Background reading for June 25, 2013 CQCO-CCO Programmatic Review ENVIRONMENTAL SCAN: Patient & Family Experience June 2013 Jennifer Stiff, Senior Policy Advisor, Nicoda Foster, Policy Research Analyst, and Brittany Speller, Co-Op Student, with guidance from Rebecca Anas, Director, Cancer Quality Council of Ontario and the Programmatic Review Steering Committee and Working Group. Report prepared by the Cancer Quality Council of Ontario (CQCO) as a backgrounder to international trends in patient experience systems, and to inform the joint CQCO-Cancer Care Ontario (CCO) review of the CCO Patient Experience Program. For citation: Stiff J., Speller B., Foster N. & Anas R. (June 2013) The Cancer Quality Council of Ontario Secretariat with input from the ad hoc working group and steering committee. Environmental Scan: Patient and Family Experience.
Table of Contents Executive Summary... 4 1. Background... 5 1.1 Cancer Quality Council of Ontario... 5 1.2 CQCO 2013 Programmatic Review: Main Components... 7 1.3 Methodology of Research... 7 1.4 Why Patient and Family Experience... 9 2. Defining Patient-Centred Care, Patient Engagement and Patient Experience... 10 2.1 Defining Patient-Centred Care... 10 2.2 Defining Patient Engagement... 13 2.3 Defining Patient Experience... 15 2.4 How the Terms Relate... 15 3. Patient-Centred Care - What makes an interaction or organization patient-centred?... 16 3.1 Attributes of Patient-Centred Care... 17 3.1.1 Direct Care-Level... 17 3.1.2 Organization and System-Level... 18 3.1.3 Strategies and Facilitators... 18 3.2 Applying Private Sector Approaches... 25 3.3 Measuring Patient-Centred Care... 26 3.4 Outcomes of Patient-Centred Care... 27 4. Patient Engagement How do you engage with patients and families?... 27 4.1 Direct Patient Care Engaging patients in their own care... 28 4.1.1 Education and Literacy... 28 4.1.2 Shared Decision-Making... 29 4.2 System Level Challenges and Strategies... 32 4.2.1 Experience-based design... 37 4.3 Measuring Patient Engagement... 39 5. Patient Experience How do you measure patient and family experience?... 39 5.1 Types of Patient Experience Measures... 39 5.1.1 Patient Reported Outcomes (PROs)... 40 5.1.2 Qualitative Measures... 43 5.1.3 Timing of Follow-Up... 46 5.1.4 Using Patient Experience Measures for Quality Improvement... 49 6. Focus for June 25, 2013 Event... 51 Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 2
Appendices... 52 Appendix 1 - List of Interviewees for Environmental Scan... 52 Appendix 2 Patient- and Family-Centred Care Frameworks... 53 Appendix 3 Patient Engagement Frameworks... 57 Appendix 4 Patient Experience Frameworks... 64 Appendix 5 - Programmatic Review 2013 Steering Committee and Working Group... 67 References... 68 Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 3
EXECUTIVE SUMMARY The Cancer Quality Council of Ontario (CQCO) is an arm s length advisory group that was established in 2002 to guide Cancer Care Ontario and the Ministry of Health and Long Term Care in their efforts to improve the quality of cancer care in Ontario. Our mandate is to monitor and publicly report on the quality of cancer services in Ontario and to improve cancer system quality by identifying quality gaps and, through the use of international expertise and advice, commission special studies to address them. The CQCO Programmatic Review is one of our four key tools to achieve our mandate. The Programmatic Review brings CQCO members, CCO s Executive Team and senior staff and Ontario clinical leads together with international experts to review an existing or emerging cancer system program, analyze their effectiveness and make recommendations to CCO regarding strategic directions and improvements. We will focus these recommendations on three themes: the role of CCO in promoting patient-centred care across the cancer system, the role of the Patient Experience Program within CCO to transform to a patient-centred culture and the role of CCO to support regions to deliver patient-centred care. The Programmatic Review will identify areas of opportunity for discussion at the June 25, 2013 event, to review the progress-to-date of work on patient and family experience at Cancer Care Ontario, based on internal, stakeholder, and international input; and provide recommendations to CCO for future directions for their role in improving the patient and family experience in the province of Ontario. The objective of the environmental scan is to highlight notable trends in patient and family engagement, and experience, best practice systems and strategies around the world, and to identify the factors that make a difference in building strong person-centred systems. In this scan we review definitions for patient-centred care, patient engagement and patient experience. We view patient-centred care as the overarching concept, which includes patient engagement as a key attribute to delivering patient care and patient experience as a measure of patient centredness. Aspects of patient-centred care occur at the direct care level where the provider involves the patient in care to individualize care as well at the organization and system level. At the organization level, attributes include leadership, involvement of patients and families, supportive work environments for staff, systematic measurement and feedback, quality of the built environment, and supportive technology. We provide examples of patient-centred approaches demonstrating improvements, patient experience, health