Webinar: Patient Centered Care and Patient Engagement
In a collaborative effort to champion patient-centric healthcare, the World Patients Alliance (WPA) and the International Council of Nurses orchestrated a groundbreaking webinar on Patient-Centered Care & Patient Engagement, held on December 1, 2023, at 9 AM EST (3 PM CEST). This virtual gathering brought together esteemed speakers and panelists who are luminaries in the realm of healthcare advocacy. The event aimed to delve into the fundamental principles of patient-centric care, emphasizing the active involvement of individuals in shaping their healthcare experiences. Notably, the distinguished speakers included Andrew Spiegel, Chair of the World Patients Alliance, and Dr. Pamela Cipriano, President of the International Council of Nurses, among others. The insightful discussions were further enriched by a panel comprising experts like Erica Burton, Laurent Chabal, Regina Kamoga, and Penney Cowan.
As we embark on this enlightening journey, our first presentation, delivered by Dr. Pamela Cipriano, President of ICN, promises to illuminate the core tenets of Patient-Centered Care and set the stage for a transformative exploration of patient empowerment in healthcare decision-making processes.
Dr. Pamela Cipriano on “Patient-Centered Care"
In her impactful presentation, Dr. Pamela Cipriano, President of the International Council of Nurses, illuminated the integral role of nurses in delivering Patient-Centered Care through Primary Health Care (PHC). Addressing an array of global health challenges, from infectious diseases to climate change effects, Dr. Cipriano underscored the necessity of a robust nursing workforce for achieving Universal Health Coverage (UHC). The presentation delved into drivers for change in the healthcare industry, emphasizing patient preferences, workforce shortages, and the imperative for integrated, person-centered care. Future roles and expectations for nurses were explored, foreseeing an expanded role in policy development, advocacy, and technological utilization for enhanced patient outcomes. Dr. Cipriano candidly addressed challenges faced by nurses, including resource constraints and cultural factors, acknowledging their impact on delivering person-centered care. Making a compelling case for person-centered care, the presentation advocated a transformative shift from an illness-based to a well-being-focused system, emphasizing what matters to patients. Success stories from around the world showcased nurse-led interventions that significantly improved healthcare outcomes, illustrating the potential of nursing in driving positive change. The presentation concluded with the ICN’s Charter for Change, outlining vital policy actions to create responsive and accessible healthcare systems, positioning nurses as vital contributors to global health. Dr. Cipriano’s presentation serves as a rallying call for a patient-focused healthcare paradigm, echoing the need to value and empower nurses in building sustainable and impactful healthcare systems worldwide.
Following Dr. Pamela Cipriano’s insightful discourse, the webinar seamlessly transitioned to the second presentation, where Lisa Morrise, the Executive Director of Consumers Advancing Patient Safety, delved into the intricate landscape of Patient Engagement, shedding light on its multifaceted nature and the pivotal role it played in fostering collaborative healthcare relationships.
Lisa Morrise on “Patient-Centered Care and Patient Engagement”
Lisa Morrise, Executive Director of Consumers Advancing Patient Safety, delivered a comprehensive presentation on Patient Centered Care and Patient Engagement, shedding light on essential concepts and practices within the healthcare domain. According to the Institute for Patient and Family Centered Care, Patient Centered Care encompasses core concepts spanning collaboration, respect and dignity, information sharing, and active patient participation. Morrise emphasized the significance of collaboration in policy, program development, facility design, and care delivery. Patient engagement, described as both a process and behavior, establishes mutual accountability between patients and healthcare providers. Morrise highlighted diverse factors influencing engagement, including demographic characteristics, culture, health literacy, and power distance. The presentation underscored the impact of illness severity, the role of care coordinators, and the knowledge and attitudes of healthcare professionals on patient engagement. The speaker stressed the importance of transparency, effective communication, and education for both healthcare professionals and patients. Addressing engagement considerations, Morrise advocated for inclusivity in patient advisory councils, incorporating diverse backgrounds to enhance healthcare’s ability to engage with the entire community. Overall, the presentation provided valuable insights into fostering patient-centered approaches and effective patient engagement strategies within the healthcare landscape.
As the webinar unfolded, the enlightening presentations paved the way for dynamic panel discussions right after Lisa Morrise’s insightful exploration of Patient Engagement. Engaging experts such as Erica Burton, Laurent Chabal, Regina Kamoga, and Penney Cowan, the panel dissected the nuances of patient-centered care and empowerment, adding depth to the rich tapestry of healthcare dialogue. The concluding segments witnessed a comprehensive wrap-up led by Howard Catton, CEO of ICN, who encapsulated the key messages derived from the profound insights shared by the distinguished speakers. The event’s conclusion marked not just the end of a webinar but a significant milestone in the journey toward patient-centric healthcare, leaving participants inspired and armed with the knowledge to contribute actively to reshaping the future of healthcare.
