22 Oct Citizens at the Center of Care: Best Practices for Ensuring Patient- Centered Care
CITIZENS AT THE CENTER OF CARE: BEST PRACTICES FOR ENSURING PATIENT-CENTERED CARE
Authors : Dawn Singerman (Canada, Co-chair), Rachael Spooner (USA, Co-chair), Heikki Yli-Ollila (Finland), J. Antônio Cirino (Brazil), Márcio Reis (Portugal). Reviewed by Tavy Alford (IHF, Intern)
Every day, hospitals around the world care for thousands of patients. Additionally, numerous family members are connected to the people receiving this care and are therefore impacted by the healthcare team. A constant challenge for hospital management is to develop strategies to involve patients and their families in the healthcare continuum. Including these individuals in the process provides an opportunity for improvements to the health trajectory of patients, including enhanced access to care and better adherence to therapeutic plans, resulting in better patient outcomes.
Although there is great variability in how healthcare systems are structured, managed, and funded across the globe, there are many best practices that can be shared and implemented broadly to ensure that patients remain at the center of care.
There are numerous organizations and studies that have demonstrated the benefit to patients, their families, and the healthcare establishments by having patients actively participate in their own care. Since 1992, The Institute for Patient- and Family-Centered Care (IPFCC) has been a strong advocate of “Patient- and family-centered care [which is] an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families”[i].
The IPFCC has identified four key concepts to drive patient- and family-centered care[ii]:
- Dignity and Respect. Health care practitioners listen to and honor the perspectives and choices of patients and their family. Patient and family knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of care.
- Information Sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in a way that is affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in decisions about their care.
- Participation. Patients and families are encouraged to and supported in participating in care and decision-making at the level they choose.
- Collaboration. Patients, families, health care practitioners, and health care leaders collaborate in policy and program development, implementation, and evaluation; in facility design; in professional education; and in research; as well as in the delivery of care.
HEALTHCARE STRUCTURES AROUND THE WORLD
The health system in Brazil is divided into public health and supplementary or private health. More than 70% of the Brazilian population uses the Unified Health System – SUS and the rest are private health insurance clients[iii]. The guide “Scenario of Hospitals in Brazil”[iv], published by the Brazilian Hospital Federation – FBH in 2020, shows that there are 4,198 private hospitals and 2,444 public hospitals in the country. The distribution of beds in the country, over the same period, indicates 254,982 private beds and 149,788 public beds. Private units can offer public care through contracting with the SUS, which mainly occurs in private non-profit hospitals. In terms of density, there were 1.91 beds for every thousand inhabitants in 2020. WHO estimated that worldwide there should be 3.2 beds for every 1,000 inhabitants[v], which must be analyzed from the perspective of the profile, coverage of services and habits of the population. Regarding medical demography, the projection for 2020 was 2.2 physicians per 1,000 inhabitants[vi].
Prior to World War II, health care in Canada was mainly privately funded and delivered. Over the following decades, each of the ten provinces began to develop their own model for publicly provided care, that was supported financially by the adoption of the federal Hospital Insurance and Diagnostic Services Act in 1957[vii].
The federal and provincial models continued to evolve over time, resulting in a public health care model where the individual establishments are managed at a provincial level, and the federal government’s involvement in supplying financial support, setting standards and providing oversight is defined in Canada’s Health Act.
Today, all essential medical services are available to the entire population through the public system. Supplementary services (for example, prescription drugs, dental and vision care, and medical devices such as wheelchairs) are only publicly funded for certain groups such as seniors, children, and low-income residents. For other citizens, these supplementary services are either paid for out-of-pocket, or through employer-offered health care insurance plans that are very common in Canada.
The consolidated Canadian general government (meaning the combination of federal, provincial, and local governments), spent $186.6B CAD on healthcare in 2019, representing 23.4% of total government spending, or $4,910 CAD[viii] per capita.
Public sector and specialized medical care are well organized with Finland’s healthcare system believed to be one of the best in the world[ix]. In Finland, there are 17 physicians/nurses/midwives per 1000 resident, which is one of the highest numbers in the world and on average a Finn pays 3 983 € annually for maintaining the entire healthcare system[x].
