doi:10.1684/nrp.2021.0649
Rev Neuropsychol
2020 ; 12 (S1) : 108-13
Polyphonies about the challenges
of a partnership with patients in times of COVID-19 *
Polyphonies sur les enjeux
du partenariat patient au temps du Covid-19
Sylvane Faure1, Arnaud Halloy1, Brigitte Karcher1, Luigi Flora2, Graziella Colazzo1, Adriaan Barbaroux1,3, Éric Balez2, Christine Bonardi1
1Université Côte d’Azur, LAPCOS, France
<sylvane.faure@univ-cotedazur.fr>
2Université Côte d’Azur, Rétines, CI3P, France
3Université Côte d’Azur, Rétines, DERMG, France
To cite this article: Faure S, Halloy A, Karcher B, Flora L, Colazzo G, Bar- baroux A, Balez É, Bonardi C. Poly- phonies about the challenges of a part- nership with patients in times of COVID- 19.Rev Neuropsychol2020;12(S1):108-13 doi:10.1684/nrp.2021.0649
T
he CHERPA1 group proposes a reflection on the importance of experiential knowledge (mainly from patients, but also from researchers and clinicians in times of crisis) and patient-as-partner approach in our abil- ity to understand the effects of the COVID-19 pandemic and lockdown, in order to increase resilience in the face of stress related to the health crisis, and even to prevent future pandemics’ deleterious consequences on individual and collective health.Patient-as-partner approach and experiential health knowledge
Patient partnership refers to a care approach based on the involvement of patients in the debates and decisions that
∗This article is an English language translation of the following article:
Faure S, Halloy A, Karcher B, Flora L, Colazzo G, Barbaroux A, Balez E, Bonardi C. Polyphonies sur les enjeux du partenariat patient au temps du Covid-19. Rev Neuropsychol2020 ; 12 (2) : 232-7.
doi:10.1684/nrp.2020.0580.
Correspondence:
S. Faure
1CHERPA, for “CHERcheurs & PAtients” (researchers & patients), is a multidisciplinary research group within the Health axis of the Labo- ratory of Clinical, Cognitive and Social Anthropology and Psychology (LAPCOS).
1Members: Eric Balez (expert patient), Adriaan Barbaroux (medicine and social psychology), Christine Bonardi (social psychology), Gra- ziella Colazzo (neuropsychology), Sylvane Faure (neuropsychology);
Luigi Flora (education sciences, patient researcher), Arnaud Halloy (anthropology), Brigitte Karcher (clinical psychology).
1Address: Groupe CHERPA, Laboratoire d’Anthropologie et de Psychologie Cliniques, Cognitives et Sociales (LAPCOS, UPR 7278, MSHS-Sud Est, Université Côte d’Azur), Pôle universitaire Saint Jean d’Angély, 24 avenue des Diables Bleus, 06357 Nice Cedex 4, France.
affect them. The patient partner is “a person progressively empowered, over the course of his/her health care journey, to make free and informed health choices” (for terminology, see the Centre of Excellence on Partnership with Patient and the Public – CEPPP: https://ceppp.ca/). Human and social science literature currently testify to such knowledge and skill. What is referred to as the “experiential knowledge of patients” is not intended to replace medical knowledge but to complement it. Indeed, physicians have expert knowl- edge about the disease, but they have no experience of living with the disease. Patient-as partners have an impor- tant contribution to bring in those disease-related decisions in which they have expertise.
Patient-as-partners are also increasingly involved in health care decision-making, in order to develop adapted care solutions, to collaborate in research and in the train- ing of health care professionals[1]. First, this involvement enables highlighting and integrating data that only the patient partner can provide, namely knowledge and skills related to living with the disease: “experiential knowledge”.
Secondly, patient perspective could open up new research topics, which academic scientists have not neces- sarily envisaged: alternative therapeutic approaches could (or should?) be considered, from a plural perspective, including not only that of the physiology of the disease, but also its social, cognitive, emotional, psychological and even spiritual dimensions.
At the intersection of several disciplines, CHERPA was created with the aim of studying experiential knowledge in health, as well as developing a research programme with expert patients (currently on the subject of pain in collabo- ration with the INOVPAIN University Hospital Federation) in order to highlight certain mechanisms that can only be understood by taking into account the complexity of the experience of the subject confronted with a disease, pain or chronic disability. The aim is to develop knowledge for
theoretical proposals on disease and health, as well as for improvements in assessment and care.
These “polyphonies” therefore attempt to collect together the different perspectives and methods both in terms of the different disciplines involved and the paths leading to becoming a researcher. CHERPA indeed brings together several areas of expertise.
