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Webinaire du Réseau-1 Québec : « COVID Longue, EM-SFC et Hippocrate: Une histoire de partenariat patient »

Le Réseau-1 Québec a le plaisir de vous inviter à son prochain webinaire :

COVID Longue, EM-SFC et Hippocrate: Une histoire de partenariat patient

Date : le vendredi 26 février 2021
Heure : 12 h à 13 Inscription : https://attendee.gotowebinar.com/register/227465179429426704

Conférencier :  Simon Décary, physiothérapeute et chercheur

Description : Le 28 février 2020 marquait le premier cas confirmé de COVID-19 au Québec. La première année sera synonyme d’hospitalisations et de décès, culminant avec la découverte exceptionnelle d’un vaccin efficace. Or l’emphase sur ces deux marqueurs pour organiser la réponse COVID au Québec a jusqu’à maintenant mis de côté les patients atteints de la COVID Longue, un terme crée par les patients pour décrire les symptômes persistants et handicapants liés à la COVID19. À l’échelle internationale, plusieurs patients atteints de la COVID Longue continuent d’en ressentir les impacts même après 9 à 12 mois — ceux-ci ont demandé à l’Organisation mondiale de la santé la reconnaissance, la recherche et la réadaptation. Dans cette présentation, nous allons décrire l’historique et l’état des connaissances scientifiques entourant la COVID Longue. Nous allons observer le lien inquiétant entre la COVID Longue et l’encéphalomyélite myalgique. Nous discuterons des messages cliniques clés à indiquer aux patients consultants en soins primaires. Finalement, nous analyserons les modèles de pratique émergeant à l’échelle internationale avec comme conclusion l’importance d’investir rapidement des ressources multidisciplinaires en soins primaires pour supporter ces patients dans leur processus de récupération.

Objectifs :

  1. Apprendre l’historique de l’émergence de la COVID Longue.
  2. Décrire les principaux symptômes persistants liés à la COVID Longue et établir les connaissances actuelles sur les trajectoires possibles de ces symptômes.
  3. Réfléchir au lien entre la COVID Longue et l’encéphalomyélite myalgique.
  4. Établir les principaux messages cliniques aux patients en soins primaires concernant la prise en charge de la COVID Longue.
  5. Décrire les modèles de pratique internationaux de la prise en charge de la COVID Longue et définir la place centrale des soins primaires dans l’organisation des services.


Audience cible : Ce webinaire s’adresse à tous les membres de Réseau-1 Québec, incluant les clinicien-ne-s/praticienne-s, chercheur-e-s, gestionnaires et décideur-euse-s, patient-e-s / proches aidant-e-s, résident-e-s et étudiant-e-s. 


Remarques : Vous pouvez participer au webinaire par internet ou par téléphone. Une fois inscrit, vous recevrez les détails de connexion. Pour celles et ceux qui ne peuvent y assister, un enregistrement du webinaire sera disponible sur notre chaîne YouTube quelques jours après la présentation.



Infodemic and pandemic: scientific evidence in a time of uncertainty

This essay is part of a series of reflections on primary care during the pandemic presented by Réseau-1 Québec. The original essay published in French on January 18, 2021 is available here >>

Pandemic – emergence of uncertainty

Early January 2020. A feeling of uncertainty emerged with the initial news of the infection. SARS-CoV-2? A new Acute Respiratory Syndrome? The conference calls started quickly. In Australia, China is nearby. On several dimensions: geographic, economic, social. Prior to the pandemic, China accounted for one-third of all exports and more than 45,000 international students at Australian universities.

An outbreak of respiratory syndromes in Wuhan quickly became a major concern in the Southern hemisphere. On February 1, our borders were closed to China and by mid-March also to Iran, Italy, and South Korea. By March 21, the borders were completely closed for what would turn out to be the majority of 2020, and they remain closed at the beginning of 2021. There is still no travel abroad for Australians unless they obtain a travel permit, and those are rare.

On March 22, as a core measure in the implementation of pandemic response structures, I was given the mandate to set up a critical intelligence unit to support our public policies and services for managing the SARS-CoV-2 pandemic. This decision was based on the realization that the decisions to be made over the next several months would require critical appraisal, by a team with sophisticated capacities for knowledge synthesis, data analysis, and mobilization of clinical expertise. On March 26, the COVID-19 Critical Intelligence Unit launched its activities [https://aci.health.nsw.gov.au/covid-19/critical-intelligence-unit].

Big evidence – volume, velocity, variety, and veracity

As with the concept of big data, the pandemic has generated what might be called big evidence. In terms of volume, more than 100,000 scientific articles (about 4% of the global scientific output for 2020) have been published [Else 2020]. In terms of velocity, more than 30,000 articles were published in pre-publication, many of them first on the newswires, and the intervals between studies and publication have shrunk, especially for articles about the pandemic. In terms of variety, the nature of the articles published has changed over the course of the pandemic, with articles on modeling and diagnosing dominating early on and those on public health interventions and mental health prevailing more recently. Science (and pseudoscience) has permeated social networks. Finally, in terms of veracity, scientific retractions have also been in the news, and numerous polarized opinions and conspiracy theories have emerged, while studies providing contextualized insights remain scarce. More recently, such conclusions relating to vaccine studies have also been the subject of debate.

This pace, cadence, and complexity created significant challenges for decision-making at both the clinical and public policy levels. The role of the unit we established was to conduct, in an unbiased manner, various rapid knowledge syntheses and to mobilize tacit knowledge that could support decision-making. We established a rapid synthesis team (whose reports were produced in under 24 hours early in the pandemic), an empirical data team (which produced a digital dashboard that was updated daily and various weekly reports), a clinical intelligence group (that included various academic clinicians), and a research intelligence group (that coordinated research activities in care and services and public health) [Levesque et al. 2020].

Fundamentally, the unit’s guiding principles are: transparency of information sources, sufficiency in extraction and analysis, triangulation of types of evidence, and transposition to the real-world context. In such a context, the unit’s products had to be fast (often produced in less than 24 hours), fairly exhaustive without being overly so, brief and clear, and focused on the evidence and not on the detail. A continuing challenge is to produce advisories that differentiate between the absence of evidence, evidence of the absence of evidence, evidence of evidence, and the transposition of evidence to address the questions formulated by decision-makers.

Uncertainty as a platform for change – clinical decision-making and public policy

In essence, the pandemic created a paradoxical situation for evidence-based decision-making. First, the scientific evidence was sparse at the beginning of the pandemic and many decisions had to be made in a context of uncertainty. Then, another type of uncertainty was created by the sheer size of the scientific corpus and the fact that the science was emerging at a rapid pace and soon produced a situation in which evidence was contradictory. The evidence changed over time and varied greatly from one context to another.

Because the pandemic is a dynamic phenomenon, with different countries being at different epidemic stages, and with pandemic control measures also varying between contexts, a range of contradictory results have emerged. For example, mask use appears to be effective in some places but not in others, epidemic curves suggest that factors of infection transmission are highly variable, and the indirect effects of the pandemic have not been experienced to the same extent everywhere. This is not to mention the variability in approaches adopted for clinical management of confirmed cases and other patients.

