Background

Laurie Hendren Symposium

on Patient-in-the-Loop Data

Patient-in-the-loop data are healthcare data that are shared in real-time with the patient (or their informal caregivers) just as they are with the professional members of the patient’s care team. They promote patient empowerment, transparency, and shared decision making.

As the population ages and the demands on the healthcare system increase, there is growing recognition of the value of empowering patients to play a more informed and active role in their care. But, the vast majority of patients, particularly in Quebec, do not have direct or real-time access to their healthcare data. As such, most patients are second-class members of their own care teams and unable to play a fully-informed and active role in their care.

Patient-in-the-loop data are designed to ensure that patients are always in the loop about their own health and healthcare and are empowered to make informed decisions.

Starting the conversation in Quebec…

This hybrid symposium at the RI-MUHC will discuss the pros and cons of the patient-in-the-loop data model as well as the barriers and facilitators to implementing it in Quebec.

The one-day event will consist of an engaging mix of keynote presentations from international experts on patient access to data and panel discussions with patient partners, experts in value-based healthcare, digital health, and healthcare data sharing.

Join us on August 28th, 2024, and help us to jumpstart the conversation around this important topic in Quebec! Presentations will be in a mix of English and French

Join the discussion

August 28th, 2024 at the RI-MUHC.

Participation in the symposium is free but onsite attendance is limited.

Reserve your place now to avoid missing out. Breakfast and lunch will be provided for all onsite attendees.

Laurie's Story

Laurie Hendren

1958 - 2019

Laurie Hendren was a professor of Computer Science at McGill University and a “patient warrior” who fought for patient rights in Quebec. It was Laurie’s vision that all Quebec patients would have unfettered access to their health data. She helped create the Opal patient portal, which has been providing patients at the MUHC with direct access to some of their medical records in the hospital since 2018.

Today, direct access to medical records is becoming the standard of care in many parts of the world. But Opal is still the only patient portal in a Quebec hospital. The vast majority of Quebec patients do not yet have direct access to their health data.

This symposium in Laurie’s honour will bring together international and local experts on sharing data with patients to discuss how we can achieve Laurie’s vision.

Speakers

EXPERT KEYNOTES AND PANELISTS

Maria Hägglund

Researcher

Maria Hägglund, PhD, is an associate professor in health informatics and a senior lecturer in implementation science at the Uppsala MedTech Science & Innovation Centre, Uppsala University. During 2019/2020 she was a Keane OpenNotes Scholar and a visiting Lecturer on Medicine at Harvard Medical School. Her research has focused on user-centered systems that support collaboration and patient empowerment. As a member of the DOME research consortium and PI for the international research project NORDeHEALTH, as well as several Swedish research projects, she has explored the impact of patients’ online access to their electronic health records (including notes). She was the Chair of the Swedish Medical Informatics Association (SFMI) 2020-2022, and as such represented Sweden in the International Medical Informatics Association (IMIA) general assembly. Maria chairs the EFMI Working Group “Citizen Health Data”.

