Patients’ experiential knowledge and expertise in health care: A hybrid concept analysis

Abstract

Although the concept of experiential expertise is relatively new in modern health care services, policy, and research, it has profound implications for improving participation in healthcare. The absence of theoretical and conceptual clarity has led to poor understanding and miscommunication among researchers, health practitioners, and policy makers. The aim of this article is to present a concept analysis of experiential expertise and to explain its defining characteristics, applicability, and significance. A combination of Rodger’s evolutionary method combined with Schwartz-Barcott and Kim’s hybrid model was selected as a method for the analysis of the experiential expertise concept. This method combines theoretical (24 definitions) with empirical data analysis (17 interviews). Antecedents, attributes, and consequences are determined. A comprehensive definition is provided, and the interrelatedness between experiential expertise and related concepts was mapped. Experiential expertise is a complex process exceeding the boundaries of individual experiences. Its availability cannot be taken for granted. Using experiential expertise in health care can facilitate patient empowerment leading to improved quality of life and health care. The present study offers clarity by proposing a conceptual model that can assist researchers, policy makers, and health care professionals in facilitating implementations in practice.

Appendices

Appendix 1

Author	Definition
Health care
Borkman (1976)	Experiential knowledge is truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by others. The two most important elements of experiential knowledge are (1) the type of information on which it is based and (2) one’s attitude towards that information. * The type of information is wisdom and know-how gained from personal participation in a phenomenon instead of isolated, unorganized bits of facts and feelings upon which a person had not reflected. This wisdom and know-how tend to be concrete, specific, and commonsensical, since they are based on the individual’s actual experience, which is unique, limited, and more or less representative of the experience of others who have the same problem. *The second element is the certitude that what one experiences indeed becomes knowledge. Experiential knowledge is the ‘‘truth learned from personal experience with a phenomenon’’ and experiential expertise refers to ‘‘competence or skill in handling or resolving a problem through the use of one’s own experience’’
Foundation for learning disabilities	A term used by the recovery movement to draw attention to the value of working alongside service users. A particular approach which acknowledges a person’s capacity to work towards their own rehabilitation
Care Quality Commission (2016) http://www.cqc.org.uk/content/become-an-expert-experience	Experts by Experience are people who have personal experience of using or caring for someone who uses health, mental health, and/or social care services that we regulate
Commission for Social Care Inspection (2009) in Scourfield (2010)	People who have chosen to become more closely involved with the organization, developing their skills, knowledge, and expertise (CSCI 2009) An expert by experience is a person who, because of their shared experience of using services, and/or ways of communication, visits a service with an inspector to help them get a picture of what it is like to live in or use the service. Experts by experience do not need to have experienced an identical service. What matters is that they know what it is like to need a service
Carer Quality Commission (2009) in Scourfield (2010)	Experts by experience are people who are using services now or have done so in the past, people who need services but have not been offered them, people who need services but have not been offered any that are appropriate, people living with or caring for a person who uses services
Burda et al. (2016)	Having the experience of living with a chronic disease implies having experiential knowledge. When this experiential knowledge of patients is joined and shared, a communal body of knowledge—called experiential expertise—can arise Experiential expertise relates to the disorder as a physical–biological and psychosocial entity and relates to social roles in various life domains, such as family, school/work, social networks, public places, and health care services. An essential aspect of experiential expertise is its transmissibility to peers and others and aimed at the benefit of peers. Experiential expertise contributes to the improvement of ways to deal with and solve restrictions resulting from the disorder and the medical regimen, with the emphasis on consequences for daily life. An important aim of transferring experiential expertise is to help people with a chronic disease increase their social integration and societal participation and hence achieve the quality of life they aspire to
Burda et al. (2016)	Patient-specific knowledge is often implicit and concerns the lived experiences of individual patients regarding their bodies and their illnesses as well as cure and care. The first step towards experiential expertise is made when these experiences are converted into personal insights that enable a patient to cope with their individual illness and disability. When experiences are tested and shared by peers, the communal body of knowledge exceeds the boundaries of individual experiences and starts being ‘experiential expertise,’ which can be transferred to peers. Experiential expertise can be regarded as an intersubjective body of competence in terms of attitude, knowledge, and skills, tested and adapted continuously in daily life by the experiential experts themselves
