives was real; strong and weighty professional communities which had traditionally dominated this field could easily be an obstacle of service user involvement, by assessing it to be in disfavor for the patient in phases of illness. Because of this, there was a need to clarify which perspectives and definitions service users bring forward into collaborations. In 2005, a new subsidy for peer-driven centers was established, aiming to try out different models, retrieve and systematize service user experiences. Together with service user organizations, the establishment of the peer-driven centers was something that made it possible to strengthen service user communities and build up competence as resource for health services and the society. A new development of knowledge had begun, growing larger and larger in times to come. Nevertheless, there are still challenges related to financing service user communities, and also to which degree priorities actually are given to service user knowledge in professional communities and health services.

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?

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).

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.

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.

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.

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 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. 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.

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 information

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.