Another emerging paradox has to do with uncertainty and the impact of research on clinical and policy decisions. Even if the quality of scientific output is still tenuous in many respects, it does not take much to influence decision making. While strong systematic reviews usually have difficulty penetrating the clinical sector and the public health planning and policy-making arena in normal times, in this time of pandemic the appetite for evidence, however weak, has increased. Combined with good mechanisms for communication with various clinical groups, ranging from primary care to emergency care, community services, and clinical specialties, the reviews and syntheses produced during the pandemic have been translated rapidly into clinical and organizational practice guidelines, within days to weeks (see Communities of Practice website: https://aci.health.nsw.gov.au/covid-19/communities-of-practice).

Research and scientific dissemination in real time

The pandemic has not only influenced how research has been used in planning the response at the population or system level. It has also created a natural experiment environment in which research has been integrated into clinical care delivery and management of the population response. Multiple cohort studies have emerged, real-time research has been funded, and innovative data collection methods have created a variety of real-time living research laboratories. Primary care electronic medical records have become accessible via rapid retrieval systems to monitor the situation in near real time, using primary care as a sentinel.

The health care system has undergone rapid transformation, particularly with respect to the halting of elective procedures, a drastic reduction in discretionary demand for care, the use of information technology for remote care, and the reorganization of care processes and patient trajectories. In such a turbulent context, capturing the transformation by collecting experiential data has served to complement the more formal mechanisms of care and services research.

In terms of individual clinical care delivery, various electronic instruments have been implemented to capture and circulate information related to COVID-19 cases, creating an opportunity to study this cohort beyond ongoing clinical trials. Many clinicians have also had questions from their patients about the pandemic and have drawn on the daily work of the Critical Intelligence Unit to answer them, despite the uncertainty. Discussions about science and evidence, uncertainty, and debates around thorny issues have thus become more prominent in the clinical space.

Regarding decision-makers, supporting a response that is proportional to the risk and to the emergence of evidence has meant putting in place tools for communicating and disseminating scientific evidence. The need to integrate different forms of knowledge and discuss the strength of scientific evidence has become part of public policy-makers’ daily routine.

A new research paradigm?

The pandemic has created a distinctive environment for research and knowledge transfer that would be difficult to generate under normal circumstances. The sense of urgency, the emotion, and the complexity of the situation are, in themselves, unique. Still, we need to learn from this experience and influence how we fund, plan, and conduct research for the later phases of the pandemic and whatever comes next. Several researchers crossed the threshold between research and activism during the pandemic. Many researchers became pan-experts or omni-experts, invited to provide insights into many subjects that extended well beyond the boundaries of their research expertise. It is essential that we put in place sustained and rigorous mechanisms for carrying out such roles. Structuring research and scientific dissemination activities within the time horizons of both the clinician and the decision-maker is possible—the pandemic has thrust us into it!

Perhaps the issue is no longer simply “how to disseminate”, but also “how to do research in a real-world context.” Translating the opportunities created by the pandemic, a common enemy that has captured everyone’s attention for months, will not be easy when suddenly everyone—researchers, clinicians and decision-makers—will be refocusing their attention on a myriad of areas of interest. The notion of debate and of integrating knowledge to respond to complex issues is an avenue that our Critical Intelligence Unit is exploring for transposing a structure erected during an emergency into a permanent structure incorporating the same ingredients and methods in a peri-pandemic context. The challenge is before us. One year later, uncertainty is still omnipresent on several fronts.

Jean-Frédéric Levesque, MD, PhD, FRCP

CEO, Agency for Clinical Innovation, New South Wales, Australia
Adjunct professor, Centre for Primary Health Care and Equity, University of New South Wales

References

Else, H. How a torrent of COVID science changed research publishing — in seven charts. Nature 588, 553 (2020). https://www.nature.com/articles/d41586-020-03564-y

Levesque, J-F., Sutherland, K., Watson, D.E., Currow, D.C., Bolevich, Z., Koff, E. Learning Systems in Times of Crisis: the Covid-19 Critical Intelligence Unit in New South Wales, Australia. November 23, 2020. https://catalyst.nejm.org/doi/full/10.1056/CAT.20.0542



Un texte de réflexion de Jean-Frederic Levesque : Infodémique et pandémique: preuve scientifique en temps d’incertitude

Ce texte fait partie d’une série de réflexions sur la première ligne en contexte de pandémie du Réseau-1 Québec. An English version is available here.

Pandémie – émergence de l’incertitude

Début Janvier 2020. Un sentiment d’incertitude apparait aux premières nouvelles de l’infection. SARS-CoV-2? Un nouveau Syndrome Respiratoire Aigu? Les appels-conférences ont rapidement démarré. En Australie, la Chine, c’est tout près. Sur plusieurs dimensions : géographiques, économiques, sociales. Avant la pandémie, la Chine représentait le tiers de toutes les exportations et plus de 45 000 étudiants étrangers dans les Universités australiennes.

Une éclosion de syndromes respiratoires à Wuhan, c’est rapidement un gros problème en terres Australes. Le 1er février, nos frontières étaient fermées à la Chine et dès la mi-mars, également à l’Iran, l’Italie et la Corée du sud. Dès le 21 mars, les frontières étaient entièrement fermées pour ce qui allait s’avérer la majorité de 2020, et est toujours le cas en ce début de 2021. Il n’y a toujours aucun voyage a l’étranger pour les Australiens, à moins d’obtenir une autorisation de voyage, et elles sont rares.

Au cœur de la mise en place de structures de réponses à la pandémie, le 22 mars, le mandat m’était confié de mettre en place une unité d’intelligence critique pour soutenir nos politiques publiques et de services face à la pandémie de SARS-CoV-2. La réalisation que les décisions à prendre au cours des prochains mois nécessiteraient un regard critique, par une équipe mobilisant des capacités avancées de synthèses de connaissances, d’analyses de données et de mobilisation de l’expertise clinique était à la base de cette décision. Le 26 mars, la COVID-19 Critical Intelligence Unit démarrait ces activités [https://aci.health.nsw.gov.au/covid-19/critical-intelligence-unit].

Big evidence – volume, vélocité, variété et véracité

Tout comme le concept de Big data, la pandémie a généré ce que l’on peut appeler la Big evidence. En termes de volume, plus 100 000 articles scientifiques (environ 4% des extrants scientifiques globaux pour 2020) ont été publiés [Else 2020]. En termes de vélocité, plus de 30 000 articles ont été publiés en prépublication, plusieurs d’abord sur le fil de presse, et les délais entre les études et la publication ont fondu, particulièrement pour les articles portant sur la pandémie. En termes de variété, la nature des articles publiées a changé au fil de la pandémie, les articles de modélisation et sur le diagnostic dominant en début et ceux portant sur les interventions de santé publique et la santé mentale plus récemment. La science (et la pseudo-science) a envahi les réseaux sociaux. Finalement, en termes de véracité, les rétractions scientifiques ont également fait presse, l’émergence de multiples opinions polarises et théories de la conspiration se sont ajoutées à la rareté des études apportant un éclairage contextualisé. Plus récemment, de tels constats portant sur les études autour des vaccins font aussi l’objet de débats.

Un tel rythme, cadence et complexité ont généré des défis importants pour la prise de décision clinique et au niveau des politiques publiques. Le rôle de l’unité que nous avons établie était de réaliser diverses synthèses rapides de la connaissance et la mobilisation des savoirs tacites pour soutenir la décision, de manière indépendante. Nous avons mis en place une équipe de synthèses rapides (dont les travaux étaient produits en moins de 24 heures en début de pandémie), une équipe sur les données empiriques (produisant un tableau de bord digital mis à jour quotidiennement et divers rapports hebdomadaires), un groupe d’intelligence clinique (incluant divers cliniciens académiques) et un groupe d’intelligence en recherche (coordonnant les activités de recherche en soins et services et sante publique) [Levesque et al. 2020].