Popay and Williams (1996) in Thompson et al. (2012)	The implicit, direct knowledge, experience, and understanding that an individual has about their body, health, and illness or about health services, care, and treatment
Gielen et al. (2010)	Expertise by experience starts, as the word suggests, from a personal, specific experience related to a problem. At a later stage, that problem is converted to a personal interpretation of the problem. In other words, experiential knowledge is specific and tangible. It is about the tacit and embodied knowledge of an individual. Expertise by experience also has another dimension: it involves the ability to tackle and resolve a problem. By this, Expertise by experience transcends the individual experience. It is more about abstracted knowledge that can be enabled to help others. Expertise by experience is embedded knowledge on a collective level. It is a gradual quality—one can have less or more Expertise by experience—and it is dynamic. Expertise by experience can indeed change over time. It is transferred in self-help groups from peer to peer. Gradually, it also starts to gain ground in regular care, where it is enabled externally. [Own translation]
Currana et al. (2015)	We use the term ‘expert by experience’ to refer to roles beyond the immediate experience of being a service user or carer when that expertise is deployed in other situations, for example, for contributing to student recruitment, teaching, research, policy consultation, or service improvement
de Jonge (1994)	The development of expertise by experience is a process. Combining individual experiences does not necessarily generate experience-based knowledge Experience-based knowledge only arises when analyzing those experiences and when theories based on experiences from the field are generated. Expertise by experience is established through a process where individual experiences are combined and where theories based on experiences that lean on shared experiences are formulated
Deegan (1993)	One can speak of expertise by experience when a patient recovered sufficiently and when he is able to cope with his problems. It also means that the patient can see his illness in a wider context. He has knowledge about his condition and knows which factors contribute to recovery. He also has a view on his condition and the therapies he has followed. With this knowledge, he is able to help others on their way to recovery
Mental health care
Geestelijke gezondheidszorg Eindhoven en de Kempen (2011)	Expertise by experience is a source of knowledge that is founded upon experience, upon the process of recovery and the exchange of your own personal story with the stories of others. The struggle with several complaints, psychological illness, opposition, and uncertainties about choices made are all part of this. In addition, resilience, the ability to find creative solutions and adjustments, the support of others, the new identity, and new experiences are a source of expertise by experience. Therefore, expertise by experience is not something that can be learned through education. It is the ability to apply and use all the knowledge gathered from those experiences. [Own translation]
Boevink (2017)	In order to gain confidence in your own power, and to be able to develop and expand that power, experience-based knowledge is required: knowledge about what improves and what impedes one’s own recovery process. In our view, recovery and empowerment lean on experience-based knowledge and expertise by experience. People who have experienced severe and long-term psychological suffering, all have a unique story. This story encompasses the meaning that people give to their problems and the strategies they develop to cope with these problems. This is the so-called personal experience-based knowledge. Together, all these individual stories form collective experience-based knowledge: knowledge about what it is like to live with psychological vulnerability and its consequences. If someone is capable of transferring this knowledge to others, in any form, we use the term expertise by experience. Expertise by experience is essential for the recovery of people diagnosed with psychological illness. At an individual level, it contributes to the empowerment of peers in their search for their own powers. At a higher level, it clears the way for the influence of clients on the improvement of medical care. [Own translation]
Karbounianiss and Brettscheider (2009)	Expertise by experience is the result of a processing process and of the reflection about… Recognition and acknowledgement are the leading principles. Although knowledge can be meaningful for one’s personal life and the life of peers initially, it should also be verifiable, for instance, by evaluation research Experience-based knowledge is the expertise by experience and knowledge: That is used, and considered useful by experts by experience That is based on the experts by experiences’ own experience That refers to competencies to commit knowledge in favor of a third party (e.g., phrasing emotional experiences) That can be used in several fields and practices But that can be applicable to a specific area and a specific context. [Own translation]
Koningin Fabiolafonds voor de Geestelijke Gezondheid (2009)	Expertise by experience is the specific expertise that was constructed by learning-from-experiences: by taking your own experiences seriously, by processing them for yourself and reflecting on them and additionally by considering similar experiences of others as being serious, by listening to those experiences and assimilating them in own reflections. [Own translation]
