Introduction

This book, entitled Experience in Healthcare Innovation: Fad or New Paradigm?, follows the international conference held in June 2021 on health innovation through shared perspectives, and even experiences combining the knowledge of each person. Through this book, the opportunity is given to contributors (who may or may not have participated in the conference) to, shed light on the subjects covered. In-depth studies can, for some, take up questions asked during the discussions following the communications presented during the 2021 conference.

The 2021 conference was the result of an initiative born in 2008. The KEDGE Business School health conferences are organized by Corinne Grenier1 in partnership with the social work research institutes (IRTS) of Provence-Alpes-Côte d’Azur-Corsica and Nouvelle Aquitaine, with the support of the ARAMOS association. They question actors, organizations and public authorities in the health and social action sectors using a multidisciplinary approach to better understand their dynamics. In 2021, after the brand new Center for Innovation in Partnership with Patients and the Public (CI3P) of the Faculty of Medicine of Côte d’Azur University (Flora et al. 2020) proposed two communications at the previous conference2, the 2021 conference pursues the ambition of questioning innovation by partnering with the CI3P, an innovation center co-directed by a doctor–patient tandem, through the perspective of the experience of stakeholders: new perspectives on health innovation.

According to the book Terminologie de la pratique collaborative et du partenariat patient en santé et services sociaux (Direction collaboration et partenariat patient (DCPP-CIO, UdeM 2016)), the patient experience is defined as:

The overall knowledge drawn from situations experienced living with the disease which have an impact on the patient, as much on their ways of taking care of themselves, of interacting with those involved, as on their way of using health services and social services (Ibid., p. 17).

The place and role of the people concerned (patients, people with disabilities and caregivers) in their relationship to the experience of living with illness or a disability situation have attracted the interest of the human and social sciences since the 1950s, in particular with regard to the first works focusing on relationships between health professionals and patients in order to explain care trajectories and the organizational and managerial structuring allowing for the delivery of care (Strauss 1992). Anthropology (Laplantine 1986) has also been concerned with the way in which patients experience their illness by emphasizing the social and cultural elements, which permeate their experience of their illness and their recovery. It was firstly with the emergence of pathologies such as AIDS (Epstein 1996) in the third sector health environment and the perspective of community health, for example, that the experience was questioned in its collective dynamics. This was, however, a societal movement, which was made broader with the birth of popular epidemiology in the 1970s, through population reactions to attacks on health due to local pollution in the USA, and which has since spread across the planet as populations gradually sense or perceive risks to their health, which are factors of public health problems (Brown 1987, 1997).

To better understand what has become a social fact in the 20th century, the following have appeared or been recovered (Flora 2012; Flora et al. 2014; Jouet 2014) in the sense given to them by the father of sociology Emile Durkheim (1894), concepts such as empowerment or recovery and capability (Le Gales and Bungener 2015), coming from the field of North American psychiatry and taken up by French researchers (Greacen and Cadeau 2012) which now irrigate the work on experience (Troisoeufs 2020). Other concepts come from the political sciences and evoke the question of citizen participation. Multiple user participation and professionalization initiatives exist, such as the Montreal model (Vanier et al. 2014; Pomey et al. 2015), the expert patient program in England (Rogers et al. 2008) or the model of narrative medicine (Charon 2015).

Many terms have come to enrich the roles that patients can endorse in the health system: the expert user (Jouet et al. 2010); the trainer-patient (Flora 2010); the resource-patient developed by the French Association of Hemophiliacs since the beginning of the century3; the researcher-patient (Godrie 2017); the health mediator-peer (Roelandt et al. 2016); the expert-patient (Tourette-Turgis 2015); the teacher-patient (Gross and Gagnayre 2017); the partner-patient (Pomey et al. 2015); and the tracer-patient (HAS 2014).

At the international level, multiple initiatives for the participation and professionalization of patients, relatives and health users have existed for several years. For example, in France, experiences of peer health mediators supported by the WHO can be identified (see the report from the World Health Organization Collaborating Center (WHOCC) (Roelandt et al. 2015)). More broadly, we finally talk about the professionalization of patients/users to configure participatory health systems.

This trend, the social fact of recognizing patients’ knowledge, is thus carried by patients and relayed by international (Consortium APPS 2020) and national (HAS 2020) agencies as well as by major Evidence Based Medicine journals (EBM) (Richards et al. 2013). These different models are based on a renewed partnership between patients and professionals. The latter are challenged on two counts: a) because their practices are questioned by what patients, beneficiaries and citizens tell them; b) as well as because the experience of professionals counts just as much and their lived experience of their work needs to be integrated into innovation approaches.

Thus, the chapters issued from the 2021 conference consider the experience of patients, relatives and/or segments of the population just as much as the experience of professionals to address the question of innovation in health. This perspective thus adopts the point of view of the organization or its representatives and would be the primary cause of the power to act.

As a result, it is possible through the insights offered throughout the chapters to apprehend and understand how experience is now reinvested when each of the parties is interested in innovation approaches and in the capacity of health organizations and the health system to innovate in partnership with patients, relatives and citizens. The relationship appears a priori to be virtuous: taking into account the lived experience of the people concerned (patients, beneficiaries, caregivers, professionals, volunteers, citizens, etc.) so as to imagine, design and deploy interventions, organizations or services that are more appropriate and appropriable by these actors. The recognition of experience, and of citizen participation in the creation and deployment of public policies, raises complex questions, some of which the chapters proposed in this work shed light on.

References

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