Keynote speaker

Rhian Touyz

Clinician-Scientist

Speaker

Dr Touyz, MBBCh, PhD, FRCP, FRSE, FMedSci, is the Executive Director and Chief Scientific Officer of the Research Institute of the McGill University Health Centre (RI-MUHC). She is the Canada Research Chair in Cardiovascular Medicine and Dr Phil Gold Chair in Medicine, McGill University, Montreal. She is also the British Heart Foundation (BHF) Emeritus Chair. She served 10 years as the Director of the Institute of Cardiovascular and Medical Sciences and BHF Chair of Cardiovascular Medicine, University of Glasgow, Scotland, UK. In 2021 she was recruited to Montreal to direct the RI-MUHC. Dr Touyz, a clinician-scientist focusing on molecular mechanisms of hypertension, received her BSc(Hons)(1980), MBBCh(1984), MScMed(1986) and PhD(1992) in South Africa. She completed her post-doctoral fellowship at the Clinical Research Institute of Montreal and was the Canada Research Chair in Hypertension, University of Ottawa (2005-2011). She is an elected Fellow of the Academy of Medical Sciences, Royal Society of Edinburgh, College of Physicians, and Canadian Academy of Health Sciences. She has received numerous awards, including the Hypertension Research Excellence Award from the AHA, the highest honour in the field. Dr Touyz is the editor-in-chief of Hypertension. She contributes to best clinical practice and co-chairs the 2024 European Society of Cardiology hypertension guidelines. She held leadership roles in premier organizations: President, Canadian Hypertension Society; Chair, Hypertension Council (AHA); President, International Society of Hypertension and Chair, European Council of Cardiovascular Research. She is a strong advocate of equal opportunities for all in academia and research. She founded the ‘Women in Hypertension Research Program’ of the International Society of Hypertension and led the Sliver award Athena Swan program at the Institute of cardiovascular and Medical Sciences, University of Glasgow. She has spearheaded numerous mentoring schemes for early and mid-career researchers. She has published 647 papers [h-index:145]. She has an interest in translational research where her discovery science impacts care of patients with hypertension and cardiovascular disease. Her particular areas of interest include: 1) vascular signaling and redox biology; 2) the renin-angiotensin-aldosterone system; 3) adipose biology and cardiometabolic disease; 4) cardiovascular toxicity of anti-cancer drugs, 5) small vessel disease and vascular dementia, 6) pathophysiology and management of human hypertension.

Silvana Loffredo

Caregiver partner

Panelist

Silvana Loffredo is the Senior Project Manager of the Opal Health Informatics Group. She has over 20 years of experience in project management and has demonstrated exceptional skills across various industries. Over recent years, she has collaborated closely with McGill University Health Centre (MUHC), Jewish General Hospital, and St. Mary’s Hospital in Montreal. A devoted mother of three, Silvana has successfully balanced a demanding career with her responsibilities at home. She spent seven years as the primary caregiver to her daughter during her courageous battle with cancer. This personal journey profoundly shaped Silvana’s professional path, fueling her passion for enhancing cancer care and patient outcomes. Currently, Silvana applies her knowledge and personal commitment to healthcare as the Senior Project Manager of the Quebec SmartCare Consortium (QSCC) at the Research Institute of the MUHC. The QSCC aims to empower patients by providing them access to their healthcare data. Silvana's unique combination of professional expertise and personal dedication ensures she delivers the highest standards of project management.

Holly Witteman

Researcher and patient

Holly Witteman holds the Canada Research Chair (Tier 2) in Human-Centred Digital Health. She is a Professor in the Department of Family and Emergency Medicine at the Faculty of Medicine at Université Laval and a Scientist at the VITAM Research Centre for Sustainable Health and Research Centre of the CHU de Quebec. Trained as a human factors engineer, she applies her expertise in design methods to develop and evaluate digital health tools that help patients and clinicians understand scientific data and make evidence-informed decisions that align with what matters to the people affected by the decisions.

Panelist

John Kildea

Researcher

Speaker

John Kildea, PhD, MCCPM, is a tenured associate professor of Medical Physics in the Gerald Bronfman Department of Oncology, Scientist at the Research Institute of the McGill University Health Centre, and FRQS dual chair in Artificial Intelligence and Digital Health. John’s research focuses on building software for patient-centered health informatics and experimental methods to examine the biophysics underlying radiation-induced carcinogenesis. At the RI-MUHC, John directs the research, development, and technology innovation activities for the Opal Health Informatics Group (O-HIG). The group designed, developed, clinically implemented, and operates the Opal patient portal. Opal’s technology is the centrepiece of the Quebec SmartCare Consortium, a major research project that John created and leads as its principal investigator.

Susie Judd

Patient Partner

Susie Judd works as the Development, Security, and Operations manager of the Opal Health Informatics Group. As a cancer survivor herself, Susie's personal health journey and professional background in operations, cloud and cyber security assists the Opal Health Informatics Group to provide confidence and security for Opal users.

