DemoCan research chair

Presentation

  

logo democan There have been significant advances in cancer treatment within the French healthcare system. Yet, there remains a lot of progress to be made in terms of integrating patients’ perspectives in healthcare institutions and the care relationship, which is crucial to providing assistance to patients and caregivers in the management of the disease. Likewise, more research is needed to better understand the impact of integrating patients’ experiences in institutional governance bodies and care pathways:  Is this approach an effective safeguard against decisions and actions that are disconnected from people’s actual lives and concerns?

 

The aim of the DemoCan Research Chair is to analyse the involvement of people affected by cancer on several levels, from the care relationship to public health policy-making. The Chair encourages the development of participatory and interventional research projects on topics ranging from prevention to the structuration of care pathways. It also seeks to promote the diffusion of participatory research practices and to create adapted instruments for assessing what these practices bring to the table. As such, the Chair will produce critical and analytical reflections on the participatory methodologies mobilised in its own research projects. We firmly believe that the first step in taking into account patients’ perspectives is to respect their abilities to understand and become involved in the decisions that primarily concern them. This perspective requires the creation of information materials that are designed with and evaluated by them. 

 

In order to find out more, please click on the link to the Inaugural Lecture of the Research Chair “Health Democracy and the involvement of persons affected by cancer” that took place on November 30th, 2022, at the Pharo Palace in Marseille: 

 

 

Research Axes

The Chair is organised around 3 research axes:

  • Research Axis 1 aims to observe and describe how health care democracy / patient and public involvement (PPI) is deployed in the field of oncology and to identify both the obstacles it faces and the levers at its disposal. This research axis includes a socio-historical examination of the systems implemented on the local, regional and national scales, followed by a comparison of these systems with international experiences. We aim to analyse the ethical, socio-economic and legal aspects of PPI in oncological clinical care, research and/or public health policy-making. 
  • Research Axis 2 centres on action and interventional research to improve care and screening pathways. Its focus is on participatory research projects.
  • Research Axis 3 is concerned both with the care relationship between medical professionals and patients and with the role of consent. It explores the tools and methods needed in order to foster patient involvement in healthcare decision-making. It also addresses topics such as informed decision-making, shared decision-making instruments in contexts where several treatments are available, and participation in research protocols. 

 

Members of the Chair

Sandrine Silvia Francesca Julia

Sandrine de Montgolfier

Head of the Research Chair, Lecturer in biomedical ethics

Silvia Rossi

Lecturer in literature (University of Lorraine)

Francesca Mininel

Researcher in anthropology (Institut Paoli-Calmettes)

Julia Tinland

Postdoctoral researcher in biomedical ethics
   

Séverine Carillon

Postdoctoral researcher in anthropology

Maryam Mazouz

Doctoral student in public health

    
Research Projects

DemoCoCan

In spite of its well-documented negative impact, the COVID-19 health crisis has prompted a variety of actors (patients’ associations, medical professionals) to develop truly innovative strategies of individual and collective resistance that may be applicable to wider areas of care. 

This research project explores these positive contributions so as to highlight their relevance and bring forward proposals for change in post-pandemic cancer care and research. Together with the actors concerned, the project develops evaluative instruments and initiatives that will help to institutionalise some of these achievements and to propose new interventions.

 

Click here to find out more about the project.

4P

The French 10-year strategy to combat cancer 2021-2030 calls for “streamlining and adapting the care pathway”. Achieving this requires working with ill individuals and healthcare professionals to create interventions adapted to a variety of contexts.

The objective of this project is to create an intervention that offers improved care pathways based on strong partnerships between professionals and persons affected by cancer in several locations.

 

Click here to find out more about the project.

projet 4p

REPS-LLC

This participatory research project aims to improve care pathways for patients diagnosed with Chronic Lymphocytic Leukaemia (CLL). Developed in partnership with the patients’ association ELLyE, the project is organised around 3 axes and engages in a reflective evaluation of participatory approaches.

Axis 1 aims to better understand the experiences, needs and expectations of patients diagnosed with early stage CLL who are under surveillance but not treated.

Axis 2 focuses on co-constructing and evaluating shared decision-making instruments for patients who need treatment but must decide between several medically-equivalent options. This involves assessing the information and support needs of these patients.

Axis 3 is concerned with determining the conditions for improving coordination between hospital care providers and general practitioners in the management of patients under surveillance who wish to avoid hospital settings. 