– Anthropology makes it possible to account for what the disability, pain or chronic disease modifies in patients’ daily life, as well as the strategies, solutions and/or adaptations they implement to deal with it. It is particularly suited to shedding light on the processes of collective construction of meaning and remediation measures (rituals, care systems, etc.) mobilised within a given population that has to respond to affliction and misfortune.
– Social psychology of health provides a qualitative and quantitative approach and analyses social representations, beliefs and behaviours related to pathologies, aiming to improve treatment compliance by experimental protocols.
– Psychodynamic orientation psychology allows the sub- jective reality of the disease to be understood and provides an awareness of the processes involved in the care for patients and the psychologist-researchers. The clinical sit- uation sketches how this disease can be experienced, and how the individual’s position in a given social and political context can generate psychological suffering.
– Neuropsychology, the hinge science between behaviour, cognition and the functional anatomy of the nervous sys- tem, contributes to the team’s interdisciplinary approach by assessing and understanding patients’ cognitive difficul- ties, and their impact on the management of disease-related adjustments. It also aims to integrate cultural aspects of mental processes. In chronic pain, we are interested in different capacities, such as self-regulatory functions (how patients think and control their emotions and behaviour), as well as in the personality of the patient as a subject.
The cause-and-effect dynamic is seen as bi-directional: pain generates frustration, anxiety and depression, but negative emotions can also exacerbate it (research data has begun to identify the networks that underpin these processes, involv- ing the amygdala, anterior cingulate cortex and insula).
Cognitive difficulties find legitimacy and interpretation in neuropsychological evaluation: chronic pain affects cogni- tive functions in a diffuse and continuous way, creating a
‘background noise’ that limits attention and flexibility,i.e.
the ability to find the most adaptive response. Collabora- tion with the patient partner makes it possible to refine the search for investigative and therapeutic tools that can tar- get the cognitive underpinnings of protective or resilience factors (e.g.cognitive control).
The team promotes the elicitation interview approach [2] to help patients provide a detailed description of their disease experience. The elicitation interview can bring to light the knowledge, sensations and feelings involved in the identification of prodromes which could make it possible to predict the occurrence of an epileptic seizure, a painful episode, etc.
The COVID-19 pandemic and the patient partnership
Journalist Pascale Santi writes in “Coronavirus: health users’ associations, forgotten in crisis management” (Le Monde, 04/05/2020: author’s translation): “It is beyond rea- sonable doubt that health users’ associations are the most striking forgotten element in the debate on COVID-19”. This is a significant challenge for France, which has the neces- sary structures for the development of patient partnerships, such as patient associations and health representatives. . . But it seems that France has forgotten to mobilise them in the context of the health crisis. This is not the place for a debate on the political reasons for this choice, but rather to use this observation as a starting point in order to: high- light the potential benefits of the patient partnership,even in times of crisis; draw attention to any patient partnership initiatives in operation during the containment period; high- light the deleterious effects of the lack of partnership that can be feared in the coming months.
As Alexandre Berkesse, Scientific and Strategic Advisor of the CEPPP at the Université de Montréal, points out (cf.
his webinarFaire Philo – Health Ethics and Democracyof May 12, 2020), in a health crisis, it is not only a matter of acting quickly, but also of acting in a relevant manner. This requires the involvement of patients in decisions that affect them. Why is their involvement so essential?
First of all, to identify and meet their (real) needs, and to avoid making assumptions about what is good for them. Some preliminary surveys on COVID-19 initiated by patient associations or their internal publications (newslet- ters, blogs...) show that patients put a primacy on the
“non-medical” and on solutions for better care and care organisations improving their daily lives. Translating these concerns into research terms seems to us to be a central issue.
The patient partnership is built on shared decision mak- ing rather than the imposition of rules and standards. Better understood, these would be seen as less arbitrary and there- fore better accepted. There is mutual misunderstanding between physicians, scientists, politicians and patients and the different groups have different agendas. Consulting and deciding together in urgent and delicate situations, such as the prioritising of patients in the event of a shortage of criti- cal care beds, enables an understanding of the criteria and constraints governing the choices made by others, and con- sequently a better acceptance and implementation of these choices.
Some patients, particularly those suffering from chronic, rare or serious illnesses in terms of medical and social care, acquire knowledge of the health care system that can be shared with their peers. Their care pathways between different professionals and between medical and social institutions, as well as their possible associative activity, give them a systemic familiarity with a health system whose organisation in silos makes it particularly difficult to grasp
and also to share experiences and knowledge. Indeed, one of the barriers to the development of a large-scale patient partnership highlighted by the crisis lies in the existence of self-centred environments that evolve side by side (public and private organisations, hospital and outpatient organ- isations, complex hierarchical structures and increasing specialisation within medical structures, disciplinary silos, etc.) and which largely ignore each other.