Panelist

Cécile Petitgand

Expert in health data

Panelist

Cécile Petitgand, PhD, is the President and Founder of Data Lama, a Quebec-based company specializing in data management and AI training to promote digital democratization. Cécile Petitgand is also a data management advisor at the CHUM Research Centre and has been a consultant to the Fonds de recherche du Québec. She previously held the position of coordinator of the Data Access Initiative of the Table nationale des directeurs de la recherche of the Ministère de la Santé et des Services sociaux du Québec (MSSS). Cécile Petitgand holds a PhD in Management Sciences from the University of Paris-Dauphine and the University of Sao Paulo (Brazil), and completed her post-doctoral research at the Hub santé : politique, organisations et droit (H-POD) of the University of Montreal on the theme of AI implementation in healthcare. Cécile Petitgand also holds a master's degree in economics from the Paris School of Economics, and is a graduate of the École Normale Supérieure de Paris (ENS Ulm).

Sara Ahmed

Researcher

Sara Ahmed, PT, Ph.D., is a Professor in the Faculty of Medicine and Health Sciences, at McGill University, and a senior scientist at the RI-MUHC Center for Outcomes Research and Evaluation and the Centre de recherche interdisciplinaire en réadaptation (CRIR). She leads a research program in person-centered digital health research and is the scientific director of the BRILLIANT learning health community project (https://www.brilliant-cfi.ca), part of a network of international Living Labs, and Open Science initiatives. Dr. Ahmed conducts research aimed at improving health outcomes for individuals with chronic diseases. Her research addresses the implementation of digital health solutions and patient-centered outcomes across trajectories of care to inform clinical and health system decision-making. She is an advisor for the Implementation of Patient-Centered Outcomes for the Quebec Support Unit, and the scientific director of the FRQS Digital Health Network.

Keynote speaker

Ma'n Zawati

Researcher

Panelist

Ma’n H. Zawati (LL.B., LL.M., Ph.D. (DCL)) is an Associate Professor at McGill University's Faculty of Medicine and Health Sciences and the Research Director of the Centre of Genomics and Policy in the Department of Human Genetics. He is also an Associate Member in the Department of Medicine, the Department of Equity, Ethics and Policy and the Faculty of Law. His work is interdisciplinary, drawing together perspectives from law, ethics, genomics, and policy. His research mainly focuses on the legal, ethical and policy dimensions of health research and clinical care, with a special focus on data sharing, governance, professional liability, and the use of novel technologies (e.g., mhealth apps, WGS, WES). During COVID-19, Prof. Zawati was instrumental in setting up the ethics governance for multiple initiatives, including the Quebec COVID19 Biobank (BQC19), CGEn’s national HostSeq project and the COVID-19 Immunity Task Force. His work has facilitated access and use of data and samples across jurisdictions. He sits on the Board of Directors of Exactis Innovation and the Human Cell Atlas. Prof. Zawati has published more than 110 book chapters and peer reviewed articles in leading publications such as Nature Reviews Genetics, the Canadian Medical Association Journal, and the Journal of Law and the Biosciences. In 2022, he published his first book: “Reciprocity in Population Biobanks: Relational Autonomy and the Duty to Inform in the Genomic Era” and in 2023, he won the Kenneth Morgan Teaching Award.

Christian Chabot

Patient Partner

Since 1985, Christian Chabot has played a crucial role in the advancement of IT in Quebec. With over 30 years' experience, he is particularly appreciated for his expertise in business development. Mr. Chabot has held positions with a number of leading IT and healthcare companies, including Siemens, TELUS and IBM. His exceptional expertise in the healthcare field is deeply rooted in his own experience as a patient. Having survived two aortic valve replacements, a stroke, endocarditis, septic shock, and compartmental syndrome, he brings a unique and valuable perspective to his various collaborations and initiatives. 1. Patient-partner: As a patient who has gone through complex medical experiences, Mr. Chabot offers authentic and impactful ideas in numerous research projects and clinical initiatives, contributing to more informed and humane decision-making. 2. Ministerial projects: As a patient-partner, Mr. Chabot played a role in ministerial initiatives such as the MSSS STAT team and the APSS/CRDS project, aimed at improving the fluidity of emergencies and the prioritization of care. 3. Collaboration in research and innovation: Mr. Chabot has been a collaborator and co-author of several research projects in artificial intelligence for primary care and has authored influential publications. He has worked, among other things, on studies to promote healthy lifestyle habits and the management of hypertension. 4. Continuous improvement committees: Mr. Chabot as a patient-partner was involved in several continuous improvement committees at IUCPQ-Laval and GMF-U Quatre-Bourgeois, which contributed to the continuous improvement of the quality of care. 5. Education and clinical training: As a patient-partner, Mr. Chabot participates in the training of future physicians at Laval University (MMSII course), integrating patients' perspectives into their training, and thus enriching their understanding of patient-centered care. 6. Implementation of health technologies: Mr. Chabot has been involved in the implementation of computerized clinical records (ICN), where he has used his dual experience as a patient and information technology professional to improve communication and the efficiency of health care. 7. Academic presentations: Mr. Chabot has given several presentations on the role of the patient-partner to students of the Faculty of Medicine, Nursing and Pharmacy at Laval University.

