Original Title: Avis: utilisation des données cliniques issues des dossiers médicaux électroniques à des fins de recherche et d’amélioration continue de la qualité des soins et services de première ligne

Authors' objectives: A Learning Health System (LHS) allows improving the medical care network and the health of the population through generating and applying knowledge about the processes of care. In Quebec, electronic medical record (EMR) data related to the front-line social care and social services is difficult to access due to the diversity of existing systems, the complexity of the extraction process and the heterogeneity of the data. The Patient-Oriented Research Strategy Support Unit of Quebec ("the Unit") and l’Institut national d’excellence en santé et en services sociaux du Québec (INESSS) (National Institute of Excellence in Health and Social Services of Quebec) subscribe to the vision of contributing through their work to the implementation of a learning health system in Quebec. In January 2016, Dr. Antoine Groulx and la Direction de l’organisation des services de première ligne intégrés (DOSPLI) (the Directorate of Integrated Primary Services Organization) brought together the key players concerned with using clinical data from EMRs and asked them to produce a concept document and provide recommendations that could guide le ministère de la Santé et des Services sociaux (MSSS) (the Ministry of Health and Social Services) in future decisions on this matter. INESSS and the Unit agreed to co-chair a roundtable ("Roundtable") whose mission was to produce a report describing a coherent set of recognized measures and strategies based on empirical data and adapted to the current context in Quebec, including the identification of structures, standards and processes to ensure their sustainability as related to the support of monitoring activities and to the continuous improvement of quality and researches.

Authors' results and conclusions: RESULTS: This approach allowed for the consultation of many diverse and credible individuals (members of the Roundtable, interviews and workshops with many potential users). This Québec-wide consultative work, combined with state-of-the-art methods (such as reflexive multi-criteria approaches), has made recommendations aimed at optimizing the impact of the implementation of EMRs in Quebec, in particular, by developing service improvement activities and reflexive and research practices, as well as prioritizing these recommendations where appropriate. The findings indicate various issues that require actions in the short, medium and long term to ensure that the major investments already made in the EMRs and the forthcoming establishment of continuous quality improvement agents can lead to the improvement of the quality of practices and to a patient-centered health care system.