 

Click here to find out more about the project.

  

 

Promotion of Research Results

Scientific Articles

 

  • Montgolfier, S. de, & Hervouet, L. (2022). L’imagination comme levier méthodologique pour mobiliser un questionnement éthique. Revue francaise d’ethique appliquee, 12(1), 37-52. 
  • Droin-Mollard, M., Hervouet, L., Lahlou-Laforêt, K., & Montgolfier, S. de. (2022). Les propositions génomiques en oncopédiatrie : Bouleversements des temporalités et des repères éthiques — points de vue des patients, des parents et des professionnels. Psycho-Oncologie. https://doi.org/10.3166/pson-2022-0176 
  • Roux Alexandra, Cholerton Rachel, Sicsic Jonathan, Moumjid Nora, French David, Giorgi Rossi Paolo, Balleyguier Corinne, Guindy Michal, Gilbert Fiona, Burrion Jean-Benoit, Castells Xavier, Ritchie David, Keatley Debbie, Baron Camille, Delaloge Suzette, de Montgolfier Sandrine. Study protocol comparing the ethical, psychological and socio-economic impact of personalised breast cancer screening to that of standard screening in the “My Personal Breast Screening” (MyPeBS) randomised clinical trial. BMC Cancer 2022 ; 22 (1) : 507. 
  • Tinland, J. (2022). La leucémie lymphoïde chronique, un intrus souvent discret et un objet de réflexion philosophique. médecine/sciences, 38(8 9), 718 721. https://doi.org/10.1051/medsci/2022101 
  • Giroux, É., Gansel, Y., Basbous, L., Tinland, J., Sujobert, P., Darrason, M., & Gauld, C. (2022). Oncologie et psychiatrie : Pour une relation réciproque féconde. médecine/sciences, 38(4), 381 386. https://doi.org/10.1051/medsci/2022042 
  • Tinland, J. (2022). Personalised Prevention: Increasing or Decreasing Over-Medicalisation , Overdiagnosis and Overtreatment ?. In: Beneduce, C., Bertolaso, M. (eds) Personalized Medicine in the Making. Human Perspectives in Health Sciences and Technology, vol 3. Springer, Cham. https://doi.org/10.1007/978-3-030-74804-3_5 
  • Tinland, J. (2023). Entre Ultra-Haut Risque (UHR) et Syndrome de Psychose Atténuée (APS) en psychiatrie : enjeux éthiques autour de la vulnérabilité, dans Promesses et Limites de la Psychiatrie Personnalisée dirigé par Christophe Gauld, Elodie Giroux, Steeves Demazeux, éditions Hermann.

 