Although Finland’s health care is a functional and globally appreciated system, the patient as an individual was not previously highlighted. Previously, the patient was told what to do and what treatments he/she needed without patient input. While the statistics[xi] demonstrated that the system clearly works on treating diseases, for patient’s mental health a more personalized approach would be beneficial. The Lancet study published in 2018[xii] was mostly positive but also pointed out that Finland needs to concentrate more resources on mental health and alcoholism. It is a new way of thinking to take a more personalized approach to healthcare and to serve the patient and their personal needs when they are being provided care. To help this process, since 2014, patients have had the freedom to choose any hospital they want. This freedom is driving hospitals to invest more in comfort services, aesthetics, and smooth communications.
The Portuguese NHS is designed to provide universal and comprehensive health care. All residents in Portugal have access to health care financed mainly through taxes. Portugal spends near of 10% of the national GDP, and 2 029 € per capita on health care.[xiii] Health care delivery is based on both public and private providers. Public provision is predominant in primary care, hospital care and long-term care.[xiv]
The Portuguese NHS is organized into five health regions and aims to provide access to all effective medical services. The regional health administrations are responsible for the implementation of national health policy and coordinate all levels of health care. The reform in primary care (with a network of functional units, and family health unit as the core element) and the creation of the National Network of Long-Term Integration (including rehabilitation, social reintegration, provision of comfort and life quality) are examples of efforts to better integrate care. Nevertheless, Portugal still struggles with a system based on professional silos which require high levels of health illiteracy, which is demonstrated by the high level of emergency department visits to solve non-urgent situations.[xv] This reality has clear implications in patient access and navigation in the system, quality of care, user satisfaction, and efficiency.
In contrast to many countries, the United States functions primarily on private health insurance provided by companies. Government-backed health services are provided by the Veteran’s Affairs for current and former military service members. Medicare and Medicaid are available to provide care for the elderly (people over 65 years old) and low-income individuals with each program run by individual states. The system is fragmented, even within seemingly coordinated service programs. In addition, pharmaceutical services are frequently provided by a separate entity than the medical service insurer. The USA is known to have far more expensive care as a percentage of GDP than the rest of the world, and the gap in spending has continued to widen since the 1980s[xvi]. Part of putting citizens at the center of care is providing access to necessary services in a timely manner at an affordable price point. We cannot expect citizens to feel empowered to participate in their care if they do not understand who should provide care or have trust in the systems that facilitate that matching.
BEST PRACTICES FOR PLACING CITIZENS AT THE CENTER OF CARE
Many of the authors’ home countries have made great strides in the pillars of Dignity & Respect, Participation, and Collaboration as the way to address patient-centered care. Patient-centered care is defined by the Institute for Healthcare Improvement (IHI) as placing “the needs, desires, values, and rights of the patient at the center of their care. It seeks to partner with the patient, understanding and supporting their preferences within the boundaries of safety, evidence-based care, and available resources[xvii].” The shift to a more patient-focused, autonomous care delivery model from a paternalistic approach has been progressing slowly over the years. The concept was first introduced in 2001 by the Institute of Medicine (IOM) report Crossing the Quality Chasm[xviii], and expanded in 2012 by Dr. Michael Barry and Susan Edgman-Levitan who presented the concept of shared decision making[xix]. One of the ways to achieve greater value and improvement in outcomes is to ask not just “what’s the matter with you” but “what matters to you?”[xx]. This has become the central topic of several campaigns around the globe and is highlighted annually to strengthen how essential it is to bring people to the center of care and offer them the best possible experience from their perceptions[xxi].
A state hospital located in the central region of Brazil, Hcamp Goiânia, which is focused on assisting patients affected by Covid-19, has started the project “Affective Identity”. In addition to the traditional identification of the patient for the safety of procedures, there is a chart with informal data that contributes to the humanization of care. The topics which include “How I like to be called”, “My story” and “What brings me joy” help health professionals to develop an even greater empathy with the patient, as it goes beyond the basic information provided such as their full name to getting to know the patient’s nickname, family composition and preferences in daily life.[xxii]
Once we have a better understanding of what matters to the patients, we can begin to work within constraints to address their needs in an appropriate and attainable manner. Doctors Bodenheimer, Wagner, and Grumbach developed and tested the Chronic Care Model[xxiii] which identifies six essential elements: community resources and policies, health care organization, self-management support, delivery system design, decision support, and clinical information systems. Bringing these elements together allows for a productive interaction between a well-informed patient and a prepared care team. Decision support at the level of patient understanding and engagement will become increasingly important as people live longer with more chronic conditions. Treatment choices will have an impact on many areas of life and could have long-ranging consequences that are not in alignment with patients’ wishes if not well understood.
