User involvement – what is it all about?

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

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

Rights regarding user involvement in Norway

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]

 

Background for user involvement

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.

 

The Escalation Plan for Mental Health

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.

 

Peer Driven Centres

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.

 

User orientation and participation

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.

 

The knowledge of life

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”.

 

The principle of user involvement

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.

 

Ethical challenges

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.