Fondamentalement, les principes directeurs de l’unité sont : transparence des sources d’information, suffisance dans l’extraction et l’analyse, triangulation des types d’évidence, et transposition en contexte réel. Dans un tel contexte, les produits de l’unité devaient être rapides (souvent produits en moins de 24 heures), assez exhaustifs sans l’être trop, brefs et clairs, apportant un éclairage sur la preuve et non sur le détail. Un des enjeux demeure de produire des avis qui différencient l’absence d’évidence, l’évidence d’absence de preuve, l’évidence de preuves, la transposition de la preuve pour répondre aux questions formulées par les décideurs.

Incertitude comme plateforme de changement – prise de décision clinique et politique publique

Fondamentalement, la pandémie a créé une situation paradoxale sur le plan de la prise de décision fondée sur la preuve. D’un côté, la démonstration scientifique était mince en début de pandémie et de multiples décisions ont dû être prises en contexte d’incertitude, puis l’ampleur du corpus scientifique, et le fait que la science émergeait à un rythme rapide et a rapidement créer une situation ou la preuve était contradictoire, créant un autre type d’incertitude. La preuve changeait dans le temps et variait grandement d’un contexte à l’autre.

La pandémie étant un phénomène dynamique, diverses nations étant à différents stades épidémiques et les mesures adoptées pour contrôler la pandémie étant aussi variables entre contextes, divers résultats contradictoires se sont mis à apparaitre. Par exemple, le port du masque semble efficace dans certains endroits mais pas dans d’autres, les courbes épidémiques suggèrent des facteurs de transmission de l’infection très variables, les effets indirects de la pandémie ne se retrouvent pas partout au même point. Sans compter la variabilité des approches adoptées dans la gestion clinique des cas confirmés et des autres patients.

Un autre paradoxe émergeant porte en soit sur l’incertitude et l’impact de la recherche sur les décisions cliniques et de politiques. Si d’une part la qualité de la démonstration scientifique demeure faible sur plusieurs points, il n’en faut pas beaucoup pour influencer la décision. Si des revues systématiques solides ont habituellement de la difficulté à percer le secteur clinique et l’arène des décisions liées à la planification et aux politiques de santé publique en temps normal, en temps de pandémie, l’appétit pour la preuve, si faible soit-elle, s’est accru. Combinées à de bons mécanismes de communication avec divers groupes cliniques, allant de la première ligne, les soins d’urgences, les services communautaires et les spécialités cliniques, les revues et synthèses effectuées durant la pandémie ont rapidement trouver application dans des guides de pratiques cliniques et organisationnelles dans l’espace de quelques jours à quelques semaines (voir site web des communautés de pratique [page web n’est plus disponible].

La recherche et la dissémination scientifique en temps réel

La pandémie n’a pas qu’influencé comment la recherche a été utilisé dans la planification de la réponse à l’échelle populationnelle ou à l’échelle du système. La pandémie a aussi créé un contexte d’expérience naturelle où la recherche s’est vue intégrée à la prestation clinique ainsi que dans la gestion de la réponse populationnelle. De multiples études de cohortes ont émergé, des recherches en temps réel ont été financées et des méthodes novatrices de collecte de données ont créé divers laboratoires de recherche vivants en temps réel. Les dossiers médicaux électroniques de première ligne sont devenus accessibles grâce aux systèmes d’extraction rapide pour pouvoir monitorer la situation en temps presque réel, en utilisant la première ligne comme sentinelle.

Le système de santé s’est transformé rapidement, particulièrement en ce qui a trait à l’arrêt des procédures électives, une réduction drastique de la demande discrétionnaire de soins, le recours aux technologies de l’information pour les soins à distances et la réorganisation des processus de soins et trajectoires des patients. Dans un tel contexte d’effervescence, capter la transformation par la collecte de données expérientielles est venue complémenter les mécanismes plus formels de recherche en soins et services.

À l’échelle de la prestation clinique individuelle, divers instruments électroniques ont été mis en place pour capter et circuler l’information relatives aux cas de COVID-19, créant une opportunité d’étudier cette cohorte, au-delà des essais cliniques en cours. Nombreux cliniciens ont aussi fait face aux questions de leurs patients concernant la pandémie, puisant dans les travaux quotidiens de l’unité d’intelligence critique pour y apporter réponse, malgré l’incertitude. Discuter de la science et la preuve, de l’incertitude et les débats sur des questions épineuses, à ainsi pris de l’importance dans l’espace clinique.

À l’échelle des décideurs, soutenir une réponse proportionnelle au risque et à l’émergence de la preuve, a nécessité de mettre en place des outils de communications et de diffusion de la preuve scientifique. Les besoins d’intégrer les diverses formes de connaissances et de discuter la force de la preuve scientifique sont devenus partis du quotidien de la décision sur les politiques publiques.

Un nouveau paradigme pour la recherche?

La pandémie a créé un contexte particulier pour la recherche et le transfert des connaissances qu’il serait difficile de générer en temps normal. Le sentiment d’urgence, l’émotion et la complexité de la situation sont en soi uniques. Néanmoins, il faut apprendre de cette expérience et influencer notre façon de financer, planifier et réaliser la recherche pour les phases ultérieures de la pandémie et ce qui adviendra ensuite. Plusieurs chercheurs ont traversé la frontière entre recherche et activisme durant la pandémie. Plusieurs chercheurs se sont transformés en pan-experts, en omni-experts, ayant un point de vue sur plusieurs thèmes qui dépassent nettement les frontières de leur compétence de chercheurs. Mettre en place des mécanismes permanent et rigoureux pour jouer ce rôle, est fondamental. Structurer la recherche et les activités de dissémination scientifique dans l’horizon temporel du clinicien et du décideur est possible, la pandémie nous y a poussé!

La question n’est peut-être plus essentiellement « comment disséminer» mais aussi « comment faire la recherche en contexte réel ». Transposer les opportunités crées par la pandémie, un ennemi commun qui a capté l’attention de tous depuis des mois, ne sera pas facile quand soudainement tout le monde recentrera son attention, chercheurs, cliniciens et décideurs inclus, sur une multitude de champs d’intérêt. La notion de débat et d’intégration des connaissances pour répondre aux questions complexes, est une avenue que notre unité d’intelligence critique explore, pour transposer une structure érigée en urgence, en une structure permanente combinant les mêmes ingrédients et méthodes, dans un contexte péri-pandémique. Le défi est devant nous. Un an plus tard, l’incertitude est encore omniprésente sur plusieurs fronts.

Jean-Frederic Levesque, MD, PhD, FRCP

Président directeur général, Agency for Clinical Innovation, New South Wales, Australie, Professeur adjoint, Centre for Primary Health Care and Equity, University of New South Wales

Références

Else, H. How a torrent of COVID science changed research publishing — in seven charts. Nature 588, 553 (2020). https://www.nature.com/articles/d41586-020-03564-y

Levesque, J-F., Sutherland, K., Watson, D.E., Currow, D.C., Bolevich, Z., Koff, E. Learning Systems in Times of Crisis: the Covid-19 Critical Intelligence Unit in New South Wales, Australia. November 23, 2020. https://catalyst.nejm.org/doi/full/10.1056/CAT.20.0542



An essay by Jean-Louis Denis, Nancy Côté, and Catherine Régis: Leadership in the context of a pandemic: What are the lessons for front-line care and services?