The Canadian Foundation for Healthcare Improvement (CHFI) has long recognized the importance and value-added of obtaining feedback from patients and their families “to better understand their experiences in order to drive improvements in the safety and quality of healthcare”[xxiv]. Since 2010, CHFI has been providing support to healthcare establishments to implement initiatives “that embed patient, family and caregiver engagement and partnerships in the design, delivery and evaluation of health services.” The McGill University Health Centre (MUHC) has worked closely with CHFI to implement best practices in Patient Partnership, and has received numerous accolades, including the 2014 Canadian College of Health Leaders Nursing Leadership Award, and recognition from Accreditation Canada for implementing certain Leading Practices [xxv].
Portugal has taken steps to manage several of the Chronic Care Model components through SNS+ Proximidade – This program includes projects to modernize the Portuguese NHS, through the integration of care, placing the person at the centre and meeting their health and social needs throughout their life course[xxvi]. A component of this is a new NHS portal with access to services, and an optimized information flow among all stakeholders and self-management health tools. It also includes a telemonitoring program after acute myocardial infarction and implementation of “vias verdes coronárias” as a pathway for faster access to hospitals with primary angioplasty. Similarly, the USA passed the 21st Century Cures Act in an effort to break down silos and ensure patients have access to their data[xxvii]. These structural changes will help patients and providers make more informed care decisions based on longitudinal data that supports more robust conversations about what is important to the patient at this point in their care journey.
In Finland, a “people’s council” is a group that is composed of individuals within the hospital district – most of the members of the council have extensive experience using the local hospital services. The main purpose of the people’s council is to share information, opinions, and experiences that can be used to improve the current health care services. The benefit to the hospital is that the council brings forth issues and subjects that the hospital management does not have access to otherwise. The people’s council forms a direct link between the hospital management, the patients and the community.
Similarly, at Northwell Health, in New York, USA, Patient and Family Councils are used to learn when opportunities were missed and what interactions went well from former and current patients and their family members[xxviii].
The MUHC has a formal “User’s Group” that is run by current and former patients and their family members. This group interacts regularly with the patient population, conducting surveys and soliciting feedback through other methods, and meet regularly with senior hospital administration to recommend improvements to the patient experience.
Example from ”What Matters to You?” Day in Norway[xxix]
It is a legal requirement for hospitals in Canada to have a Complaints Commissioner and Ombudsperson. The Ombudsperson operates independently and without interference from the hospital administration, and is responsible for supporting patients and their families in a multitude of ways, including:
- assisting patients and families to navigate the health care system
- referring patients and their families to the appropriate person within the system
- helping those with questions related to patients’ rights or concerns about care and services
- providing information on the complaint process
- providing advice on conflict resolution for patients, families and hospital personnel
- investigating patient complaints and provide conclusions
- making recommendations to improve patient care following investigation of the complaint
Following a successful pilot project in 2017, Accreditation Canada, and its affiliate Health Standards Organization, have recognized the value of having patients participate in the mandatory accreditation process for all Canadian health care providers[xxx]. It is now mandatory for patient partners to participate in the accreditation surveys and evaluations.
The next focus area is to address the aspect of Information Sharing. This pillar can be challenging to address because patients and their families have incredibly varied levels of health literacy. This can manifest as a mismatch between what the healthcare team believes has been communicated versus what the patient comprehends or can act upon. If relevant data is shared in a way that a patient cannot access the information – limited technology or internet access for digital records – or cannot understand the impact of the information – how does this impact treatment and activities of daily life – the healthcare system has not achieved its aim.
Kanta-Häme hospital district in Finland has taken digital care paths into use. The digital care path (omaraitti.istekkipalvelut.fi) is a web app which allows patients to follow up their care path in real-time. From a single view in the app, the patient can see all the steps in correct order that are typically happening during the treatment process e.g., different medical imaging studies, medical treatments, surgeries etc. There are also short descriptions and images to show beforehand what is going to happen during a certain procedure. The app updates in real-time, displaying what has happened and what is going to happen next and when. The purpose of the app is to give more information to the patients and to relive stress. Knowing exactly what is going to happen often reduces anxiety, especially when one is critically ill. Future plans for the app are more integration into the hospital visits. One could for example, register for a doctor appointment via the app and when staying longer in the hospital, order snacks or food. Currently, in some cases, the app already allows a direct chat between the patient and medical professionals.