Panelist

Justin Mallet

Health System Partner

Panelist

Justin Mallet is a Health System Partner at Roche Pharma Canada. Justin holds a PhD in cellular and molecular biology and an MBA in pharmaceutical management from Laval University. He began his career working in economic development for the life sciences industry in Quebec where he participated in the onset of several foundational initiatives for this sector such as Montreal InVivo’s early clinical research initiative (Catalis), the FRQS’s Oncopole and Québec International’s life science cluster initiative, Québec VITAE. Today, Justin leverages his experience and position in the policy and healthcare shaping team to elaborate ways to harness the strong potential of data science applications in the Canadian healthcare ecosystem: using data, from health records to real-world evidences, to enable artificial intelligence and digital health. In his spare time, you can also find Justin doing the Baby Shark dance with his son, talking about LGBTQ+ leadership and inclusive environments, or hurting himself at CrossFit.

Arrani Thambimuthu

Caregiver and Medical student

Arrani holds a Bachelor's degree in Pharmacology from McGill University and is currently in her second year of medical school at the University of Montreal. Passionate about healthcare innovation and therapeutic optimization, she has gained diverse experience in the pharmaceutical field, particularly in community and hospital pharmacies. As a hospital pharmacy student, she assessed medications considering their cost, safety, indications, and specific populations for their inclusion in the hospital formulary. During her bachelor studies, as a recipient of the Melville Bursary, she contributed to research, including the development of a new therapeutic target for C. difficile to prevent antibiotic-induced recurrences in Dr. Castagner’s lab, and the development and characterization of cardiomyocytes derived from stem cells in Dr. Nattel’s lab. She also managed several student initiatives and global health awareness programs. Currently, as a research assistant at the Goodman Pediatric Formulations Centre at CHU Sainte-Justine, Arrani is working on a study evaluating the variability in concentrations of compounded tacrolimus suspension in pediatrics, identifying real-world factors that may impact preparation quality, and addressing challenges faced by parents in administering the medication to advocate for access to a commercially available pediatric formulation that adequately meets their needs and prevents adverse effects. In parallel, she collaborates with the Opal Health Informatics Group to explore the optimization of healthcare resources. As a user of the Opal app to track a loved one’s treatments, she seized the opportunity to contribute to its improvement, offering her perspective as a medical student and caregiver.

Panelist

Cheryl-Anne Simoneau

Patient Partner

Panelist

With over 25 years’ experience in the healthcare industry have allowed me to hone my skills in patient advocacy, marketing, marketing research and sales professional. People describe me is an organized and an enthusiastic team player with a proven ability to initiate and manage change. My work has allowed me to engage, plan and initiate policy changes at the federal and provincial levels for patients in Canada with a rare form of Leukemia, Chronic Myelogenous Leukemia (CML). I have a comprehensive understanding of the drug approval process in Canada. As a patient with lived experience of over 23 years I can offer valuable insight to patient needs and care gaps. I have traveled the world extensively during my patient advocacy and marketing career and have developed a comprehensive level of knowledge in patient advocacy.