outcomes and cost reductions. We also explore the application of industry approaches such as the lean methodology as well as customer experience models. Patient engagement and activation have been called the next blockbuster drug (Dentzer, 2013). We discuss patient engagement and activation at point of care through health literacy and shared decisionmaking and at an organization and system level looking at best practices involving patients in policy planning and system improvements such as experience-based design. We also highlight some of the positive outcomes of patients engaged in their care decisions. The patient experience section focuses on measurement where we explore uses of patient reported outcomes, qualitative data and real-time data including the use of social media and on-line communities. Finally, we discuss using patient experience measures for quality improvement and the importance of established quality improvement structures for implementing patient-centred care approaches to care. Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 4
1. BACKGROUND 1.1 CANCER QUALITY COUNCIL OF ONTARIO The Cancer Quality Council of Ontario (CQCO) is an advisory group that was established in 2002 by the Ministry of Health and Long-Term Care (MOHLTC) and is quasi-independent to Cancer Care Ontario (CCO). It is set up to provide advice to CCO and the MOHLTC in their efforts to improve the quality of cancer care in the province. The CQCO is supported by a Secretariat housed within CCO. The CQCO is a multidisciplinary group of healthcare providers, cancer survivors, family members and experts in the areas of oncology, health system policy, performance measurement, health services research and health care governance. The CQCO has a mandate to monitor and report publicly on the performance of the Ontario cancer system and to motivate improvement through national and international benchmarking. The CQCO works with CCO s Board of Directors to assess cancer system performance and quality, identifying areas for improvement and advising on planning and strategic priorities. In 2010, the CQCO has expanded its mandate to include international benchmarking of cancer system performance and bringing international expertise to bear on quality improvement initiatives in Ontario. More information can be found at www.cqco.ca The CQCO Programmatic Review is one of our four key tools to achieve our mandate. The Programmatic Review brings CQCO members, CCO s Executive Team and senior staff and Ontario clinical leads together with international experts to review an existing or emerging cancer system program, analyze their effectiveness and make recommendations to CCO regarding strategic directions and improvements. CQCO Programmatic Reviews can be formative (informing an emerging program) or summative (reviewing an existing program). Diagram 1: CQCO Mission, Tools and Outcomes Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 5
The other three tools used by the CQCO are: The annual Cancer System Quality Index, an interactive web-based reporting tool that tracks Ontario s progress towards better outcomes in cancer care and highlights where cancer service providers can advance the quality and performance of care. A North American first, the CSQI was launched in 2005 and now in its ninth year, the CSQI presents overall Ontario context information including mortality and survival as well as a rolling snapshot of activity across 32 key indicators. The CSQI serves as a valuable system-wide monitor that allows us to track the quality and consistency of all key cancer services delivered across the spectrum of Ontario s cancer system, from prevention through to survivorship and end-of-life care. More details can be found at: www.csqi.on.ca An annual Signature Event that brings practice leaders, policy makers, providers, patient and family representatives together with international and national experts to provide practical solutions to address a quality gap and identify areas of opportunity to improve the quality of health services delivery within the Ontario context. More details can be found at: www.cqco.ca/events The Quality and Innovation Awards, sponsored by the Quality Council, Cancer Care Ontario and the Canadian Cancer Society, which recognize significant contributions to quality and innovation in the delivery of cancer care across the province of Ontario. More details can be found at: www.cqco.ca/awards The CQCO Programmatic Review in 2013 is a formative review focused on the Cancer Care Ontario Patient Experience Program. The CQCO Council and CCO management considers that it is timely to review the Patient Experience Program as they are currently planning their strategic priorities and discussing how to ensure patientcentredness across the organization and how to support regions to accomplish the same task. The Programmatic Review will identify areas of opportunity for discussion at the June 25, 2013 event, to deliberate on specific strategies and directions for the future. The event s objectives are as follows: Review the progress-to-date of work on patient and family experience at Cancer Care Ontario, based on internal, stakeholder, and international input; and Provide recommendations to CCO for future directions for their role in improving the patient and family experience in the province of Ontario. Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 6