Speakers and Panelists
Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance, now the leading US based national patient advocacy organization dedicated to colon cancer. Mr. Spiegel, an attorney, besides being a co-founder of the organization and longtime board member of the Alliance became CEO in January of 2008 and he ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA). Currently, Spiegel is co-founder and executive director of the GCCA, an international patient advocacy organization. This organization is an international community of nearly 50 colon cancer patient advocacy organizations and stakeholders dedicated to end the worldwide suffering of the 3rd leading cause of cancer deaths. In addition to his work in the colon cancer community, Spiegelis an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy. Spiegel is a 1986 graduate of Temple University in Philadelphia where he earned a Bachelor’s degree in Political Science with minors in English and Philosophy. He is a 1989 graduate of the Widener University School of Law. After working for a Philadelphia litigation firm, Spiegel opened his own law firm in 1995.
Dr Pamela Cipriano, an internationally recognised nursing leader, is the 29th President of the International Council of Nurses (ICN). Former ICN First Vice President (2017-2021), Dr Cipriano also serves as Dean of the University of Virginia School of Nursing and was President of the American Nurses Association from 2014-2018. Dr Cipriano is well known, both in her own country, the United States of America, and internationally, as a strong advocate for the nursing profession. During her over 40-year career, she has led efforts to advance the role and visibility of nurses and increase nursing’s impact and influence on policy. Dr Cipriano has also served on the Board of Directors of the American Nurses Credentialing Center and the American Academy of Nursing. She is a leader in the National Academy of Medicine’s Action Collaborative on Clinician Well-Being and Resilience, which is addressing the effects of the COVID-19 pandemic on the physical and mental health of all clinicians. She was the inaugural Editor-in-Chief of the journal American Nurse Today.
Howard was appointed the Chief Executive Officer of the International Council of Nurses (ICN) in February 2019. He is committed to ensure that ICN effectively represents nursing worldwide, advances the nursing profession, promotes the wellbeing of nurses and advocates for health in all policies. He firmly believes that nurses should be at the heart of health policy decision making and leading healthcare systems and delivery. Throughout his career Howard has worked and written extensively on issues relating to the nursing and healthcare workforce and he co-chaired the first ever State of the World’s Nursing Report. He has led ICN’s work to respond to and support nurses globally during the pandemic and has been at the forefront of advocating for the protection of and investment in the nursing profession. Howard joined ICN in April 2016 as the Director, Nursing, Policy and Programmes. His team led the development of ICN policy and position statements, working closely with WHO and other International Organisations to provide nursing advice on global health challenges and input into formal WHO and UN decision making meetings and processes. He also co-ordinated ICN Programmes and projects including Leadership development and worked closely with other Non-Government Health Organisations, civil society and private sector organisations. Howard also oversaw the development of scientific programmes for ICN events including its world congresses, held every two years. In December 2019 the Royal College of Surgeons in Ireland appointed Howard as Fellow of the Faculty of Nursing and Midwifery. Howard has also served as an elected Local Government Councillor in England and for 5 years was a Cabinet member with lead responsibility for corporate and customer services. During this time, he also worked on several Public Health, Community development, safety and wellbeing initiatives.
Lisa Morrise (pronounced “Maurice”) serves as Executive Director of Consumers Advancing Patient Safety or CAPS. CAPS promotes collaboration between clinicians and patients and their caregivers. Morrise has served as Patient Co-Lead on United States Centers for Medicare and Medicaid Services (CMS) projects including the CMS Partnership for Patients, that project’s Medication Management & Safety Affinity Group, and the CMS Transforming Clinical Practice Initiative Patient and Family Engagement Committee. She is a content expert in Patient and Family Engagement implementation and in Person- and Family-Centered Care and has presented extensively on these and related topics. Morrise’s article Training Patient and Family Storytellers and Patient and Family Faculty was published in the Summer 2013 Permanente Journal. Morrise graduated from the University of Kansas with B.S., Journalism, and M.A., Broadcast Management, degrees. She was named the Outstanding Broadcasting Student of the year by the National Association of Broadcasters and worked for many years in broadcast programming and marketing. Morrise has three grown children, each of whom had complex needs, including her youngest who was born with craniofacial issues resulting in the inability to breathe or swallow. Morrise basically ran a one patient ICU in her home the many years her youngest lived with a tracheotomy. Morrise served as a member of and then the leader of the local children’s hospital Patient and Family Advisory Council. She has also served her community in many positions, including as a member of the Boards of Directors of the Early Intervention Program, Big Brothers and Big Sisters, a local hospice initiative and as Salt Lake City School District Parent Teacher Association President. Morrise enjoys living with her rescue dog Gen, who, like her youngest child, has a floppy trachea.