Authors' recommendations: OVERALL RECOMMENDATION: A. (COORDINATING ENTITY OF EMRS): Although the MSSS is ultimately responsible for the deployment strategy of EDMs in Quebec, implementation of the below-mentioned recommendations requires the creation of a space for coordination and cooperation of the different actors holding the implantation key levers. These recommendations are essential to ensure that EMRs achieve their full potential and contribute to the implementation of a relevant learning health system in Quebec. It is therefore recommended, under the leadership of the MSSS, to set up a coordinating entity for EMRs to jointly administer the strategic management of their implementation, use and development. This entity requires: o Chairmanship by a MSSS decision-maker holding the mandate, the resources and the power to exercise this mandate, and being able to "unite" the various concerned ministerial directorates and to exercise unifying leadership among the various stakeholders ; and o A participative structure that brings together stakeholders and allows for dialogue and collaboration in action. Key functions and actors are proposed as a basis for constitution of this entity as well as a list of the stakeholders forming the active forces of EMRs in Quebec. (POTENTIAL FUNCTIONS OF THE COORDINATING ENTITY) o Ensure ethical principles and legal standards (e.g., access and protection of information, legal liability); o Engage key players in EMRs (i.e., health professionals, patients) from the perspective of a learning health system: • Health professionals axis: to coordinate at the organizational and professional levels the implementation of incentives for reflexive practice of training and continuing professional development; • Patient axis: to coordinate the use of the portal, overall consent communication and quality assurance engagement; o To coordinate consultative processes, collaborations and networking among partners for the needs of a learning health system; • Supplier axis: governing collaboration and negotiations with suppliers (e.g. creating a space to allow a cooperation between them); • Technical axis: coordinating technological development (e.g. coordinating the development of priority functionalities, liaising with the producers of practices guides and quality indicators of l’Institut national de santé publique du Québec (INSPQ) (the National Institute of Public Health of Quebec) and INESSS); • Training and research axis: to promote the use of EMRs in training and to create conditions conducive to their use for research purposes; o Implementation monitoring, communications, and accountability (e.g. support for changes). (KEY PLAYERS) The coordinating entity should include the key actors proposed below, to facilitate the collaboration of all stakeholders: o Partner patients; o Direction générale des services de santé et médecine universitaire (DGSSMU) (General directorate of health services and university medicine); o Direction de l’organisation des services de première ligne intégrés (DOSPLI) (Directorate of integrated primary services organization); o Direction générale des technologies de l’information (General directorate of information technology); o The Patient-Oriented Research Strategy Support Unit of Quebec ("the Unit"); o Institut national d’excellence en santé et en services sociaux (INESSS) (National institute of excellence in health and social services) (mandate of clinical relevance, development of guidelines and quality indicators, entrusted within the framework of the business plan CoMPAS +); o Réseaux de recherche axée sur les pratiques de la première ligne (RRAPPL) (Front line practice research networks) and Département de médecine de famille universitaire (Department of university family medicine) ; o Centres intégrés de santé et de services sociaux (CISSS) (integrated health and social services centers), centres intégrés universitaires de santé et de services sociaux (CIUSSS) (integrated university centers for health and social services) and Départements régionaux de médecine générale (DRMG) (Regional departments of general medicine) and their front line directorates (integrated centers have mandates for quality improvement, sometimes issuing practice guidelines, and managing local information systems including EMRs for clinical teams) ; o Fédération des médecins omnipraticiens du Québec (FMOQ) (Federation of general practitioners of Quebec) (conditions of practice, incentives for quality improvement activities and reflexive practice – e.g. through continuing education credits - and promotion of physician membership of family. These key players will reach and engage in a participatory manner the following stakeholders targeted by the Roundtable: • EMR providers; • ministère de l’Économie, de la Science et de l’Innovation (digital strategy) (ministry of Economy, Science and Innovation) • Direction de la qualité et de l’éthique du MSSS (Department of quality and ethics of the MSSS); • Direction des affaires médicales et universitaires (Medical and academic affairs directorate) ; • health professionals (such as "influencers-users"): to ensure that they have good representation of family physicians (CQMF), nurses, social workers, pharmacists; • patient representation: patient-partners; • INSPQ: a mandate to monitor the health status of the population, epidemiology of the first line and quality indicators; • Collège québécois des médecins de famille (CQMF) ( Quebec college of family physicians) ; • professional associations; • relevant university faculties. (GENERAL PRIORITY RECOMMENDATIONS) These general priority recommendations are sine qua non for moving forward and ensuring a return on investment in EMRs. B. Access to EMR data: issuing promptly a departmental directive to clarify the roles, rights and obligations related to ownership, sharing and protection of clinical data to allow users access to data contained in the EMRs, and this, for all the suppliers of EMRs operating in Québec; this must be done in accordance with the ethical principles and legal standards prevailing in Quebec, notwithstanding the necessary evolution as mentioned in point D. C. Collaboration with EMR vendors: building a continuous process of collaborative work with and between vendors to meet the evolving needs of users. D. Global patient consent : developing a learning health system, making the necessary changes to the regulatory frameworks for prospective and global patient consent to allow the use of EMD data for purposes other than the provision of patient care and the assessment of the quality of the professional act in a local context (e.g. for research or comparative analysis). E. Culture of reflexivity: developing strategies to promote reflexive practice on the EMRs basis and support a culture of continuous quality improvement among health professionals and patients while affirming as a fundamental principle that the access to EMR data for purposes other than the immediate health care treatment is to support continuous improvement and not for surveillance. D. Specific recommendations: Seven specific recommendations were issued. A multi-criteria assessment identified some trends in the potential specific impacts of each recommendation, but also established that the overall potential impact factors (FIPG, linear summation model of the eight criteria) were similar across all recommendations, which led the Roundtable to propose them by logical grouping, without ranking. The exercise also identified trends in the feasibility aspects of each recommendation. It is envisionned that these results will guide the next steps and the plan for implementing the recommendations . F. Relevant and usable data: developing strategies for data entry (easy, intuitive, not excessively time-consuming) to ensure the production of relevant, valid, complete and easily interpretable data. This should be realized in cooperation with the different stakeholders with the goal of satisfying the needs of users (FIPG: 2.2 + 0.5 on a scale of 0 to 3, average feasibility). G. Processes and tools promoting reflexivepractice: establishing processes and tools in clinical settings to enhance reflexive practice and interest in EMRs through a collaborative application of existing assets (e.g.: CoMPAS +) and assets in development (e.g. continuous quality improvement agents (FIPG: 2.1 + 0.7 on a scale of 0 to 3, medium feasibility). H. Information on the EMR data and research: developing a metadata directory of the data contained in EMRs, which includes information on the quality and validity of data and is easily accessible online and updated regularly. The EMR suppliers will have to coordinate with this directory (FIPG: 1.8 + 0.5 on a scale of 0 to 3, average feasibility). I. Coordinating with patient portals: ensuring that EMRs allow for bi-directional coordination with the patient portals which are currently under development and providing favorable conditions for use of these portals by patients and healthcare professionals. (FIPG: 2.1 + 0.5 on a scale of 0 to 3, low feasibility). J. Data on organizational management of care and services: developing the capacity of EMRs to produce relevant information regarding the organization of health care and services (e.g. care pathways) for use in clinical-administrative settings (FIPG: 2.1 + 0.6 on a scale of 0 to 3, medium feasibility). K. Integration of tools for clinical decision support: fostering adoption, adaptation or co-construction, then integration of validated decision support tools for which access is possible within the EMR interface to provide a support that is integrated into the workflow of health professionals while ensuring cooperation with the various stakeholders (FIPG: 2.1 + 0 , 5 on a scale of 0 to 3, average feasibility). L. Training: developing training strategies for health professionals for the optimal use of EMRs (e.g. data capture, interactions) and coordination with initial and continuing training monitoring tools, while ensuring cooperation with higher education institutions and professional organizations (FIPG: 1.8 + 0.5 on a scale of 0 to 3, high feasibility).