Scientific Communications

  • Carlotta Magnani, Francesca Mininel, Marc Egrot. Entre distanciation physique et proximité sociale. Une proxemie de l’accueil en temps de pandémie.. Anthropologie et Covid-19. États, expériences et incertitudes en temps de pandémie. Colloque Amades: Anthropologie et Covid-19, Amades: Anthropologie Médicale Appliquée au Développement et à la Santé, Jun 2022, Marseille, France. hal04030080 
  • S.de Montgolfier & S. Rossi. Croiser les expériences d’engagent des patients et patientes : Deux exemples de recherche sur le parcours de soins en cancérologie. 32ème congrès de l’ALASS (Association latine pour l’analyse des systèmes de santé). L’expérience patient : un nouveau paradigme pour la santé publique et les soins de santé. Barcelone. 1-3 septembre 2022. https://www.alass.org/fr/calass/calass-2022/ 
  • S.de Montgolfier. Valoriser l’expérience et favoriser l’engagement des patients, des citoyens et des professionnels en cancérologie autour d’une chaire de recherche. 32ème congrès de l’ALASS (Association latine pour l’analyse des systèmes de santé). L’expérience patient : un nouveau paradigme pour la santé publique et les soins de santé. Barcelone. 1-3 septembre 2022. https://www.alass.org/fr/calass/calass-2022/ 
  • Sandrine de Montgolfier, Nadège Berlioz, Chaïma Benssekoum, Sylvie Faiderbe, Alice Polomeni, Matthieu Delaye. Perception des acteurs du parcours de soin des patients atteints de cancer colorectal : une étude par et pour les patients et professionnels. Session Rôle des associations de patients et d’usagers, des patients partenaires / Démocratie en santé au 12e congrès national des réseaux de Cancérologie “Complexités & patients atteints de cancer. Rôles des réseaux et des structures de coordination”. Bordeaux 3&4 octobre 2022. https://www.congres-reseaux-cancerologie.fr/ 
  • Sylvie Faidherbe & Sandrine de Montgolfier. Les atouts et limites d’un projet de recherche co-construit sur le parcours de soin des personnes atteintes de cancer colorectal. 3ème Colloque international sur le Partenariat en santé. Rennes. 5-7 octobre 2022. https://partenariat2022.sciencesconf.org/ 
  • Amélie Jaouen & Silvia Rossi. Patient·es et chercheures : comment collaborer pour améliorer le parcours de soins en cancérologie ? Séminaire du « Groupe du 13 », Patient·es et citoyenn·es partenaires de la recherche en santé : quel statut, Nancy, 8 novembre 2022. 
  • Sylvie Faidherbe & Sandrine de Montgolfier. Projet 3P, un projet totalement co-construit : quels savoirs ont été partagés, échangés ? lesquels ont été oubliés ou auraient dû être pris en compte ?Séminaire du « Groupe du 13 », Patient·es et citoyenn·es partenaires de la recherche en santé : quel statut, Nancy, 8 novembre 2022.
  • Joëlle Kivits & Silvia Rossi.  Améliorer le parcours de soins en oncologie : comment mettre en dialogue disciplines et acteurs différents. Séminaire du Cancéropôle IDF : Pluridisciplinarité et méthodes pour la recherche SHS dans le domaine du cancer, Paris, 15 décémbre 2022. https://www.canceropole-idf.fr/2022pluridisciplinarite/ 
  • Sandrine de Montgolfier. Genomics and pediatric oncology: which ethics dilemmas for kids, parents and professionals? International Conference, PEDIATRIC RESEARCH AND INNOVATION: ETHICAL AND SOCIAL CONSIDERATIONS organized by Maria Christina Murano, Action Marie Skłodowska-Curie Project no 891750. March 23rd -24th 2023. Faculty of Medicine, University Autonomous of Madrid (UAM) 
  • Julia Tinland. Staging, stratification and how to incorporate risk into diagnostic classifications. Workshop Diagnosis in the making, 30 et 31 mars 2023, University of Copenhagen, Faculty of Public Health, Medical Museion
  • Joëlle Kivits & Silvia Rossi. Améliorer le parcours de soins en cancérologie : comment mettre en dialogue des savoirs différents ? Les Rencontres des Archives Henri Poincaré : La circulation et l'appropriation des savoirs scientifiques et épistémologiques dans les sciences et dans la société, Strasbourg, 11 avril 2023. 
  • Julia Tinland. Entangling the critical medical humanities with participative research: an innovative project on Chronic Lymphocytic Leukemia. 21 avril 2023, NNMHR Congress. CRITICAL. what matters for critical medical humanities now & how does critical medical humanities matter? http://nnmh.org.uk/nnmhr-congress-2023-call-for-submissions-and-theme-announcement/
  • Sandrine de Montgolfier, Sylvie Faiderbe, Amélie, Jaouen & Silvia Rossi, Construire le partenariat avec les patient-es, étape par étape, un projet après l’autre, Congrès de l'Acfas, Session 473 : « Impliquer des patient·es partenaires dans la recherche et les soins et services en cancérologie : regards croisés entre France et Québec », Montréal, Canada, 8 mai 2023

 

Communications for Professionals and the General Public

Upcoming Events
  • Colloque international francophone « Impliquer des patients et patientes partenaires dans la recherche et les soins et services en cancérologie : regards croisés entre France et Québec », Montréal, Canada, 8 mai 2023, Congrès de l'Acfas, Session 473, co-organisé par Marine Delaunay, Silvia Rossi, Sabine Dutheil, Béatrice Jacques, Sandrine de Montgolfier, Marie-Pascale Pomey, Joelle Kivits. https://www.acfas.ca/evenements/congres/programme/90/400/473/c  
  • 1ère université d’automne de la Chaire démocratie en santé et engagement des personnes concernées par le cancer, Marseille, 17-20 novembre 2023. Sandrine de Montgolfier, Francesca Mininel, Silvia Rossi, Julia Tinland, Sylvie Faiderbe, Nadège Berlioz.
     
Partners
INCA IPC Cancéropole ISSPAM
Inserm AMU IRD