The case of a hospital caregiver seems emblematic here:
working in a department of a university hospital at the begin- ning of the lockdown period, she has been confined to her office by her superiors while waiting for clarification as to the interventions for each person. Her assignment brings to her shame and guilt about being applauded every night, seeing her children being kept away from her, and feel- ing professionally useless. She dares to confide in someone over the phone but says she is unable to talk about it in the presence of the occupational psychologist. Then, her physician, suspecting that she was infected with COVID- 19, decrees she should take sick leave, which she finds hard to hear and which doubles her shame and guilt. It is not so much the person’s physical symptoms or risk anxiety but her absence from the workplace that motivate her feeling. She then decides to come back to work, and thinks that in doing so, she may have infected two colleagues. This choice and this experience have an individual and public resonance because what is at stake at any given moment in an individ- ual level also makes it possible to perceive the complexity of mass behaviour in the context of a pandemic.
In this context, the patient is one of the rare actors who can, through his/her medical pathways or involvement in different ways of achieving a better life with the dis- ease, make links and create bridges between these worlds.
Indeed, through their experiential knowledge of the disease, they provide access, among other things, to the unconscious psychic mechanisms that hinder their observance of rules and restrictions or unknowingly lead to a negative therapeu- tic reaction. Awareness of these mechanisms thus enables health professionals to facilitate and better organise care.
The prior experience of chronic patients with the disease permits personalised support as well as the implementa- tion of preventive measures better adapted to certain risk groups, such as certain immunocompromised patients or those facing social isolation. Another asset that this long experience confers to patients is a better management of possible responses to uncertainty. The mobilisation of such patients, but also, in the context of the COVID-19 epidemic, of people who have themselves, or accompanying relatives, gone through the disease, can prove to be of valuable help in accompanying others in the daily management of their life with the disease (care, shopping, isolation, etc.). The experience of multiple hospitalisations, and/or a “COVID”
hospitalisation can also be a resource for improving care and/or a hospital stay.
Involving patients in resource allocation decisions would certainly havent drawn attention to the need for better support for all “non-COVID” patients requiring
follow-up and care during the crisis. While the develop- ment of telemedicine has made it possible to absorb some of this demand, many chronic patients seem to have pre- ferred to remain on the side-lines, for example, preferring not to “bother” their physician, while others have had to cope with a scarcity of drugs (such as certain immuno- depressants) used primarily for “COVID” patients, with the possible consequences of these shortages or inadequacies in care, or even a deterioration in their state of health.
Finally, more organisational action can also be carried out by patients’ associations, some of which have long experience of institutional care for health users. The asso- ciations are also in the front line in providing support, advice, guidance, listening (...) but also training and thera- peutic education for people with disabilities, chronic and/or rare diseases. They are therefore actors eminently suited to developing a partnership in that care and its manage- ment. Unfortunately, as we have seen, the government has largely missed this opportunity, which has not prevented some citizens’ actions from seeing the light of day.
Indeed, the ability of patients to organise and adapt to the complex and uncertain human situation imposed by the pandemic can be observed in many places. In Nice, for example, to support its members suffering from COVID-19, a self-help group of drug users organised a daily videocon- ference (based on the experience of members who had undergone phases of immunosuppression, and therefore periods of lockdown, while facing uncertainty about death or the diagnosis of a serious or lethal prognosis)[3]. Fre- quently, this type of initiative in times of crisis is based on forms of partnership already implemented upstream of cri- sis management. Sometimes, however, the COVID-19 crisis serves as a steppingstone for new or little-used forms of partnership.
In addition to the usual ways self-help groups function and their adaptation to the health crisis, some initiatives such as the development of online therapeutic patient education (e-ETP) by the Association Franc¸ois Aupetit are currently of particular interest to a significant number of health care institutions which, until now, were unaware of, or had not chosen to invest in, this approach[4]. Are we dealing here with an emerging culture of care partnership with the patient supported by information and communi- cation technologies or just one service among others? Time will tell. Whatever the answer, however, patients today are likely to be mobilised, and it would be counterproductive to deprive us of their contribution.