1.2 CQCO 2013 PROGRAMMATIC REVIEW: MAIN COMPONENTS The CQCO 2013 Programmatic Review process has four main components: Critical appraisal via key informant interviews and Strengths-Weaknesses-Opportunities- Threats (SWOT) analysis. Answers: what has the CCO Program done so far in Ontario, what has been accomplished, what needs to change or be developed, what are the opportunities? Current state assessment Answers: what is the current state or structure of patient and family experience in Ontario? What are others doing? Environmental scan the subject of this report. Based on the gaps identified in the Critical Appraisal and Current State Assessment, the scan is a literature and best practice search, and sets the foundation or backdrop for the other inputs to the review. Answers: what are the notable trends in patient and family experience, best practice systems and strategies around the world? International Input we identify and invite approximately 3 experts to provide critical appraisals from their own countries and to help advise CCO on determining future recommendations. Answers: what have other jurisdictions implemented for patient and family experience, strengths and challenges of other patient-centred care strategies, and lessons we could learn and possibly apply to Ontario? The output of the review will be a discussion at the June 25, 2013 Programmatic Review meeting, from which a set of Recommendations will be developed for CCO and the Patient Experience Program and sent directly to the CCO s Chair of the Board of Directors from the CQCO Chair. The Patient Experience program will then determine how they will proceed to prioritize and implement the recommendations. 1.3 METHODOLOGY OF RESEARCH The objective of the environmental scan is to highlight notable trends in patient and family engagement, and experience, best practice systems and strategies around the world, and to identify the attributes that make a difference in building person-centred systems. The scan was undertaken between the months of January to May 2013. This report is intended to be a piece of foundational information for the CQCO Patient and Family Experience Programmatic Review to be held on June 25, 2013 for the purpose of considering future directions for Cancer Care Ontario (CCO) s Patient Experience Program. This environmental scan covers key trends in patient-centred care, patient engagement, and patient and family experience worldwide, with a focus on selected comparative provinces (British Columbia, Alberta, Saskatchewan, Manitoba and Nova Scotia) and countries (United Kingdom Scotland, Australia, and United States of America), seen in Box 1. We also examined materials published by healthcare improvement and research institutions, non-governmental organizations as well as academic literature with a focus on the three terms. We are particularly interested in those who Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 7
have made progress on areas of interest to CQCO and CCO, namely embedding patient-centred care across their organization; developing tools to support engagement and improve patient and family experience; and using patient experience measures for quality improvement. With advice from the Programmatic Review Steering Committee and the Programmatic Review Working Group including staff of the Patient Experience Program outlined in Appendix 5, the CQCO Secretariat contacted a handful of thought leaders around the world, and used a snowballing approach to identify additional experts. The CQCO Secretariat interviewed 26 academic leaders and staff from leading jurisdictions in this environmental scan. A list of experts interviewed has been included in Appendix 1. Box 1: Information Available from Jurisdictions Define Patient Experience and Key Initiatives in Patient Experience Frameworks Embed Patient Experience into System Design and Organizational Structure Patient Experience Measures used for System-Level Quality Improvement Patient Engagement Influences System-Level Changes and Quality Improvement Australia Alberta British Columbia Manitoba Nova Scotia Saskatchewan Denmark Netherlands New Zealand Norway Sweden United Kingdom United States Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 8
1.4 WHY PATIENT AND FAMILY EXPERIENCE The Excellent Care for All Act, which came into effect in 2010, strengthens the organizational focus and accountability of health services to provide high quality care to patients. The legislation lists a number of activities to be established starting with hospitals which include having patient and provider satisfaction surveys, conducting staff surveys and establishing a patient relations process to improve the patient experience 1. As well, the Drummond report highlighted opportunities to increase operational efficiencies and quality by having a patient-centred, coordinated and integrated system. 