This essay is part of a series of reflections on primary care during the pandemic presented by Réseau-1 Québec. Original essay published in French on September 2, 2020 is available here >>

Since March, a major health crisis has disrupted the daily lives of Quebec citizens. For many, watching the regular press briefings by political leaders is essential to better understand the government’s orientations and their implications. The current pandemic offers a unique opportunity to learn about leadership in a crisis context, and to reflect on the role that primary care leaders can play as well as on the resources needed to deal with this crisis. Here we examine the lessons we can draw from this experience in preparation for future crises.

In this respect, primary care has a key role to play, but for it to be able to exercise its role fully, certain conditions are necessary.

Recent data published on the Santé-Montréal website reveal the existence of inequalities in relation to the pandemic, particularly between men and women and in racialized populations. It has long been known that health is not only a question of access to care and services; it is intimately linked to living conditions that provide more or less access to the economic, social, and cultural capital through which individuals can benefit from environmental resources (education, a social network, financial resources, etc.) that enable them to develop and be healthy. While public health can sound the alarm about the importance of addressing people’s living conditions, it must nevertheless be supported by a strong primary care network to be able to act on them. Primary care services are clearly only one part of the possible response, but they play an important role in mitigating health risks during a pandemic, particularly for certain segments of the population.

Let’s return to the matter of leadership. In extreme situations, leadership that is concentrated at the top will only run out of steam (Hannah et al., 2009) given the complexity of the issues and their unpredictability in times of a pandemic; the need for a diversity of levers and expertise to protect health is undeniable. The government or health system must be able to mobilize actors at lower levels of governance, such as the regional or community levels. This leadership also has to decisively transcend a series of boundaries between sectors, social groups, professions, and fields of knowledge (Ospina et al., 2020). These areas of intervention need both a diversified leadership that adapts to challenges as they arise, and evolves with the pandemic, and sufficient resources to intervene effectively. Primary care refers to a more comprehensive model that is not confined to a medicalized conception of service provision, though it may include it. That medicalized approach, being essentially oriented towards access to a family doctor or to an interprofessional team that is often limited and based on exclusively clinical expertise, is insufficient to carry out effective targeted interventions and to respond adequately to the needs of populations considered vulnerable (Ouimet et al., 2015; Levesque et al., 2012).

Moreover, the knowledge and expertise required to support the development of a primary care model that can respond adequately to the challenges presented by the pandemic are extensive. They span social epidemiology, sociology, anthropology, behavioural and organizational sciences, and economics, to name just a few. Public authorities must be willing to mobilize this knowledge, sensitively and at the right time, to support and equip local authorities, such as  primary care, the local service networks (RLS), and the community, in deploying their services and interventions. Collaboration between these different sectors is only possible if there is an integrative and diversified leadership that enables interventions to be thought out in their entirety (Crosby & Bryson, 2010).

This call for integrative and diversified leadership implies, first of all, giving greater scope to the leaders of health care institutions, whose role must not be limited to carrying out the directives of central government. Here we refer not only to senior management, but also to other stakeholders who exercise informal leadership, as well as to middle managers, who can provide the necessary relay between the strategic heads of organizations and the professionals and stakeholders directly involved in the delivery of care and services. It also involves creating more substantial bridges than currently exist between public health, health care system resources, and academic communities that could potentially engage in collaborative and innovative intervention approaches. This means, as well, that primary care would become a true experimental laboratory for reflection and action to promote population health.

Numerous initiatives have been implemented here and there by front-line, primary care managers and clinicians to adapt service provision to the crisis context and adequately support their teams. For example, in several family medicine groups (FMGs), the roles of professionals, such as clinical nurses, pharmacists, and administrative personnel, have been redefined to optimize their scope of practice and to foster more collaborative teamwork. Some middle managers have used technology to hold more frequent team meetings, which has allowed them to stay in close contact with their teams, be more responsive to difficulties encountered in the field, and be able to recalibrate quickly, as the crisis gave some of them more decision-making latitude. These few examples demonstrate enthusiasm and a willingness to act, but their impact will remain limited unless they are integrated into a more ambitious plan devoted to pursuing equity. This presupposes a willingness and an ability on the part of current political, administrative, and clinical leaders to collaborate with new actors, who are essential intermediaries not only in the development of communities and an enhanced primary care offer, but also in terms of ensuring more extensive knowledge mobilization. This willingness must also translate, in the long term, into sufficient resources to support a goal as ambitious as working to reduce health inequities in the context of a pandemic.

Jean-Louis Denis, Full professor and Canada Research Chair, School of Public Health, Université de Montréal

Nancy Côté, Assistant professor and FRQS research fellow, Department of Sociology, and VITAM Centre researcher, Université Laval

Catherine Régis, Full professor and Canada Research Chair, Faculty of Law, Université de Montréal. Professors Denis and Régis are co-founders of Hub santé – politique, organisations et droit (H-POD)

References:

Crosby, B. C., & Bryson, J. M. (2010). Integrative leadership and the creation and maintenance of cross-sector collaborations. The Leadership Quarterly, 21(2), 211-230.

Ford-Gilboe, M., Wathen, C. N., Varcoe, C., Herbert, C., Jackson, B. E., Lavoie, J. G., … & Wong, S. T. (2018). How equity‐oriented health care affects health: Key mechanisms and implications for primary health care practice and policy. The Milbank Quarterly, 96(4), 635-671.

Hannah, S. T., Uhl-Bein, M., Avolio, B. J. & Cavarretta, F. (2009). A framework for examining leadership in extreme contexts. The Leadership Quarterly, 20(6): 897-919.

Levesque, J. F., Pineault, R., Hamel, M., Roberge, D., Kapetanakis, C., Simard, B., & Prud’homme, A. (2012). Emerging organisational models of primary healthcare and unmet needs for care: Insights from a population-based survey in Quebec province. BMC Family Practice, 13(1), 66.

Ospina, S. M., Foldy, E. G., Faurhurst, G. T. & Jackson, B. (2020). Collective dimensions of leadership: Connecting theory and method. Human Relations, 73(4), 441-463.

Ouimet, M. J., Pineault, R., Prud’homme, A., Provost, S., Fournier, M., & Levesque, J. F. (2015). The impact of primary healthcare reform on equity of utilization of services in the province of Quebec: A 2003–2010 follow-up. International Journal for Equity in Health, 14(1), 139.



An essay by Jean Rochon: The health of primary care after the pandemic

This essay is part of a series of reflections on primary care during the pandemic presented by Réseau-1 Québec. The original essay published in French on May 11, 2020 is available here >>

Crises reveal both strengths and weaknesses. The French philosopher and sociologist Edgar Morin summarized the consequences clearly: “A crisis generates three different scenarios, but only the third should be encouraged: the desire to return to the world as it was, an escape into anything at all, and the emergence of new learning.”

It is crucial that we seize this opportunity, as another much more insidious and devastating crisis is unfolding because of the burden of chronic conditions and social inequalities in health. These also pose a threat to the economy and to social peace.

The crisis provoked by the COVID-19 pandemic has reminded us that complex situations require solutions validated by facts and science. It has also shown us the importance of having a broader conception of primary care, or the front line, in order to contain the emerging crisis.