Several deleterious consequences of a lack of dialogue and involvement of patients and patient associations in times of crisis can indeed be envisaged. One of them is a breach of trust, or even a certain defiance accompanied by a feeling of exclusion with regard to political, medi- cal and/or scientific authorities. As we have seen, spaces for dialogue –e.g. on the continuity of routine care, the shortage of equipment, being prevented from accompa- nying the dead to their final resting place –, deliberation and shared decision-making involving patients and patients’
associations were cruelly lacking in the management of the crisis in France. The sense of illegitimacy of many chronic patients to continue their current care raises worries of increasing inequality in the access to care. Fear of the virus, of course, but most certainly also empathy for those affected by it, has led many to put their care on hold or rel- egate it to the background. The management of “COVID”
patients has been considered to be a priority, with the poten- tial consequence of a post-lockdown wave of non-COVID patients whose health worsened during the preceding months.
What are the solutions to psychological suffering and to the consequent break of chronic pathologies? Thaler and Sunstein propose thenudge as an effective and inex- pensive method that transforms the architecture of choice and changes individuals’ behaviour, without denying them any options or changing their motivation. The approach is favourable for the construction of a patient partnership in times of crisis, provided that its principle is the joint orientation of the patient and the practitioner in a path chosen together, taking advantage of the biases and heuris- tics that govern our choices instead of allowing ourselves to be influenced by them [5]. For example, in this epi- demic period, many patients are no longer engaged in physical activity and don’t ask for medical help for weight gain or anxiety disorders: in partnership with those who wish to do so, implementing intentions can increase activ- ity, and a nudge can improve access to care in periods of lockdown. COVIQUEST (a project launched by the Tours University Hospital), for example, invites general practi- tioners to contact their patients to offer a teleconsultation.
Finally, to be effective, the nudge must be adapted to the needs of the population. The exploitation of biases and heuristics thus has its place in handling the chal- lenges related to COVID-19, provided that we work in partnerships – for the effectiveness of the nudge but also its social and ethical acceptability – to make it a collaborative practice.
What about the patient partnership in the field covered by the Journal – neuropsychology and cognitive and clinical neurosciences?
Patient partnership, experiential knowledge and neuropsychology
Achievements of the patient partnership are difficult to pinpoint, probably because this partnership refers to many types of roles and multiple terms, but also per- haps because it is still emerging, with the exception of the field of neuropsychotherapeutic education. Partner- ships in support and training are indeed very engaged in the development, implementation and evaluation of care for patients living with, for example, multiple sclerosis, Parkinson’s disease, the sequelae of a head trauma or a stroke. Holistic neuropsychological rehabilitation has been
providing a framework for developing patients’ involve- ment for a long time. Cognitive rehabilitation in the context of comprehensive care of head injury patients [6] illus- trates the use of the patient partnership in several aspects.
These patients almost systematically suffer from after-effects that affect the cognitive (e.g.memory, executive functions), behavioural, emotional, psychopathological, relational and physical dimensions. Caring for these “multifactorial impair- ments” involves a holistic, person-centred, multi-modal approach to ultimately achieve a satisfactory quality of life.
A multidisciplinary research group and partnership between researchers and patient partners are therefore necessary.
However, we did not find any mention of research partnerships, in the restricted sense. Catherine Thomas- Antérion[7]addresses in her synthesis on the “single case study in neuropsychology” several questions concerning experiential knowledge – of the patient, the clinical neu- ropsychologist and the researcher – as well as partnership, underlining the interest of a “collaborative link between the scientist and the patient” in a case study. In addition to the importance of controversy “as the best bulwark against totalitarianism and scientism”, clinical teaching and meet- ings between clinicians and researchers, she concludes that
“patients whose stories fuel single case studies must partici- pate more actively in studies”. The ethical issues inherent in this research partnership, from the points of view of patients, researchers, managers, etc., must be handled by committees involving all the stakeholders.
Let us return to the current crisis and its unprecedented challenges. Both clinical experience and prospective stud- ies have established that survivors of severe forms of COVID have deficits in memory and executive functioning in some cases, with possible confusion in older people (for review, [8]). These disturbances are considered to be directly related to the impact of the virus on the central nervous system or indirectly, via the effects of hypoxemia. Either way, we know that they may limit general functional capacity even after the time of the disease. With regard to COVID in children, researchers are warning of the possible delete- rious consequences on neuropsychological development:
as a result, neuropsychologists need information on the impact of a coronavirus infection on a child’s brain and tools to uncover its physical, cognitive and psychosocial effects.
All in all, the publications highlight the need for systematic clinical screening of patients’ memory and exec- utive functioning, and even, for the child population, for preparatory anticipation, given the possible repercussions on neuropsychological development and therefore on the long term.
These knowledge and questioning, which have been built up during lockdown and in an emergency situation, already consider neuropsychology as essential for devel- oping the integrative systems – for prevention and care, but also for information and training of personnel and the public – required by the pandemic and its consequences on cognitive health and psychological well-being. From
our point of view, the magnitude of the challenges requires the involvement of all the stakeholders, including patients- as-partners, in the various forms of partnership already mentioned. But also, citizen intervention.