2 One of the quality dimensions in the Cancer System Quality Index (CSQI) is Responsive. Within this quality dimension there are a few indicators including Patient Experience measured by the NRC Picker Ambulatory Oncology Patient Satisfaction Survey and satisfaction with Cancer Care Ontario s symptom assessment tool, the Edmonton Symptom Assessment System. While other quality dimensions have a greater number of indicators to provide a more comprehensive picture of the dimension such as access or effectiveness. In 2012, the Council identified the quality of the patient s experience as a gap in the cancer system for future focus. Results from the recently released 2013 CSQI show that there has been modest improvement since 2008, seen in diagram 2 below. For example, the dimension emotional support has steadily risen a few percentage points above 50%, but is still considered too low. This document highlights how to measure patient-centred care and patient experience as well as using those measures to drive quality improvement. Diagram 2: Patient Experience Dimensions Percentage (%) 100 90 80 70 60 50 40 30 20 10 0 Patient Experience Average cancer patient satisfaction scores for outpatient care, Ontario, 2008, 2010 and 2012 Emotional support Coordination and continuity of care Respect for patient preferences Physical comfort Information, communication & education Access to care Dimension of care Report date: February 2013 Data source: Ambulatory Oncology Patient Satisfaction Survey (AOPSS) Prepared by: Cancer Care Ontario, Informatics Centre of Excellence 2008 2010 2012 CSQI 2013 Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 9
2. DEFINING PATIENT-CENTRED CARE, PATIENT ENGAGEMENT AND PATIENT EXPERIENCE Patient-centred care, patient engagement and patient experience can be described in similar ways, while also having different definitions for each. This section describes some of the definitions of these terms and how they relate to one another to provide some clarity and context for the scan. Note that when we speak about patient-centred care and patient experience, we are speaking of patients and families, and for the term family we are including any support person that the patient would identify as family. 2.1 DEFINING PATIENT-CENTRED CARE References of patient-centred care date back to the 1950s with concepts originating in the 1970s. 3 In the late 1980s, the Picker Institute and the Picker Commonwealth Program for Patient-Centred Care identified eight essential dimensions of patient-centred care and patient experience measures for each one. 3 These included access; respect for patients values and preferences; coordination of care; information, communication and education; physical comfort; emotional support; involvement of friends and family; and preparation of discharge and transitions in care. They have since been updated and are widely accepted as measurable dimensions of patient-centred care, seen in Box 2. In 2001, the Institute of Medicine (IOM) published a report, Crossing the Quality Chasm: A New Health System for the 21 st Century that included patient centredness as one of its six overarching aims, defining it as providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions. 4 Therefore, improving the patient s experience is essential to improving the overall quality of care. 5 Box 2: NRC Picker Dimensions of Patient-Centred Care NRC PICKER 8 DIMENSIONS OF PATIENT-CENTRED CARE 1. Respect for patients' values, preferences and expressed needs 2. Coordination and integration of care 3. Information and education 4. Physical comfort 5. Emotional support and alleviation of fear and anxiety 6. Involvement of family and friends 7. Continuity and transition 8. Access to care Reference: NRC Picker. Eight Dimensions of Patient-Centred Care. http://www.nrcpicker.com/memberservices/eight-dimensions-of-pcc/. Accessed May 6, 2013. Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 10
Robb and Seddon review themes of patient-centred care definitions which include informing and involving patients; eliciting and respecting patient preferences; engaging patients in the care process; treating patients with dignity; designing care processes to suit patient s needs; ready access to health information; and continuity of care. 6 The International Association of Patient Organizations highlights respect for patient needs and preferences as the most consistent element of patientcentred care. 5 Another component of patient-centred care can include prevention and health promotion relating to information and self-care. 7,8 The Economic and Social Research Institute examined patient-centred care for underserved populations and identified additional components for those populations. The first is socio-cultural competence, which includes understanding and considering the patient s culture, socioeconomic background, and literacy and the second is community outreach, which consists of proactively reaching out to the local community. 9 Specific to cancer, the Canadian Partnership Against Cancer describes patient-centred care as a comprehensive, coordinated, individually focused cancer system that responds to the full range of needs of all Canadians and their families through all stages of the cancer experience. 10 Our environmental scan found definitions of patient-centred care for Australia, United Kingdom and Saskatchewan, seen in Box 3, which also share similar themes. One of the most widely accepted definitions of patient-centred care is from the Institute for Patientand Family-Centred Care who views it as an innovative approach to the planning, delivery and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients and families. 11 Characteristics include treating people with dignity and respect; health care providers communicating and sharing complete and unbiased information with patients and families in ways that are affirming and useful; patients and family members building on their strengths by participating in experiences that enhance control and independence; and collaboration among patients, family members and providers in policy and program development and professional education as well as delivery of care. 3 Much of the vocabulary surrounding patient-centred care definitions focus on the involvement of patients and families, but are not prescriptive in the area of decision-making. Howie et al., highlights the goal is appropriate involvement of patients in care decisions, while Stewart notes that it is a misconception that care decisions must involve patient participation, but should account for the patient s desire for information and respond appropriately. 