Program 2 : Medical, Paramedical, Ethics, PROMS

Program 2 : Medical, Paramedical, Ethics, PROMS

PROGRAM LEADERS

Dr Jean-François ALEXANDRA

  • Associate Professor of Internal Medicine, Oncogeriatrician.
  • Chairman of the GHU Ethics Committee
  • Chairman of the Ethics Commission of the Université Paris Cité
  • Coordinator of Ethics and Human sciences Education at the Université Paris Cité
  • Member of the Scientific Committee of iDEX “La personne en médecine« 

Abida HANEEFA-AZY

  • Advanced Practice Nurse
  • Paramedical Coordinator 3 C Ouest  AP-HP. Nord – Université Paris Cité
  • Member of the Cancer Institute AP-HP. Nord – Université Paris Cité
  • Member of the AP-HP Advanced Practice Nurses
  • Member of the Advanced Practice Nurses IDF ( Ile-de-France) Association

Karine GAUDRY

  • Senior health executive – Quality-Risk Coordinator of DMU VICTOIRE – Bichat and Saint Louis hospitals
  • “Health simulation” Co-Project manager at Bichat Hospital
  • Member of the ANAP experts network

To be effective, the quality and safety management in cancer care must be part of a long-term strategic approach, and continuously involve all hospital staff. The quality management system control is based on all committees and sub-committees of the CME (Commission Médicale d’Etablissement / Medical Committee of the Institution), and is reflected by the involvement of professionals as part of a field approach. The joint involvement of the CMEL, the Care Management and the Quality Management is essential to ensure that the approach is fully adopted by the entire health care community.

Strengthening the tools controlling the quality and risk management is a major challenge in the context of the complementarity required between the institutional approach and its implementation within the medical-university and hospital departments. The control and monitoring of the approach are embodied in a program dedicated to quality and safety of care improvement (PAQSS). The PAQSS results from the orientations of the institution’s project. The GHU PAQSS includes several sections which are adapted at each GHU site.

The latest HAS (Haute Autorité de Santé – French High Health Autority) certification process, « Certification of health establishments for care quality », is based on continuous, longstanding, and evolving action involving the patients, institution, and all care givers. This approach is meant to be dynamic and integrates better coordination of the various stakeholders with a dual objective: improving practices / improving care quality and service rendered, which is particularly true in cancerology. In line with this process, the OECI (Organization of European Cancer Institutes) accreditation process, aiming at obtaining the « Comprehensive Cancer Centre » certification, and the JACIE (Joint Accreditation Committee ISTC EBMT) process, dedicated to hematology, are quality guarantees for the Cancer Institute AP-HP Nord. These accreditation processes target continuous improvement in care quality, research and teaching in the field of cancerology.

Efficient electronic document management (EDM) is an essential part of this approach, implying common and easy-to-use EDM software for all sites, and ensuring easy handling by all care givers. Beyond being a tool, this approach is based on sharing procedures, operating methods, and other care information documents with the entire medical community. The care givers are involved in the regular updating of documents. The arrival of a new electronic document management software (EDM – ALFRESCO), currently being deployed on all hospital sites, should enable the progress of practices by providing more easily mobilized resources made accessible to all staff members.

According to the December 2005 government notification and measure 32 of the 2009-2013 Cancer Plan related to cancer care organization, the implementation of a quality network is supported by the Cancer Coordination Center (3C). Defined as genuine operational quality units, which are single or multi-institutional and mandatory for all health care institutions certified for cancer care by the ARS (Agence Régionale de Santé – Regional Health Agency), the term 3C covers the organization and quality missions in cancer care.

The Cancer Institute AP-HP. Nord – Université Paris Cité has three Cancer Coordination Centers working in close collaboration: 3C « West » (Bichat, Beaujon, Louis Mourier and Bretonneau Hospitals), 3C « East » (Lariboisière-Fernand Widal and Saint-Louis Hospitals), and 3C « Pediatric » (Robert-Debré Hospital). These centers are in charge of the coordination among the medical, nursing, medico-social and administrative staff involved in cancer patient care and in managing quality audits. These cross-functional operational structures represent a major asset for the institution, as they are committed to the proper implementation of quality measures concerning cancer care. This also comprises the transmission of regulatory and organizational information, information on cancer care activities, especially during the biannual plenary sessions, as well as the evaluation of cancer patient care within the establishments.

The GHU’s overall policy prioritizes patients’ rights by meeting regulatory requirements and remaining faithful to its values of information, transparency, and user participation. This policy favors the reinforcement and consolidation of already established practices, such as taking into account the opinions and recommendations of national and local ethics committees, reinforcing the respect for the privacy, dignity, vulnerability of the patient as well as confidentiality, GDRP requirements compliance (General Data Regulation Protection), opinions and secularism respect, informing the patient and his or her family circle in an appropriate manner, and ensuring traceability, among other things.