Similarly, the MUHC Oncology department co-developed the Opal application with one of their patients as a co-lead and researcher. The app facilitates communication and information sharing between the patients and their physicians and won the top prize for excellence in the Quebec Health and Social Services network[xxxi].
Bringing patients in as partners in their care journey is critical for successful treatment and recovery. To successfully partner with patients, we recommend enhancing or enacting practices that have demonstrated success across the globe.
Ombuds programs and care navigation partners can ease the anxiety associated with significant medical procedures or hospital stays. These programs can also improve patient communication to ensure it is meeting patients at a level they can understand and make informed decisions. Assistance navigating the healthcare system will support timely care, especially when there are many steps in the selected treatment paradigm.
Similarly, Patient Partner Councils provide a feedback loop to hospitals directly. The care team is better able to see the journey through the patients’ perspective and address challenges, create processes to support information sharing, and address moments in care delivery that did not appropriately value the patient’s values or beliefs.
There is considerable literature to suggest an empowered and informed patient is able to share responsibility for their care and treatment outcomes, especially when there is not a clear, “standard” treatment[xxxii]. Designing health care to achieve this trusting, coordinated experience will require enhancements to digital information systems, care delivery systems, and a mindset shift from primary focus on acute issues to one of chronic issue controls. Restructuring care with the expectation that a patient can and desires to be a partner in their care management is a critical component to placing the citizen at the center of healthcare. Incorporating technology like video visits, remote patient monitoring, and self-scheduling creates flexibility for patients to interact with the care team in a way that fits into their schedule and lifestyle.
The authors are primarily hospital-based, which is reflected in the recommendations. As care focus continues to shift to chronic issue control, healthcare leaders will need to reflect on programs and initiatives that were successful and expand the practices to be supportive outside of hospitals in chronic care management. As healthcare leaders, we must be open to providing education and structured tools that patients can use in disease management and to become more informed about their health. This includes access to personal health information, determining who and when to share this information with, and how individuals can improve their care in the course of their daily lives.
[i] Institute for Patient- and Family-Centered Care. https://www.ipfcc.org/about/pfcc.html
[ii] Johnson, B. H. & Abraham, M. R. (2012). Partnering with Patients, Residents, and Families: A Resource for Leaders of Hospitals, Ambulatory Care Settings, and Long-Term Care Communities. Bethesda, MD: Institute for Patient- and Family-Centered Care.
[iii] Cf. https://bvsms.saude.gov.br/bvs/pacsaude/diretrizes.php
[vi] Cf. https://portal.cfm.org.br/images/stories/pdf/estudo_demografia_junho.pdf
[vii] Government of Canada. Canada’s Heathcare System. https://www.canada.ca/en/health-canada/services/health-care-system/reports-publications/health-care-system/canada.html
[viii] Statistics Canada. Summary of 2019 spending. https://www150.statcan.gc.ca/n1/daily-quotidien/201127/dq201127a-eng.htm
[ix] GBD 2016 Healthcare Access and Quality Collaborators. (2018, May 23). Measuring performance on the Healthcare Access and Quality Index for 195 countries and territories and selected subnational locations: a systematic analysis from the Global Burden of Disease Study 2016. The Lancet. Retrieved September 9, 2021, from https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)30994-2/fulltext.
[x] OECD (2020), “Health expenditure and financing: Health expenditure indicators (Edition 2019)”, OECD Health Statistics (database), https://doi.org/10.1787/92a6f9cb-en (accessed on 26 September 2021).
[xi] GBD 2016 Healthcare Access and Quality Collaborators. Measuring performance on the Healthcare Access and Quality Index for 195 countries and territories and selected subnational locations: a systematic analysis from the Global Burden of Disease Study 2016. The Lancet 2018.
[xii] GBD 2016 Healthcare Access and Quality Collaborators. Measuring performance on the Healthcare Access and Quality Index for 195 countries and territories and selected subnational locations: a systematic analysis from the Global Burden of Disease Study 2016. The Lancet 2018.