A major and urgent innovation:
participation
The mobilisation of patients in care pathways can be traced back to the first half of the 20th century with the constitution, in the United States, of self-help groups such as Alcoholics Anonymous or the anti-psychiatry movement in the 1950s. Built on peer support, these groups have since multiplied and diversified to include groups dealing with addictions, eating or sexual disorders, etc. Since the AIDS epidemic in the 1980s, there has also been a blossoming of patient associations focused on the production and dis- semination of knowledge about the disease and life with the disease [1]. Why, then, talk about “major innovation”
regarding the patient partnership? And why do we consider this to be a matter of urgency?
The authors ofLet the patient revolution begin[9]invite their readership, mainly other physicians, to give serious consideration to patient partnership, in order to improve management and the health care system. The title is explicit about the intent to give patients the role of a full partner in decisions affecting them. At the same time, it also highlights the slow percolation of the Patient Partnership into the med- ical world, which began more than half a century ago. This constitutes a revolution, of course, but one that still requires constant vigilance and permanent rebalancing in the rela- tionship between patients and physicians. For patients, this change involves the development of empowerment and bet- ter recognition of their knowledge by the medical world.
In other words, patient-as-partners call for taking a step to the side from disease-centred (pathogenesis) approaches to embrace an approach more in line with the WHO defini- tion of health, which also encompasses mental and social well-being.
Studying the processes involved in the disease (onset, course, maintenance), pathogenesis considers the causal intervention of the physical, psychological and environ- mental dimensions. Although still percolated with the ideology of the biomedical model of health, there has been an evolution towards more open professional practices and a better consideration of patients’ personal and situational problems. Of sociological origin, salutogenesis is in line with the bio-psycho-social model, based on the idea of a health-disease continuum and studies both “failures” of the self in the face of disease (body, cognitions, emotions, etc.) and health-promoting factors. It shares certain inclusive positions with positive psychology, notably on the fact that the individual, even when suffering, always has personal, social and/or situational resources as well as an adaptable capacity to use them.
In France, the prevalence of disease-centred approaches still hinders the inclusion of patient partner expertise.
In terms of psychosocial analytical logic, the difficulty comes from the weight and influence of classical medical conceptions at different levels of collective life. Hence, the cognitive and ideological constructs specific to liberal insti- tutions forge a common universe that regulates actions and social interactions and thus slows down the evolution of health practices: health skills and power belong to the med- ical and paramedical world, which still conveys the image of a passive patient more than a partner. But the political and economic choices made by health management decision- makers can also slow down the evolution of perspectives.
These policies have, moreover, amply demonstrated their limits during the COVID-19 crisis.
Even now, citizens are restrained by norms and their social role makes it difficult to envisage a partnership.
According to Rouquette[10], the social image of the “cit- izen actor” is one involving duties (voting, contributing, complying with regulations...) and responsibilities (famil- ial, professional ...); that of the “citizen thinker” is an image of social commitment, information and compliance with dominant models and practices; finally, the image of the
“citizen thought or represented” in the ambient model (media, specialists, decision-makers) is one of transmission of the models, collective and logical representations estab- lished in the field of health.
This guardianship hinders the participation of individ- uals in health care and health education practices. If the citizen patient is involved, it is often still only as a contribu- tion to its own care process, itself managed by professionals.
And it is also in this way that most people still see the human condition of illness.
Now, the patient partner is indeed this innovative indi- vidual who “inflects general determinisms, interprets them in her/his own way or in fact brings others into play (...), car- ries projects, (...) solves problems (...), also invents her/his ways of living”[10]. With regard to a collective and par- ticipatory involvement that could be called “citizenship in health”, the initiatives that are multiplying remain few: a minority. Yet we know the strong power of social influence of such minorities, which Serge Moscovici called “active”.
As bearers of innovation, these minorities are capable of rallying majorities if they keep their positions unchanged over a long period of time, accept their difference (or even deviation) and their inevitable conflicts with majorities.
More and more patient partners who are active in this way individually or through their associations[4] are in the process of developing this concept of citizenship towards the maximum involvement of all concerned, and its inclusion at all levels of health care approaches (psychoedu- cation, therapeutic education, training, team management, etc.). The development of the patient partnership and the recognition of experiential knowledge are shaking up our ways of thinking about care, but also about research, train- ing of professionals and health policies. It seems urgent to us to support this major innovation.
Acknowledgments
We would like to thank Bianca Marsden-Day and Silvia Volante for their invaluable help in translating the original text to English.
Conflict of interest None.
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