Evolution of the front line

Fifty years ago, when the health and social services system was created, primary care was supposed to consist of family physicians and local health service centres (CLSCs), which would be the entry point to multidisciplinary team services for the treatment of individuals’ health problems, referral to specialized services when required, and a coordinated overall response to individuals’ needs. The rapid aging of the population and the rise in chronic conditions prompted the development of other services such as home care, adapted housing, and long-term care.

Over the following decades, the development of knowledge on the determinants of health demonstrated that three-quarters of a population’s health problems are influenced by environmental conditions, the quality of living environments, and healthy lifestyles. Research has shown that resulting chronic conditions can be prevented through a population-based approach that emphasizes disease prevention and health promotion through coordinated and integrated interventions. We now know that massive and sustained interventions starting in the first years of life, and timely responses to problems as they arise, can improve the life course of individuals and the health of the population.

Primary care can no longer be managed as simply the base level of a system whose resources are primarily invested in hospitals that provide specialized and superspecialized services. It needs to be conceptualized as a system in itself, serving a population in a given territory. This system is responsible for implementing government policies and programs at the local and regional levels by coordinating comprehensive and continuous services. The range of primary care services includes prevention and health promotion interventions within the provincial public health program, general health services, social services, community pharmacies, home care services, support for informal caregivers, housing adapted to support mobility and autonomy, and long-term care. The primary care system should refer patients to specialized services while providing support and care management over the medium and long term.

A new front line

From this standpoint, the primary care system should be conceived of as a consortium of public, socio-economic, and community partners, as well as citizens engaged in the community. This system is based on stakeholders’ geographic proximity and shared dynamics rather than on administrative boundaries. The territory constitutes a locus of network interaction and interdependencies among partners. Boundaries can shift depending on the deployment of activities. The consortium’s governance must make it possible to move from a sectoral, top-down approach to one that is territorial and interactive. It is the foundation for decentralizing decision-making and implementation powers to the local and regional levels.

Coordinating the consortium implies recognizing the partners’ specific responsibilities and expertise and identifying common problems. Its aim must be to develop objectives and actions collectively, and to seek solutions to common problems through collaborative means. As such, it needs to support the pooling of ways and means, as well as new resource allocation. The coordination of services and interventions ensures a smooth and harmonious process. In the Quebec context, the CLSC appears to be the entity that is qualified to undertake this coordination.

Individually, partners remain responsible and accountable for the outcomes of their specific activities. Together, they must aim for a collective impact on the health and well-being of the territory’s population. To this end, they require:

  • A shared action plan with concerted actions;
  • A common evaluation framework that involves sharing information;
  • Complementarity in their activities;
  • Ongoing communication based on a relationship of trust among the partners and with the community;
  • A method and the means for monitoring and for data collection;
  • A competent and dedicated team.

Funding for the consortium and its partners should be multi-year, in three to five year cycles, to ensure sustainability. Financial and technical support should promote the development of workers’ competencies and foster innovation to ensure continuous adaptation and improvement in response to changing needs, opportunities, and outcomes.

Perspective 

The deployment of a primary care system as outlined above is a major undertaking, but several experiences in Quebec and elsewhere have established foundations on which we could build. It would be risky to focus only on a few isolated parts of the consortium concept, such as family medicine groups (FMGs) or seniors’ residences. As with a chain, the system will only be as strong as its weakest link.

Another concern is the competition for available resources that can be expected after the crisis, including the risk of austerity policies due to short-term pressures. Yet investing in health promotion, disease prevention, and front-line services will have a significant positive economic impact in the medium to long term. However, we have both the means and the capacity to pursue a sustainable development path to meet the needs of the population today and to protect the future for generations to come.

This will require foresight and political will.

Jean Rochon, Professor emeritus, Université Laval, former Minister of Health and Social Services of Québec (1994–1998)



An essay by the Young Leaders Committee: Supporting the next generation of researchers and rethinking tomorrow’s research in the context of research “covidification”

This essay is part of a series of reflections on primary care during the pandemic presented by Réseau-1 Québec. The original essay published in French on May 25, 2020 is available here >>

[This essay was written by the Young Leaders Committee in Patient-Oriented Research (POR), a community of early career researchers and student-researchers supporting the scientific community and its members, whose mission is to promote the next generation of POR leaders by supporting POR capacity building, networking and mentorship, scientific production, and POR knowledge translation, as well as collaboration among its members.]

The “covidification” of research

The COVID-19 pandemic has shone the collective spotlight on health research. The media report daily on scientific advances supporting the fight against COVID-19: epidemiological data, clinical trials of treatments, vaccine development, etc. Many members of the scientific community in Quebec, Canada, and internationally have mobilized to address the emerging issues of this COVID-19 crisis, to such an extent that we are witnessing a rapid “covidification” of research: major investments in research on COVID-19 (e.g. pharmaceutical, basic science, specialized medicine), the creation of networks and platforms for sharing research on COVID-19, the suspension of several non-COVID-19 research activities, the cancellation or postponement of funding competitions for non-COVID-19 studies, and the reorientation of many research teams towards COVID-19.

This “covidification” of research reflects an intention to answer pressing questions in the fight against COVID-19, but it also poses certain risks. Of course, research on epidemiology, vaccines, and treatments for COVID-19 is essential. However, it is also crucial to address issues of health service organization, quality of care, health equity, and the social aspects of this crisis. We need to avoid an “over-covidification” of research; let’s not forget that the non-COVID issues still affect patients and many challenges in our health systems have been amplified by this health crisis. Moreover, neglected or postponed health care and the delays in management of patients’ health problems will bring new challenges.

The importance of patient-oriented research

In this context, patient-oriented research (POR) is once again critically important. The upheavals we are experiencing underscore the need to produce knowledge that addresses people’s concerns. POR can produce evidence on health care services and policies oriented towards improving the health and well-being of populations and health professionals. Yet POR, which involves a strong collaborative process, is on shaky ground. During the pandemic, we need to make sure patients, health professionals, and decision-makers can continue to participate safely, and significantly, in order to ensure the production of meaningful and relevant evidence. In our post-COVID society, it will be more important than ever to maintain strong links with patient-partners so that work currently on hold can resume and adapt to the emerging challenges facing patients and the health system.

What is POR?

Patient-oriented research (POR) mobilizes patients and multidisciplinary partners, focuses on priorities established by patients, and improves patient outcomes. POR aims to apply knowledge to improve health systems and health care.

Issues for the next generation of researchers

As early career researchers and student-researchers, this “covidification” of research has hit us head-on, and we are dealing with inevitable collateral effects (see our algorithm below). A loss of motivation and uncertainty about this situation have strained our capacity to be resilient and to adapt. Here are some examples of what we are experiencing: reduced job prospects and job insecurity in research; uncertain thesis defenses in formats that don’t do justice to the scope of the work and don’t allow for celebration commensurate with the effort; unreliable research funding due to the cancellation of various competitions; difficulties reconciling pro-COVID-19 research with our own research programs in a coherent manner; excessive project delays caused by the interruption of data collection; reduced ability to maintain links with patient-partners and other collaborators; the cancellation of networking events that are so valuable for our career advancement; a heavy workload generated by the move to online coursework; work–family balance issues related to working from home and the closure of schools and daycare centres; etc.

The next generation of researchers does not necessarily have the same resources and networks as experienced researchers to cope with these challenges. This situation contributes to a certain precariousness and can make research students and young researchers vulnerable.