Geneviève Lavertu

Medtech industry representative

Geneviève Lavertu, LLB, BCL, MSc, is the Director, Government Affairs and Policy at Johnson & Johnson Medical Technology in Canada. She is a senior executive in the health technologies sector, who prior to joining J&J MedTech was a consultant with life sciences companies, advising on their commercialization strategy. She was previously in various senior roles on the leadership team of Medtronic Canada, including as Senior Director of Medtronic Care Management Services, head of Legal, Scientific Affairs and Business Development. She was previously general counsel and corporate secretary of ProMetic Life Sciences (now Liminal BioSciences), following a successful law practice with Stikeman Elliott LLP in mergers and acquisitions, competition and commercial law specializing in information technology, energy and life sciences sectors. Ms Lavertu is a lawyer in Ontario and Quebec, a MSc graduate in Political Economy from London School of Economics and Political Science (London, UK) and a graduate of France’s École Nationale d’Administration (ENA), now the National Institute of Public Service (INSP).

Panelist

Eva Villalba

Patient advocate and VBHC expert

Panelist

Eva Villalba, M.B.A., MSCHCT, is the Executive Director of the Quebec Cancer Coalition, an influential Canadian non-profit patient advocacy group dedicated to improving the Quebec health-care system for people affected by cancer. Since 2008, she has been involved in health-care charities, advocacy groups and non-profits. She graduated from McGill University with a double major in Psychology and Applied Linguistics, then completed an MBA from HEC Montréal with the objective to apply best business practices to the public & non-profit sector. Eva is passionate about good governance, public policy, community impact, health-care reform and social innovation. She is a volunteer board member of the Artificial Intelligence Impact Alliance (AIIA) and sees great potential in applying AI and technological innovations to the health-care sector to prevent and improve health outcomes. Eva is the first Quebecker and Canadian to obtain a graduate degree in Value-Based Health Care (VBHC) with an MSc. in Health Care Transformation at the University of Texas at Austin. Eva has an extensive international network of Value-Based Health Transformation Leaders, has a VBHC Green Belt Certification from VBHC Center Europe and is their official Canadian Ambassador. She is also the co-chair of the Resilient Healthcare Coalition (RHC), a diverse group of health system leaders across the public, private, and non-profit sectors committed to helping Canadian health care systems enhance patient care and improve health outcomes by becoming faster, nimbler, and better able to adapt to future shocks. Eva is a fierce patient advocate and believes strongly in the potential of the Quebec health-care system to be a world-class leader in Value-Based Health Care (VBHC).

Lawrence Rudski

Clinician-Scientist

As a dedicated clinician, Dr Lawrence Rudski derives his greatest work satisfaction sitting and talking to patients, their families and the organization’s and network’s members – from “sur le terrain” to the c-suite. Lawrence Rudski serves the Chief of Cardiology and the Director of the Azrieli Heart Center at the Jewish General Hospital and CCOMTL. He is a Professor of Medicine at McGill University. He studied at McGill University and completed a clinical and research Fellowship at the Massachusetts General Hospital and Harvard University, specializing in cardiac imaging with a research focus in ischemic mitral regurgitation and novel therapies. More recently, he completed leadership training in Quebec’s PNDL program (PDG/PDGA) and at the T.H. Chan Harvard School of Public Health. Dr Rudski has served on the Board of Directors of the American Society of Echocardiography, the Board of Governors of the American College of Cardiology, the Council of the Canadian Cardiovascular Society, and as the President of the Canadian Society of Echocardiography. He has authored over 110 original manuscripts with over 30,000 citations and 20 book chapters. He Chaired the first international guidelines document on echocardiographic assessment of the right heart and is an imaging expert on the right heart, with a focus on pulmonary hypertension. In building the Azrieli Heart Center, Dr Rudski created a unified patient-centered care model, with the unit, its cross-functional team and its flow designed around the patient trajectory as they pass through the cardiology and cardiac surgery phases of care right through to an award-winning cardiac rehabilitation program. The Heart Center is ranked among the top in the country with several programs among the top few in Canada and North America – all initiatives built from ideas of people on the ground. Dr Rudski served as the Chief Medical Information Officer of his network, which led to a greater experience in the use of IOT devices and augmented reality technology. With this expertise in hand, Dr Rudski co-developed the vision and deployment of a virtual care program at the JGH and CCOMTL, with the flagship Hospital@Home program, awarded provincial, national and international prizes for value-based healthcare. He has also leveraged this expertise to create innovative tools and dashboards to improve organizational awareness and performance around cardiovascular flow.