[xiii] OCDE. European Observatory on Health Systems and Policies, Portugal: Country Health Profile 2019. Ocde. Published online 2019. https://www.oecd.org/portugal/portugal-country-health-profile-2019-85ed94fc-en.htm
[xiv] Simões J de AGFAIF, Hernández-Quevedo C. Portugal: Health Systems in Transition. Health Syst Transit. 2017;30(9):1-184. https://www.dgs.pt/portal-da-estatistica-da-saude/diretorio-de-informacao/diretorio-de-informacao/por-serie-842723-pdf.aspx?v=11736b14-73e6-4b34-a8e8-d22502108547%0Ahttps://www.sns.gov.pt/wp-content/uploads/2019/10/CNCSP-Relatório-Final-2019.pdf%0Ahttps:/
[xv] Santana S, Szczygiel N, Redondo P. Integration of care systems in Portugal: Anatomy of recent reforms. Int J Integr Care. 2014;14(JUL/SEP):1-10. doi:10.5334/ijic.989
[xvi] Kamal, R., Giorlando, R., & Cox, C. (2020, December 23). How does health spending in the U.S. compare to other countries? Peterson-KFF Health System Tracker. Retrieved September 9, 2021, from https://www.healthsystemtracker.org/chart-collection/health-spending-u-s-compare-countries/#item-spendingcomparison_gdp-per-capita-and-health-consumption-spending-per-capita-2019.
[xvii] IHI Team. (2021, May 4). Sharing experiences to find better ways to improve person-centered care. Institute for Healthcare Improvement. Retrieved September 12, 2021, from http://www.ihi.org/communities/blogs/africa-sharing-experiences-to-find-better-ways-to-improve-person-centered-care.
[xviii] National Research Council. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press, 2001.
[xix] Barry, M. J., & Edgman-Levitan, P.A., S. (2012, March 1). Shared decision making – the pinnacle of patient-centered care: Nejm. New England Journal of Medicine. Retrieved September 12, 2021, from https://www.nejm.org/doi/full/10.1056/NEJMp1109283.
[xx] Cf. http://www.ihi.org/Topics/WhatMatters/Pages/default.aspx
[xxi] Federacao Brasileria de Hospitais. (2020, November 2). Hospital Manager Manual. FBH. Retrieved September 15, 2021, from http://fbh.com.br/wp-content/uploads/2020/11/2-MANUAL-FBH_ING_2019_web.pdf.
[xxii] BRASIL. Política Nacional de Humanização (National Humanization Policy). Humaniza SUS. Brasília, 2013. Disponível em: https://bvsms.saude.gov.br/bvs/publicacoes/politica_nacional_humanizacao_pnh_folheto.pdf. Acesso em 20 set 2021.
[xxiii] Bodenheimer T, Wagner EH, Grumbach K. Improving Primary Care for Patients With Chronic Illness. JAMA. 2002;288(14):1775–1779. doi:10.1001/jama.288.14.1775
[xxiv] Canadian Foundation for Helathcare Improvement. Patient, partner and caregiver engagement and partnerships. https://www.cfhi-fcass.ca/WhatWeDo/PatientEngagement.aspx
[xxv] McGill University Health Centre. Patricia O’Connor Receives Canadian College of Health Leaders Nursing Leadership Award. 2 June 2014.
[xxvi] Direção-Geral da Saúde. SNS + Proximidade. Mudança Centrada Das Pessoas.; 2018.
[xxvii] GBD 2016 Healthcare Access and Quality Collaborators. (2018, May 23). Measuring performance on the Healthcare Access and Quality Index for 195 countries and territories and selected subnational locations: a systematic analysis from the Global Burden of Disease Study 2016. The Lancet. Retrieved September 9, 2021, from https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)30994-2/fulltext.
[xxx] Accreditation Canada. Patient Patrner adds real value to survey team. June 7, 2017. https://accreditation.ca/news/patient-partner-adds-real-value-survey-team-senior-quality-advisor/
[xxxi] McGill University Health Centre. Patient empowerment app Opal wins Prix d’excellence honour. June 3, 2019. https://muhc.ca/newsroom/news/patient-empowerment-app-opal-wins-prix-d-excellence-honour
[xxxii] Eddy DM. Designing a practice policy: standards, guidelines, and options. JAMA 1990;263:3077-3084