Supporting the next generation of researchers

These upheavals contribute to weakening the next generation of researchers. Without additional support, there is a risk our generation of young researchers will crumble. Research supervisors, more experienced researchers, universities, research networks, and funding agencies all have a role to play in supporting the next generation of researchers, particularly in the current context.

It is crucial that student-researchers and early career researchers are afforded the support, flexibility, and understanding they need. Resources must be made available to us to carry out our work and plan our early career paths: more frequent follow-ups; formal and informal mentoring; support in reorienting our projects and data collection; setting priorities with regards to our objectives; flexibility in deadlines for grant and scholarship applications; consideration of work–family balance in scientific production; extension of grants and funding; etc. The creation of virtual spaces to facilitate collaboration, mutual aid, and networking can also strengthen a sense of belonging and reduce isolation. Innovative ways must be found to enable the next generation of researchers to attend training sessions, gain experience, demonstrate leadership, and engage in research. For example, the next generation can become involved in COVID-19 grant applications and projects if they are given opportunities by more experienced researchers or if their participation is encouraged by research networks and funding agencies. Granting agencies and universities could also be encouraged to show flexibility and support in maintaining and creating strategies to support the next generation of researchers in the short, medium, and long terms (e.g. competitions, funding, sponsorships, virtual events, mentoring, productivity support, career planning support).

An opportunity to rethink the research of tomorrow

As young POR researchers, we often experience discomfort and frustration with more traditional research structures and approaches that seem old-fashioned and partially out of step with the needs and realities of patients and health systems. We dream of research that is more agile, innovative, and interdisciplinary, conducted in collaboration with all holders of knowledge and experience (patients, clinicians, communities, managers, decision-makers, and researchers); research that is applied in real time to solve emerging problems, and where our performance as researchers is measured by the impact of our contributions and not just by the number of lines in our CVs. In short, “Research 3.0”, as Réseau-1 would describe it.

Amongst ourselves, we sometimes question our career choice: will research enable us to make a significant contribution to improving the health system and the well-being of populations? If the major research upheavals of recent months have proven one thing to us, it is that research can change, adapt to emerging needs, and be agile. This gives us renewed hope in research and its mission. Let’s take advantage of this crisis to rethink research, to innovate, and to make lasting changes that will maintain this agility and renewed relevance of research. We, the next generation of patient-oriented researchers, are ready to take on this challenge. Let’s not forget: we are not alone. We are part of a strong research community that is more important now than ever!

Mélanie Ann Smithman, Doctoral candidate, Université de Sherbrooke; Co-director, Capacity strengthening, Réseau-1 Québec; Fellow, Québec SPOR Support Unit

Isabelle Dufour, Nurse, Doctoral candidate, Université de Sherbrooke; Fellow, Québec SPOR Support Unit

Virginie Blanchette, Podiatrist, PhD; early-career professor, Université du Québec à Trois-Rivières; POR trainee

Jean-Christophe Bélisle-Pipon, PhD, Visiting researcher, The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School; Fellow, Health Law Institute, Dalhousie University; Invited researcher, School of Public Health, Université de Montréal; Fellow, Québec SPOR Support Unit

Samuel Turcotte, Occupational therapist; Doctoral candidate in clinical and biomedical sciences (rehabilitation option), Université Laval; Fellow, CIHR SPOR (transition to leadership stream) and Québec SPOR Support Unit

Mohamed Ali Ag Ahmed, MD-MPH, PhD; Postdoctoral fellow with the Research Chair on Chronic Diseases in Primary Care, Université de Sherbrooke

Ruth Ndjaboue, Postdoctoral trainee, Université Laval; Fellow, Diabetes Action Canada – a national patient-oriented research network

On behalf of the Young Leaders Committee in POR



Mobilisation des médecins de famille en recherche

Le R1Q a demandé à la SPOR Evidence Alliance de produire une revue systématique sur la mobilisation et l’engagement des médecins de famille à la recherche en soins de première ligne afin d’informer les quatre réseaux de recherche axée sur les pratiques de première ligne (RRAPPL).

Voici le rapport final ainsi que le sommaire en français, et un sommaire en anglais. Cette revue a permis aux RRAPPL de valider certaines de leurs pratiques. Nous travaillerons de près avec eux pour intégrer quelques autres recommandations issues du rapport.



Home care: More funding needed, but especially under a new model

This essay is part of a series of reflections on primary care during the pandemic presented by Réseau-1 Québec. The original essay published in French on May 19, 2020 is available here >>

The Covid-19 crisis, with its fatal impacts on vulnerable seniors, impels us to rethink our model of services in support of functional disabilities. The Canadian health care system and the Canada Health Act have put hospitals at the heart of the health response. While this orientation was warranted in the last century to meet the needs of a younger population, it is much less valid today as an older population faces chronic conditions and disabilities. In this essay, I will explain why institutionalisation and group housing became the preferred models in Canada. I will then show that home care is the appropriate approach for addressing the current and future needs of older adults facing a loss of autonomy. Finally, I will propose an efficient and more appropriate method of financing home care: autonomy insurance.

In Canada and Quebec, the proportion of older adults living in residences that provide care services is higher than in other industrialized countries. Long-term care accommodation rates are 5.7% and 5.9% for people aged 65 and over in Canada and Quebec, respectively, compared to the OECD average of 4.7% [1]. But it is in seniors’ residences (SRs), where more than 100,000 seniors live (7%), that Quebec stands out. More than half of all spots in SRs in Canada are in Quebec. Nearly 20% of people over age 75 in Quebec have chosen to live this collective lifestyle, which means that seniors are concentrated in a certain autarky and in a self-exclusionary way from other social groups [2]. These seniors of the so-called “silent” generation are looking for security and access to services, as needed. Their children, from the baby boom generation, have also seen SRs as a practical solution to ensure their parents’ support and security. While residences were struggling to fulfill their mandate prior to the crisis, it is now clear that in light of the Covid-19 outbreaks and the widespread containment measures that were imposed in these settings, this mandate is no more than an illusion.

The popularity of collective housing stems from the inability of society and the health care system to provide the home care services needed in the event of functional decline. The absence of adequate home care has put increased pressure on long-term care institutions (CHSLD), and a lucrative market of non-licensed private CHSLDs and seniors’ residences has developed in an anarchistic manner, with no state control. But the seniors of today and tomorrow would prefer to continue living at home, provided they can have access to sufficient and good-quality services in the event of any functional decline. This requires a change in how we view autonomy support services: rather than moving people to residences that meet their needs, it would be better to adapt and develop home care services that allow them to live where they have chosen to age.

Home care represents only 14% of public funding for long-term care in Quebec and Canada. All other OECD countries devote a larger share of their long-term care public funding to home care, even reaching as high as 73% in Denmark [3]. The low investment in home care here can be explained by the logic of our funding model; the Canadian health care system essentially covers medical and hospital care. This means that accommodation provided in long-term care institutions is covered by the public health insurance plan, whereas home care is funded at the margin, at the discretion of each province. As such, it is understandable that the institutional solution would take precedence.