Korevaar and Droës (2008)	Expertise by experience is good example of how empowerment works. It encompasses the idea of sharing own experiences with peers. Throughout this process one will gradually learn how own experiences can fit in a ‘we-story’ and how this can be applied to other contexts: e.g., improvement of care, policy making, or political action. [Own translation]
Plooy (2007)	Expertise by experience is a skill, a profession based on specific and mature knowledge. It is embedded in comprehensive literature of experience stories of people with long-term psychological illness. It is knowledge that is supported by scientific research and that leans on the experiences and the development of the client-movement in the 30s. This knowledge refers to the recovery of psychological illness and the support of people with psychological illness. Experiential knowledge is the integration of individual experiences into a commonly shared story. That is expert by experience. When you have the ability to transfer this knowledge in an efficient way, and when you put it at stake for the improvement of the position of psychiatric patients, then you develop something that we could call expertise by experience. [Own translation]
Posthouwer and Timmer (2013)	Expertise by experience is the professional dedication and transfer of knowledge gathered by analysis of and reflection on one’s own experiences and experiences of peers, completed with knowledge from other sources such as literature, presentations, and media. [Own translation]
Ruis et al. (2012)	One can speak of expertise by experience when people offer emotional, social, or practical help and engage personal experiences to help people with similar experiences (peers). [Own translation]
van Erp et al. (2011)	Expertise by experience is the expertise in supporting others to develop your own experiential knowledge and to support the recovery process. At the same time, it is the expertise in the field of more general experience knowledge and the enabling of it in care and in the emancipation and the battle against stigmatization. [Own translation]
Social Work (poverty)
Casman et al. (2010)	This experience is: Assimilated: the capacity of experts by experience to carry out their missions effectively requires, initially, that they have assimilated the experiences acquired all along their own life path spent in poverty Supplemented by specific training: during the first three years of their engagement, these experts by experience follow a part-time training course, which is intended to prepare them to take up their activities within the federal public services Connected to wider horizons acquired by the exchange and the expertise of others’ experiences: these three years of training are an opportunity for the experts by experience of similar mind to be in contact with each other on a regular basis and to exchange thoughts on their respective paths. Moreover, the training process aims at maximizing the dynamics of exchange and expression Gradually enriched by professional experience: finally, expertise acquired through real-life experiences continues to be refined and to become enriched by doing the professional work itself
Spiesschaert et al. (2009)	Trained experts by experience in poverty and social exclusion are persons who have experienced poverty since birth. They have processed and expanded their experience to broader poverty experience, and through training they were handed attitudes, skills, and methods to practice and apply the broadened poverty experience in a well-grounded way in all fields of poverty prevention. [Own translation]
Spiesschaert (2005)	Trained experts by experience in poverty and social exclusion, persons who have experienced poverty, who have coped with and extended this experience and who, through training, have acquired attitudes, skills, and methods to apply this extended poverty experience professionally in one or several areas of the fight against poverty. In other words, they have received the opportunity through training to start or continue their coping process, to extend their experiences with that of others and to develop attitudes, skills, and methods which are important in the field of practice. However, the official designation of the training, as it is recognized by the department of education, differs from the term used in the poverty decree. The latter refers to expert by experience in poverty, while within the department of education, the training is known as training for “experience expert in poverty and social exclusion”

Appendix 2

	Discipline	Gender	Sector	Country
Respondent 1	Expert by experience	f	Medical health	Belgium
Respondent 2	Expert by experience	f	Medical health	Belgium
Respondent 3	Expert by experience	f	Medical health	Belgium
Respondent 4	Expert by experience	m	Medical health	Belgium
Respondent 5	Professional	f	Medical health	Belgium
Respondent 6	Expert by experience	m	Medical health	Netherlands
Respondent 7	Expert by experience	m	Medical health	Netherlands
Respondent 8	Expert by experience	m	Mental health	Belgium
Respondent 7	Expert by experience	m	Mental health	Belgium
Respondent 9	Expert by experience	f	Mental health	Belgium
Respondent 10	Expert by experience	f	Mental health	Belgium
Respondent 11	Professional	m	Mental health	Belgium
Respondent 12	Professional	f	Mental health	Belgium
Respondent 13	Researcher	m	Mental health	Belgium
Respondent 14	Researcher	m	Mental health	Netherlands
Respondent 15	Expert by experience	m	Social work	Belgium
Respondent 16	Professional and researcher	m	Social work	Belgium
Respondent 17	Professional	m	Social work	Belgium