Authors' methods: A review of the literature and a consultative process to explore the needs of potential users of the data contained in Québec's front-line EMRs brought several findings regarding the use of these data. A deliberative process based on state-of-the-art methodologies was held at a Joint Roundtable meeting on April 21, 2017, followed by an individual scoring process and final ranking during a webinar session held on June 7, 2017. Methods for optimizing the deliberative process adapted to the Roundtable have been developed: o a method structuring the findings identified by the work team to facilitate the drafting and validation of recommendations by the Roundtable participants (adapted PICOS method); o a multi-criteria reflective approach to assess the potential impact (eight criteria) and the feasibility (three criteria) of the recommendations related to a relevant learning system as well as to facilitate the ranking of these recommendations.

Project Status: Completed

URL for project: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/utilisation-des-donnees-cliniques-issues-des-dossiers-medicaux-electroniques-a-des-fins-de-recherche-et-damelioration-continue-de-la-qualite-des-soins-et-services-de-premiere-ligne.html

Year Published: 2018

URL for published report: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/utilisation-des-donnees-cliniques-issues-des-dossiers-medicaux-electroniques-a-des-fins-de-recherche-et-damelioration-continue-de-la-qualite-des-soins-et-services-de-premiere-ligne.html

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: Canada

Province: Quebec

Organisation Name: Institut national d'excellence en sante et en services sociaux

Contact Address: L'Institut national d'excellence en sante et en services sociaux (INESSS) , 2021, avenue Union, bureau 10.083, Montreal, Quebec, Canada, H3A 2S9;Tel: 1+514-873-2563, Fax: 1+514-873-1369

Contact Name: demande@inesss.qc.ca

Contact Email: demande@inesss.qc.ca

Copyright: Gouvernement du Québec