Panelist

Steve O'Neill

Clinician

Keynote speaker

Steve O’Neill, LICSW, BCD, JD, is a clinical social worker and bioethicist who has taught at Harvard Medical School and Simmons University for over 40/30 years. At BIDMC, Steve oversaw most of the Mental/Behavioral Health Programs and was the Associate Director of Ethics Programs which he also helped to found. He started the first ever program making behavioral health therapist notes directly available to patients through their personal computers (2014). He has been actively teaching about OpenNotes throughout the globe, along with researching the effects of transparency within patient care, especially in mental health. He helped author the Massachusetts Crisis Standards of Care for disaster planning/pandemics, as well as NASW’s Professional Standards of Conduct and contributed to revisions of the NASW Code of Ethics. He lectures widely on clinical/organizational ethics and is the author/co-author of a numerous articles, chapters and a book on Legal Issues in Social Work (2004).

Yann Joly

Researcher

Yann Joly, Ph.D. (DCL), FCAHS, Ad.E. is the Director of the Centre of Genomics and Policy (CGP) at McGill University. He is a James McGill Professor at the Faculty of Medicine and Health Sciences, Department of Human Genetics. Prof. Joly is also an associate member of the Bioethics Unit and at the Law Faculty at McGill. He was named advocatus emeritus by the Quebec Bar in 2012 and Fellow of the Canadian Academy of Health Sciences in 2017. In 2021 he received, the Canadian Science Policy Centre, Science Policy Trailblazer Award. Prof. Joly is a member of the Canadian Commission for UNESCO (CCU) Sectoral Commission for Natural, Social and Human Sciences. He is the current Chair of the Bioethics Workgroup of the International Human Epigenome Consortium (IHEC) and Co-Lead the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health (GA4GH). He was Chair (2017–2019) of the Ethics and Governance Committee of the International Cancer Genome Consortium (ICGC). He is also a member of the Human Genome Organization (HUGO) Committee on Ethics, Law and Society (CELS). Prof. Joly’s research interests lie at the interface of the fields of scientific knowledge, health law (biotechnology and other emerging health technologies) and bioethics. He created the first international genetic discrimination observatory (GDO https://gdo.global/en/gdo-description) in 2018. He has published his findings in over 200 peer-reviewed articles featured in top legal, ethical and scientific journals. He served as a legal advisor on multiple research ethics committees in the public and private sectors. Prof. Joly also sits on editorial committees and acts as a reviewer for a wide range of publications in his field. In 2012, he received the Quebec Bar Award of Merit (Innovation) for his work on the right to privacy in the biomedical field.

Panelist

Marc-Nicolas Kobrynsky

Assistant Deputy Minister, Ministry of Health and Social Services of Quebec

Panelist

Marc-Nicolas Kobrynsky is Assistant Deputy Minister in the Strategic Planning and Performance Branch. The mission of this general directorate aims to respond to a change in the government paradigm which is reflected in the significant accountability of all government actors. It must also see to the development, updating and dissemination of tools and periodic monitoring reports as well as the production of strategic analyses, so as to facilitate the effectiveness of government decision-making. It is responsible for all consultations with partners of the Ministry of Health and Social Services in this area. Mr. Kobrynsky holds a Bachelor of Business Administration with a specialization in Operations Management from HEC Montréal, and a Master of Science in Management with a specialization in Management from the London School of Economics. A manager for 18 years, he worked, between 2004 and 2018, for the Createch Bell Canada Group, then for Sun Life Canada, as a project director and senior consultant. From 2018 to 2020, he was Senior Director — Consulting at PricewaterhouseCoopers (PwC). He also held the position of principal researcher for the Bulletin of the Ministries of the news outlet L’actualité. It was in March 2020 that Mr. Kobrynsky entered the Quebec public service. He was appointed Assistant Deputy Minister at the Ministry of Health and Social Services.