A patient pathway (sometimes called a “care pathway” or “clinical pathway”) defines decision-making and organization of diagnostic plans and care processes for a specific group of patients in well-defined stages, starting with cancer suspicion stage to survivorship/follow-up or end of life stages. The definition and optimization of these pathways is one of our primary goals to offer the most appropriate care. Our most renowned patient pathways are pediatric onco-hematology, adult onco-hematology, breast cancer, and digestive cancers pathways.

Measuring the care quality perceived by the patient is a crucial part of its improvement. The e-satis system deployed since 2016 by the HAS is a satisfaction collecting tool, and we aim at structuring and optimizing the use of these questionnaires’ results by our teams for concrete improvements in daily care. The development and implementation of specific computerized tools for collecting PROMs (Patients-Reported Outcome Measures) and PREMs (Patient-Reported Experience Measures), of instruments quantitatively and qualitatively assessing health outcomes and the care experienced by patients, is ongoing within the institutions of the AP-HP North Cancer Institute. Different tools are developed specifically in the field of cancer care, whose appropriation by patients and caregivers is being compared.

Patient commitment is the keystone of our quality approach and is based on a reciprocal commitment: from the patient, who shares with the care givers a feedback on his or her experience, and from our teams to the patients for a common goal and common benefits. The impact on the improvement of the quality and safety of patient care goes hand in hand with an improvement in the quality of life and job satisfaction of the hospital teams. Patient participation, with the patient being her/his key managerial actor, is being promoted, thus becoming an integral part of our daily practices and projects. The mission of the GHU’s patient engagement committee (co-chaired by the deputy director general, CMEL’s vice president and a user representative) is the coordination of the GHU’s patient engagement strategy with the patient engagement committees at each hospital site. A great relevance is attached to the collaboration and sharing of experience and practices among the hospital staff, patients, and users.

A « Cancer Patients’ Committee » has been created, in line with the DHOS circular n° 2004-516 from October 28, 2004 and OECI standard N°19, which relate to patients’ committees within health institutions providing cancer treatment. This committee gathers members of the main associations of patients with cancer or hematological malignancies, which are active within the GHU. The committee works in close link with the user commissions of the hospitals, the GHU, and the GHU’s patient commitment committee. The main goals of the cancer patients’ committee are to:

  • Raise awareness among hospital and translational research teams about patients’ needs for information on cancer and its management, but also on clinical cancer research.
  • Promote dialogue among patients, hospital teams, and cancer research teams, but also include patients into clinical or translational cancer research protocol development to enable a better understanding and adherence by the patients.
  • Improve the everyday life of patients treated in the cancer services of the GHU AP-HP. Nord, by working with the authorities, CMEL and coordination team of the Cancer Institute, and to provide feedbacks on the care, organization, and how hospitals work in cancerology.
  • Participate in the general assemblies of the « Cancer Institute » Federation and in the « Medical, Paramedical, Ethics and PROMs » thematic axis meetings of the Cancer Institute, by being a force of proposal.
  • Review and give a feedback on all information documents intended for patients, provided by all clinical and research structures of the Cancer Institute / SIRIC AP-HP Nord.
  • Supply any ethical opinion that its members may want to spontaneously issue, or when requested by the GHU components, especially concerning clinical and translational research protocols promoted within the GHU and the SIRIC, as well as on information documents given to patients, or proposing patient’s to participate, by evaluating if these documents are clear and understandable to all.
  • Three representatives of the Cancer Patients Committee are implicated in each of the three 3Cs (Cancer Coordination Centers) of the Cancer Research Institute: the East 3C (Lariboisière/St-Louis Hospitals), the West 3C (Bichat, Beaujon, Louis Mourier Hospitals) and the Pediatric 3C (Robert Debré Hospital).

The composition of the first AP-HP Nord Cancer Patients’ Committee involves a full representative (and his/her substitute) from the “Ligue contre le Cancer” covering the Paris-Nord GHU territory, as well as a full representative (and his/her substitute) from each association identified as already intervening within the GHU and representing the diversity of cancers treated within the AP-HP Nord. Partner patients previously or currently treated at the GHU are also welcomed to join this committee. Any other non-profit cancer patient association may subsequently send an application to the elected Patients Cancer Committee Chairman so that one of its volunteer representatives can be part of the Patients Cancer Committee (with a substitute), after validation by a vote of the Committee meeting during a plenary session.