But investing more in home care will not be enough to effect significant change. A longitudinal study looking at the services used by all Sherbrooke seniors from 2011 to 2015 showed a significant progressive decrease in home care services over this period: from 200,000 visits per year in 2011 to less than 60,000 in 2015. This decrease was particularly significant among people receiving a higher intensity of services. This phenomenon was all the more troubling given that the 2013–2014 budget included an additional investment of $110 million for home care, a 20% increase in the base budget. Clearly, this increase did not lead to improved services. Instead, institutions reallocated funds according to their priorities. At that time, CLSC home care services were managed under the same budget as hospital and residential services. So hospitals received these additional investments. It is easy to imagine that, with the 2015 reform in Quebec, which created large regional institutions including rehabilitation and youth services, the situation will not improve and that the recent investments in home care will not translate into additional services for home care users. For the management of the current superstructures, the temptation is too strong to reorganize revenue sharing to cover the rising costs of regular hospital care.

So, we need to move away from the current institution-based funding model. Rather, the new funding model for long-term care should be based on the needs of individuals. This is the principle of public long-term care insurance that has been implemented in many countries over the past 20 years, including in Japan, France, and most continental European countries [4]. In these insurance systems, the person’s needs are assessed using a disability measurement tool. An allocation is determined based on level of need. This allocation is used to pay for public or private services chosen by the person or their family in accordance with the intervention plan developed by a health professional, often a case manager. Some countries even allow a cheque to be issued directly to the person, who can then arrange for the needed services. Provider quality is ensured through a mechanism of accreditation, and service quality is evaluated by the case manager. These insurance plans are usually funded on a “pay-as-you-go” basis through employer–employee contributions, annuity tax, income tax, or other specific forms of revenue (such as electricity fees or the abolition of a statutory holiday).

This is what was proposed by the autonomy insurance plan in Quebec in 2013, when I was a minister in the government. In fact, Quebec has several elements already in place that would facilitate rapid implementation of this important reform: an assessment tool already widely used for all persons requiring home or residence-based services (the Multiclientele Assessment Tool [OEMC], which includes the Functional Autonomy Measurement System [SMAF]); a classification system consisting of 14 standard disability profiles (Profiles Iso-SMAF), used to translate needs into the necessary resources and allocations; case managers already deployed as part of the integration of services following the PRISMA project; computer tools to support the development of intervention plans and service allocation; and an efficient management body that is already keen on this type of funding model, the Régie de l’assurance-maladie du Québec [5].

Following the publication of a white paper [6] that was well received by all stakeholders, a bill was tabled in the National Assembly in December 2013. It was never adopted due to the hasty election call and the loss of power by the Marois government. The bill was not taken up by subsequent governments. The project may be dead, but the idea is not, and the elements that that would make it possible are still present. It is all the more relevant today in light of the Covid-19 crisis.

Our seniors deserve to age at home with the services they need. If the funding and organization of services is adapted to 21st century realities, Canadians and Quebecers will choose to age at home and will resist the siren calls of residences and other places of institutionalized social exclusion. 

Réjean Hébert, M.D., M.Phil., Professor, Department of Health Administration, Evaluation and Policy, École de santé publique de l’Université de Montréal (ESPUM)

An edited version of this text appeared in Options politiques de l’Institut de recherche en politiques publiques: //policyoptions.irpp.org/fr/magazines/may-2020/les-soins-a-domicile-financer-davantage-mais-surtout-autrement/

References :

[1] OECD. Health at a Glance 2019: OECD Indicators. https://www.oecd-ilibrary.org/social-issues-migration-health/health-at-a-glance_19991312

[2] Hébert, R. 2006. Les vieux se cachent pour mourir. //www.ledevoir.com/opinion/idees/464685/les-vieux-se-cachent-pour-mourir

[3] Huber, M., Rodrigues, R., Hoffmann, F., Gasior, K., & Marin, B. 2009. Facts and Figures on Long-Term Care. Europe and North America. Vienna: European Centre for Social Welfare Policy and Research.

[4] Hébert, R. 2012. L’assurance autonomie: une innovation essentielle pour répondre aux défis du vieillissement. Revue canadienne sur le vieillissement, 31(1):1-11.

[5] Hébert, R., Gervais, P., Labrecque, S., & Bellefleur, R. 2016. L’assurance-autonomie au Québec : une réforme inachevée. Health Reform Observer – Observatoire des Réformes de santé, 4(1):Article 1. doi: dx.doi.org/10.13162/hro-ors.v4i1i.2737[6] Hébert, R. 2013. L’autonomie pour tous: livre blanc sur la création d’une assurance autonomie. //www.assnat.qc.ca/fr/travaux-parlementaires/commissions/csss/mandats/Mandat-24161/index.html



Confinement chronicle

This essay is part of a series of reflections on primary care during the pandemic presented by Réseau-1 Québec. The original essay published in French on December 3, 2020 is available here >>

For several years now, I’ve been a patient-partner for my own care. This has been important because, as someone living with cystic fibrosis, I’ve learned more about my disease and have been able to talk about it with my health care team. All my life, I’ve been sailing on this big cruise ship that is the health care system. I have experienced some important failures as well as great successes, including my successful bilateral lung transplant six years ago. I’ve always received the highest quality care in a system that is often out of breath and travelling at top speed. I’m very grateful to all health care staff.

I wanted to do something to express my thanks, but I didn’t know if there was anything I could do. For a long time I had been carrying around a large “backpack” where I had stashed my experiences of receiving care and living with a chronic condition, but I could never figure out if this backpack had a purpose to serve. I talked about it with one of my doctors and a door was kindly opened for me. That’s how I became a patient-partner.

For the past several years I’ve been collaborating with the SPOR Pan-Canadian Primary and Integrated Health Care Innovations Network (PIHCI Network), of which Réseau-1 is the Quebec member. As part of this network, I’m one of the Quebec representatives on the Pan-Canadian Patient Council. Every month, for a little over two years now, I’ve been meeting with about ten colleagues from every province in the country. We get together to talk about best practices in patient partnership across the country. We talk a lot. This networking is rewarding because it breaks down some barriers. It helps us to better understand the partnership realities of each province and, at the same time, to work collaboratively.

One thing is for sure, the atmosphere is definitely dynamic and there is no shortage of projects!

At the end of last winter, things were going along well, and then came March 23rd. Quebec was put on hold and a series of similar measures were deployed in all Canadian provinces. Despite all the turmoil created by the pandemic, we continued our activities. And it was my involvement as a patient-partner on the Pan-Canadian Patient Council that enabled me to get through the first wave without sinking. It was thanks to the strength of the group that we got through it.

Our March meeting, which had been scheduled for some time, went ahead as planned. However, as we went around the table at the beginning, several of us had to admit we weren’t doing well: anxiety, stress, trouble concentrating, things were not looking good. We had a thousand and one questions on our minds, and no answers. It was very scary! That day, when it was my turn to speak, I burst into tears and said, “I’m afraid of dying. I’m afraid I won’t be able to receive care.” I had become obsessed with the issue of “non-Covid” patients, an issue that still worries me just as much, I have to say.

As a group, despite our individual difficulties, we decided to continue our activities, if only to overcome our isolation, among other things. From this common decision, an interesting proposal arose: what if we saw each other more often? We accepted the idea with great enthusiasm.

While we each experience the pandemic in our own way, no one should have to spend every day coping with this kind of obstacle in fear, isolation, and without resources. We increased the pace of our meetings to twice a month. The meetings were more informal so we could support and encourage each other. These meetings became a beacon in the fog that had invaded my daily life since the start of the pandemic. They helped me to regain confidence in my abilities and to feel less alone with my “covidian” worries. Eventually, I was able to tap into my “backpack of experiential knowledge” where I found resilience and a great capacity to adapt, which have helped me to live better since then.