Speaker Highlights Patient Data Symposium August 28 2024 (Facebook Post) (2).png

Abhinav Kalra

Executive vice-president, Canada Health Infoway

Abhinav (“Abhi”) Kalra is an Executive Vice-President at Canada Health Infoway. Abhi Kalra is a health care technology leader with extensive public-private sector experience in designing transformation strategy for the healthcare vertical and delivering large scale, complex, outcome-based, multi-year digital transformational programs across North America, Europe and Asia. In his current role with Infoway, he leads the pan-Canadian strategy to advance our connected care system through the execution of Digital Health Interoperability program, with the goal of improving the patient and provider experience and enabling Canadians with access to their health information and improved health outcomes. Prior to this, he played a key role in defining, designing and delivering first phase of Infoway’s national e-prescribing service. Abhi held key leadership roles across North America, Europe & Asia with large corporations like Shoppers Drug Mart, Oracle, and General Electric. In these roles, Abhi built long range strategy, executed large scale multi-year transformational programs, and driven revenue growth and operational efficiency by introducing new technology products and building innovative digital solutions.

Panelist

Paul Brunet

Patient Advocate

Speaker

Mr. Paul G. Brunet has had a career in public administration and has been the President and Chief Executive Officer and the media spokesperson of the “Conseil pour la protection des malades” since 1998. The Conseil pour la protection des malades is a nonprofit advocacy group in Quebec, founded in 1974 by his older brother Claude Brunet, who passed away in 1988. Admitted to the Quebec Bar Association in 1982, Mr. Brunet has also obtained a Master's degree in Public Administration. The Conseil pour la Protection des Malades (CPM) is an independent organization that fights for patients’ rights. The CPM was created in 1974 to protect users of the healthcare system and to improve the quality of services rendered. Since then, the organization has been a champion of patient dignity for the disabled, the elderly, and others who may often find themselves neglected by the healthcare system. As it nears its 50th anniversary in 2024, the CPM will have assisted thousands of citizens and users of the healthcare system while closely following the evolution of legacy institutions into their transitions to hospitals, local community service centers (CLSC in 1970), integrated health and social services centers (CSSS in 2004), and integrated university health and social services centers (CIUSSS in 2015). Thus, the CPM has developed: -Unequaled expertise and experience in the healthcare sector; and -A uniquely independent, proactive, and impactful approach that operates within the legal framework. The first Users’ Committees were created in Quebec in 1973 as a result of the efforts of CPM founder Claude Brunet. Since then, Claude's work has persisted thanks to a collaborative network of more than 150 affiliated in-patient and user committees, providing support and legal advice towards the defense and promotion of patients’ rights. The CPM will turn 50 in September 2024, and the Claude-Brunet Foundation’s achievements abound. The CPM has three hundred individual subscribers, as well as an additional two hundred healthcare user committees and residents across Quebec. But its work as a nonprofit organization demands constant funding renewal.

Denis Cormier-Piché

Organizational Patient Partner

Denis Cormier-Piché is an engaged actor who wears many hats, including that of a research partner, panelist, facilitator, exhibition curator, writer, poet, and visual artist. He has a keen interest in art generated with artificial intelligence, which he incorporates into his literary creations. A patient partner since 2017, Denis is also an active member of several digital health committees. In addition to serving on the scientific committee of the Réseau de santé numérique (RSN) of the Fonds de recherche du Québec – Santé (FRQS), he participates in the Table de santé numérique (TSN) of the Centre d’Excellence sur le Partenariat avec les Patients et le Public (CEPPP) and the committee on the Dossier de santé numérique (DSN) of the Ministère de la Santé et des Services sociaux (MSSS), where he is involved in the committee on Information Protection and Confidentiality. He also serves on the ÉDI (Equity, Diversity, Inclusion) committee at the CHUM. He participates in academic research and is currently contributing to the co-creation of a course at the Université de Montréal on the issues of aging among LGBTQ+ individuals. He is also involved in the Projet Société Inclusive, a postdoctoral project associated with the Université de Sherbrooke. In 2016, Denis became the first North American to receive an organ transplant between an HIV-positive donor and recipient, a significant medical advancement in North America for people living with HIV (PLWH). As a co-ambassador for the Fondation du CHUM's major fundraising campaign 2023-2028 and a governor of the Fondation Émergence, Denis is actively engaged in community and public health initiatives. His ongoing projects include the Capsules temporelles VIH/sida initiative, in collaboration with the Archives gaies du Québec (AGQ), aimed at honoring and preserving the memory of those affected by HIV/AIDS. At the conference, Denis will share his perspective on patient access to their data and the role of patient partners in the RSN, exploring how this perspective can enrich research and innovation in the health field for the benefit of patient well-being.

