Avoimuus & vastuullisuus, In English 18.3.2024

Expertise-By-Experience as a Social Ethical Question in the Social and Health Care Sector

Teksti | Karoliina Nikula

It has become more common to use Experts-By-Experience (EBE) in the social and health care sector. EBEs and the EBE phenomenon have been around for a couple of decades. However, there are still several practical and ethical questions within the social and health care sector related to expertise by experience that have not yet been studied or publicly debated or discussed. In this article I ponder some points why expertise-by-experience can be considered as a social ethical question within the social- and health care sector.

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Photo by Leeloo The First / Pexels

In Finland the willingness to use expertise-by-experience is expressed e.g. in the recent Ministry of Social Affairs and Health’s Client and Patient Safety and Implementation Plan 2022-2026 (STM 2022). The importance of a patient-derived approach is also recognized in the strategies of some hospital districts: in the development of co-partnerships and customer orientation, the aim is to use the knowledge produced by EBEs. EBEs are sometimes called service users, clients, customers , consumers, participants, patients (see e.g. McLaughlin 2008). Also e.g. The Criminal Sanctions Agency (Rikosseuraamuslaitos 2022) has recently mentioned EBE’s in their stakeholder cooperation guidelines.

The Finnish Institute of Health and Welfare (THL) frames expertise-by-experience under participation and inclusion (THL 2022). One key aim in the social and health care reform in Finland is to enhance the user orientation and services for individuals (person-centred services, people-oriented care and services), equality and accessibility. According to THL (2022) these aims shall be reached by strengthening customer participation.

EBE activities have often been justified as a way of developing services, and increasing democracy, participation, and patient involvement. That can be compared to Public and Patient Involvement, the so called PPI. Participation is mentioned in Finland also in the law as well. (see e.g. Constitution [perustuslaki 731/1999, 2. and 14. §], municipal law [kuntalaki 410/2015, 22 §], Social Welfare Act [sosiaalihuoltolaki 1301/2014] and Act on the Status and Rights of Social Welfare Clients [laki sosiaalihuollon asiakkaan asemasta ja oikeuksista 812/2000].

Expertise-by-expertise can be seen in particular as a social ethical question. I will name few examples in the following chapters. According to Pruuki (2007, 21), social ethics studies the values, choices and ethics of society, community and unit. Social ethics can also be characterised as a field of applied ethics that addresses issues of equality and social justice (Tieteen Termipankki 2022). Social ethics is also particularly interested in concepts: concepts can be used to understand and specify morally relevant issues that arise in communities (Sosiaalietiikka.fi). (See also Nikula 2023.).

Although it has become more common to use EBEs and experiential knowledge, it is relevant to ask is it still possible to speak about actual empowerment and authentic participation through EBE activities? Critics describe EBE activities as providing no more than a semblance of democracy and EBEs only as “mascot” for projects in the social services sector (Meriluoto 2018). According to Meriluoto (2018) in the projects she studied the primary aim is to produce consensus-seeking partners out of EBEs. This can be seen as an ethical question too: do EBEs actually have real power to be heard and does it truly matter what they say in the activities they are involved? What is their agency like?

Experiential expertise is an interesting concept. The concepts concerning expertise-by-experience are not settled. It is sometimes unclear what is even meant by expertise-by-experts, how to ethically make “use” of expertise-by-experts, and who can use experience in social and health care, based on what prerequisites. According to Meriluoto (2018, 12) expert-by-experience “is a term used to refer to people who have undergone problematic experiences in their past and have then been invited to act as experts based on those experiences in social welfare and healthcare organisations.“

The EBE-educational field is wide and vague (Hirschovits-Gerz ym. 2019), that can create ethical challenges as people do not know what to expect from the education nor an educated EBE. There is no well-established ethical code of conduct, as in many social and health care sector professions. Expertise-by-experience is not necessarily officially regulated, as professionals in the social and health care sector are. In the health care sector especially, which is strongly regulated, it is still often unclear how shared expertise or expertise-by-experience may sustainably, legally and ethically be applied e.g. within different clinical practices.

Experts-by-experience can have diverse backgrounds, e.g. mental health, criminality, disability, minorities, different cancers etc. Among these experts, people are differently educated, equipped and also experienced in working life and within social and health care sector organizations and systems. All this might also play a role in how a person is treated by professionals, and what kinds of competences they have e.g. verbalize one’s experiences, communicate in a formal meeting, understand how organizations operate etc. Also it is relevant to ask are traditional professionals well prepared to utilize experiential knowledge offered by EBE’s and how to co-operate with EBEs. Many EBEs are trained to become EBEs, but have social and health care professionals received training to work together in shared expertise and shared knowledge with them?

According to Björklund (2008, 39-40), one of the tasks of social ethics is to present alternative models of thought. Expertise-by-experience can be seen as an alternative way of thinking about, e.g., the development of services (see also Nikula 2023) and power structures. Expertise-by-experience does not always come without challenges regarding ethics nor practical issues either. Yet EBEs have been around for quite a while already, ethical questions regarding EBE activities have not been studied nor pondered a lot publicly (see also Nikula and Rajamäki 2019; Ristolainen 2017, 16) and many ethical questions regarding EBEs would demand further research.

References

URN http://urn.fi/URN:NBN:fi-fe2024031811721
henkilökuva.
Karoliina Nikula
karoliina.nikula(at)laurea.fi
Principal Lecturer

ethics expert-by-experience social and health care

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