This summer, the patient-partners in that group participated in the PIHCI Network webinars, and we had the privilege of hosting one: « Making the invisible visible: the power of partnerships between patients and their communities ». We’re also planning to produce podcasts in the near future, where we will discuss patient partnership based on each individual’s experiences. Our meetings have gone back to a regular schedule, and we’re doing well despite the second wave now surging across the country.

Sometimes, when I’m asked what it’s like to live with illness, I like to use the image of a house of cards. Through the winds of adversity, I’ve had to deal with some really surprising things to be able to move on more effectively. I’ve rebuilt certain aspects of my life. I’ve gone through a lot of grief and major changes. It is a complex life that has become meaningful through happiness, resilience, and above all, tenacity. Always remember that when a patient-partner speaks to you in the context of a patient partnership, it’s done in a spirit of openness, generosity, and often because he or she considers it to be an important added value in the broader picture of the health care system.

Recently, I’ve had conversations with patient-partners who tell me they’ve had no news of the research teams they were involved with. Some even said they felt abandoned, as if their contribution didn’t really count. Times are hard for everyone; a short follow-up, a callback, a little “hello” can make a difference in a situation where many patient-partners have been isolated for several months and are going through difficult times.

Even though I present my own opinion in this essay, I’m speaking here as a patient-partner member of the Pan-Canadian Patient Council. Everything I’ve said above are purely my own thoughts. Don’t worry, I don’t pretend to speak for all patients. I want to make it clear that I’ll be here, once the pandemic is over, ready to help you, to collaborate in sharing my experiential knowledge, which I hope will continue to contribute to the enrichment of primary care. My wish for us all is that whatever we learn from this will be used to improve the quality of patient care.

Having said that, I can also tell you that, after eight months of confinement, I’m really looking forward to seeing you for “real”. There is a light at the end of this long tunnel—it’s called 2021.

Karina Prévost, Patient-partner, member of Réseau-1 Québec



Picking one’s battles: COVID-19 and I

This essay is part of a series of reflections on primary care during the pandemic presented by Réseau-1 Québec. The original essay published in French on November 3, 2020 is available here >>

Last March, the province was put on pause. Everything stopped. Everything, that is, except the health care system, which went into crisis management mode. The microscopic enemy triggered panic among the population and all involved in the health care system. We’ve never seen anything like it!

In primary care, practitioners were thrown into a state of chaos. Lots of questions and few answers. Mandatory reorganization: everyone in protection mode. Protecting others. Patients. The most vulnerable. Protecting ourselves from others, too, with our own vulnerabilities. We witnessed unprecedented situations: non-emergency surgeries cancelled, specialist physicians unable to practice, outpatient consultations stopped, activities jettisoned, massive reassignment of staff, most research activities halted. And all of this while the community was suffering through major turmoil with closures of businesses, schools, and regions.

In our health care organizations, everyone had to give thought to what they would do to redefine themselves. What role to play? Nothing was dictated. We had to build the plane and fly at the same time. As a researcher and family medicine clinician, I was faced with a choice: what part of the plane could I help build?

The colleagues in my family medicine group (FMG) were pioneers in applying the measures prescribed by the authorities. Champions. We banded together. Everything was reorganized. In this chaotic turmoil, as a researcher nearing the end of my career, I suddenly felt very useless. Protected by colleagues because of my age and hamstrung in my research, it was unthinkable to me that I would not contribute to the collective effort.

The call from public health was timely. Outbreaks were happening; professionals from all sectors had just been repatriated to public health. A medical team was needed to assist with epidemiological investigations. I jumped right in.

First, we had to learn the National Institute of Public Health’s interim recommendations (interim, as it turned out, was the key word) for community cases, for health care workers, for seniors’ residences, for CHSLDs. We also had to become familiar with the legal context: emergency measures, public safety, the powers of the public health department, quarantine law. Then juggling with risk management and its consequences. Quite a change for a clinician accustomed to treating patients individually, and for a researcher focused on patients with multiple chronic conditions! All this can be learned quickly when you accept that what’s true today may not apply tomorrow! After all, we’re building the plane!

From one day to the next, we found ourselves part of a relatively eclectic medical team: family doctors, emergency doctors, surgeons, specialists, professionals of all disciplines. All loaned to public health for different reasons and working for the same cause: the protection of patients and the community.

With the arrival of summer, we entered a lull. Activities were gradually resumed in a redefined way, that became, little by little, our new normal. In the clinic: teleconsultation, limited time allotted for face-to-face visits, distancing, protective equipment. In research, slow resumption of activities. Back to ethics committees with requests for modifications to protocols, consent, procedures. We had to adapt to a new reality in the field. COVID-19 was here, we couldn’t ignore it.

And the lull was short-lived. With the arrival of fall, Quebec deployed its system of color codes, no doubt inspired by the season, and regions that started out green transitioned to yellow, then orange, then red, at different rates. What does winter have in store for us?

Our governments have invested generously to help the population get through this. As have our research funding agencies. Several funding opportunities have been created to generate knowledge. We need to understand this virus, how it’s transmitted, what destroys it, what activates it, what reactions it causes in animals, in humans. We also need to understand the crisis we’re experiencing, its impact on the population, on children, on seniors, on the most vulnerable. In short, we have everything to learn. For many researchers whose work was on hold, this was an ideal opportunity to help answer these questions. Bravo, and thank you for putting your own research agenda aside and working for this cause that affects us all!

For my part, I made the choice to hold down the fort. I didn’t apply to any funding program. That wasn’t the call I felt. I stayed in the here and now, in crisis management. The crisis called out to me as a researcher, caregiver, and first responder, as well as to my fears; I needed to help make a difference by acting swiftly, I needed to attend to my own fears. Our surest defense at this time is to control spread, which involves rapid identification of cases and contacts, their stratification, and isolation. At first glance, this sounds simple, but implementation of these measures can be very demanding. Data collection is required, which has certain obvious constraints, and personalized analysis in real time. Each situation has to be assessed in its entirety. And you really have to play detective to identify the source, formulate hypotheses, and then try to validate them. In short, there are many elements that correspond to the skills required in research. So for me, it made sense. And finding in the public health team, however eclectic it may be, the same values that I expect from my research collaborators motivated me to come on board. Caring, vigilance, rigour, adaptability, resilience, these are all attributes that I have found in my colleagues—physicians, nurses, kinesiologists, nutritionists, dental hygienists, occupational therapists—all working with a single goal: to help curb the spread of the invisible enemy using a transdisciplinary approach; a concept I learned in research but that I’m truly experiencing in public health!

As of October 22, a PubMed search identified 66,496 articles on COVID-19. My contribution to this research was nil. As of October 22, the Saguenay Lac-St-Jean region had 891 cases of Covid-19, including 290 active cases, and 1,229 people were in isolation at the time of writing, or about 0.5% of the population. All our efforts are aimed at keeping these figures as low as possible. It may be that I’m disappointing my university by not participating in the research effort, but I’ve decided instead to fight for my community. In my dual role as researcher and clinician, choosing my battles comes down to a question of emotions, which reason alone cannot explain, but to which I’m happy to respond.

Martin Fortin, M.D., M.Sc., CMFC, Professor and researcher, Department of Family Medicine, Faculty of Medicine and Health Sciences, Université de Sherbrooke, GMF-U de Chicoutimi, CIUSSS du Saguenay–Lac-Saint-Jean





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