Specialised Stoma Nurse and UAS Lecturer, Ensemble Hospitalier de la Côté and Geneva School of Health Science. Laurent Chabal is a WCET® member since 2004. He has the great honor and responsibility to become the WCET® President 2022-2026. He has been the WCET® Swiss International Delegate from 2009 to 2013. He is member of the WCET Education Committee since 2010 and has joined the WCET® Executive bord since 2014 as the WCET® Publications & Communications Committee Chairperson, Vice-President 2018-2020 and President-Elect 2020-2022.
Regina Mariam Namata Kamoga is an Executive Director, for Community Health and Information Network (CHAIN) for Uganda,an organization that promotes the empowerment of people living with,and affected by,HIV and AIDS and non-communicable diseases. Ms. Kamoga has served on numerous health advisory committees and boards at the national and international level, and she is a past board member of International Alliance of Patients Organizations (IAPO) amongst others. Ms. Kamoga works on patients’rights, particularly the rights of persons with HIV/AIDS,TB, malaria and non-communicable diseases, and capacity building for NGOs and community based organizations on governance and policy issues,health literacy and access. Ms. Kamoga’s work involves building and strengthening networks in collaboration with other organizations at the international, national and community level to address issues of patient safety and patient-centered healthcare.
Erica Burton, RN, BScN, MPH, GCNC, (she/her) is a Registered Nurse and a Certified Global Nurse Consultant. She works to develop ICN policy on a wide range of issues including the health workforce, gender equality, NCDs, communicable disease, and climate change and works closely with a variety of stakeholders to provide guidance on nursing and global health challenges. Erica also works in a clinical capacity, providing primary patient-centred care for individuals living and dying with HIV/AIDS in Toronto, Canada. Her past work includes occupational health with Médecins Sans Frontières (MSF) during the 2014 Ebola outbreak and as a Public Health Nurse in sexual and reproductive health and safer substance use, with a focus on HIV/AIDS and Hep C case management and policy. Erica holds a Master’s in Public Health from the London School of Hygiene and Tropical Medicine.
Penney Cowan In 1980 Penney Cowan founded and is CEO of the American Chronic Pain Association (ACPA). Ms. Cowan is a recognized speaker advocating a multi-disciplinary approach to pain management. She has been an outspoken advocate and consumer representative for pain issues, contributed to numerous books, videos and Websites, consulted on the development of several pain management programs, issues and received numerous awards from organizations, such as the Institute for Public Service, American Pain Society, and American Academy of Pain Medicine. She served as Consumer Representative for the FDA/CDER Anesthetic and Analgesic Drug Products Advisory Committee (AADPAC); Interagency Pain Research Coordinating Committee (IPRCC) of the National Institute of Health; and Co-chair of the National Pain Strategies Public Education and Communication Working Group, part of the IPRCC. Ms. Cowan is the author of Patient or Person, Living with Chronic Pain. She has also written all manuals and materials used by the American Chronic Pain Association. She successfully established September as Pain Awareness Month in 2001.
Hussain Jafri is the Executive Director of World Patients’ Alliance. He is also the Secretary General of Alzheimer’s Pakistan, the national association of Alzheimer’s disease and related dementias that Hussain founded in 1999 as a result of his experiences as a care giver for his grandfather with Alzheimer’s Disease. He has been very active in the field of patient safety and has remined the Vice Chair of Advisory Group of WHO’s Patients for Patients Safety Program (PFPS). Hussain has also founded Pakistan Patient Safety Initiative and has been working towards several patient safety initiatives. The Government of the Punjab has also nominated him the Provincial Focal Person on Patients Safety & Quality and given the responsibility of developing patients safety and quality services in the health sector of the Punjab province. He has remarkable experience of working as a volunteer in the social sector and has had an opportunity of working with government, national and international non-profit organizations. Hussain is also a member of the Person and Family Centred Advisory Council (PFCAC) of International Society for Quality in Health Care (ISQua). Moreover, he is also a taskforce member of Global Alliance of Partners for Pain Advocacy (GAPPA). He is an experienced speaker and a resource person and has been presenting nationally and internationally on different issues like patient safety, patients centred healthcare, care giving, advocacy, partnership in health, organizational development, etc. Hussain is a PhD from University of Leeds, UK on prevention of genetic disorders. He is currently working as the Deputy Project Director of Punjab Thalassaemia Prevention Programme and has published several publications in international indexed journals.