Speaker

Agenda

August 28th, 2024

08:00 am - 09:00 am

Registration & Breakfast

Atrium

09:00 am - 09:15 am

Welcome address: Dr. Rhian Touyz, Executive Director and Chief Scientific Officer, RI-MUHC

Amphitheatre

09:15 am - 10:00 am

Keynote presentation 1:

Maria Hägglund, Uppsala University, Sweden

Moderator:

John Kildea - Researcher, Opal Health Informatics Group, RI-MUHC

Amphitheatre

10:00 am - 10:40 am

Panel 1:

Patient-in-the-loop data for patient empowerment

Moderator:

John Kildea - Researcher, Opal Health Informatics Group, RI-MUHC

Panelists:

Maria Hägglund - Researcher, Uppsala University, Sweden
Steve O’Neill - Clinician and OpenNotes leader, Harvard Medical School, Simmons University, USA
Silvana Loffredo - Caregiver partner, Opal Health Informatics Group, RI-MUHC
Holly Witteman - Researcher and patient, Université Laval

Amphitheatre

10:40 am - 11:00 am

Coffee break

Atrium

11:00 am - 11:45 am

The Opal Story:

John Kildea, Prakash Panangaden, Susie Judd

Amphitheatre

11:45 am - 12:25 pm

Panel 2:

Patient-in-the-loop data and research

Moderator:

Cécile Petigand - Expert in health data, Datalama

Panelists:

Sara Ahmed - Researcher, Réseau Santé Numérique, RI-MUHC
Ma’n Zawati - Researcher, Centre of Genomics and Policy, McGill
Christian Chabot - Patient partner, Quebec
Justin Mallet - Industry partner, Roche Canada

Amphitheatre

12:25 pm - 12:30 pm

Close of morning session

Amphitheatre

12:30 pm - 13:30 pm

Lunch

Atrium

13:30 pm - 14:15 pm

Keynote presentation 2:

Steve O'Neill, Harvard Medical School and Simmons University

Moderator:

Andréa Laizner, Opal Health Informatics Group, RI-MUHC

Amphitheatre

14:15 pm - 14:55 pm

Panel 3:

Patient-in-the-loop data in the context of Value-based healthcare

Moderator:

Geneviève Lavertu - Industry partner, Johnson & Johnson Canada

Panelists:

Eva Villaba - Community advocate, Coalition Priorité Cancer au Québec
Cheryl Simoneau - Patient partner, Chronic Myelogenous Leukemia Society of Canada
Lawrence Rudski - Clinician-scientist, Jewish General Hospital, Montreal
Arrani Thambimuthu - Caregiver and Medical student, Université de Montréal

Amphitheatre

14:55 pm - 15:15 pm

Coffee break

Atrium

15:15 pm - 16:00 pm

Réseau Santé Numérique: Sara Ahmed, McGill University

Amphitheatre

16:00 pm - 16:40 pm

Panel 4:

Implementing Patient-in-the-loop data in Quebec - Next steps: legal, technical, logistical, policy

Moderator:

John Kildea - Researcher, Opal Health Informatics Group, RI-MUHC

Panelists:

Marc-Nicolas Kobrynsky - Assistant deputy minister, Direction générale de la planification stratégique et de la performance, MSSS
Abhinav Kalra - Executive vice-president, Canada Health Infoway
Yann Joly - Researcher, Centre of Genomics and Policy, McGill University
Susie Judd - Patient partner, DevSecOps manager, Opal Health Informatics Group, RI-MUHC