7,12 Berwick suggested IOM s definition be revised to the experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one s person, circumstances, and relationships in health care. 13 These ideas relate to respecting patient s preferences, needs and values described in the definitions. An aim of patient-centred care is to acknowledge and value each patient s own way of perceiving and experiencing what is happening to them. 14 Person-centred care is another term that is frequently used in lieu of patient-centred care, which in addition to the dimensions already discussed, takes a more holistic and individual approach, aiming to get to know the patient as a person as well as the patient s own experience of health. 15,16 Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 11
It should be noted that Marshall et al. undertook research on patients views of patient-centred care and found that there was a lack of familiarity with the terminology and suggested it was jargon used by health professionals. When asked what the terms meant to them, themes from the conversations included being involved; having attentive staff; and free flow of communication and respect. 17 Box 3: Definitions of Patient-, Family- and Person-Centred Care from Jurisdictions PATIENT-/FAMILY-/PERSON-CENTRED CARE Cancer Care Ontario s Definition Patient and Family Centred Care is an approach to the planning, delivery, and evaluation of healthcare that is grounded in mutually beneficial partnerships among health care providers, patients, and families, which results in better health outcomes, wiser allocation of resources and greater patient and family satisfaction. *Adapted from the Institute for Patient and Family-Centred Care Australia Health care that is respectful of, and responsive to, the preferences, needs and values of patients and consumers. The widely accepted dimensions of patient centred care are respect; emotional support; physical comfort; information and communication; continuity and transition; care coordination; involvement of family and careers; and access to care Reference: Australian Commission on Safety and Quality in Health Care. Patient-centred care: Improving quality and safety by focusing care on patients and consumers: Discussion paper: Draft for public consultation. http://www.podiatrywa.com.au/news/146-patient-centred%20care%20paper%20-%20web.pdf. Published September, 2010. Accessed April 1, 2013. Patient-centred care considers patients cultural traditions, their personal preferences and values, their family situations, and their lifestyles. It makes patients and their families an integral part of the care team who collaborate with health care professionals in making clinical decisions. Patient-centred care provides an opportunity for patients to decide important aspects of self-care and monitoring. Patient-centred care ensures that transitions between providers, departments, and health care settings are respectful, coordinated, and efficient. When care is patient centred, unneeded and unwanted services can be reduced. Reference: Australian Government, Cancer Australia. Glossary, Patient-centred care. http://canceraustralia.gov.au/affectedcancer/cancer-types/gynaecological-cancers/ovarian -cancer/about-ovarian-cancer/glossary#p. Accessed April 1, 2013. Canada Patient and family centred care is about providing respectful, compassionate, culturally responsive care that meets the needs, values, cultural backgrounds and beliefs, and preferences of patients and their family members in diverse backgrounds by working collaboratively with them. It is grounded in mutually beneficial partnerships among patients, families and healthcare providers. Reference: Saskatchewan Ministry of Health. Patient and Family centred Care in Saskatchewan: A Framework for Putting Patients and Families First. http://www.saskatoonhealthregion.ca/about_us/documents/cfcc_framework_moh.pdf. Published June 28, 2011. Accessed April 7, 2013. United Kingdom Person-Centred Care- providing care that is responsive to individual personal preferences, needs and values and assuring that patient values guide all clinical decisions. Reference: NHS Education for Scotland. Enhancing Person-centred Care. http://www.effectivepractitioner.nes.scot.nhs.uk/media/250607/learning-activities-enhancing%20personcentred.pdf. Accessed April 15, 2013. Person-Centred Care- sees patients as equal partners in planning, developing and assessing care to make sure it is most appropriate for their needs. It involves putting patients and their families at the heart of all decisions. Reference: The Health Foundation Inspiring Improvement. Person-centred care. http://www.health.org.uk/areas-ofwork/topics/person-centred-care/person-centred-care/. Accessed March 3, 2013. Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 12
2.2 DEFINING PATIENT ENGAGEMENT Many definitions for patient engagement focus on engaging patients in their own care. Both the Centre of Advancing Health and the King s Fund view patient engagement as actions individuals take in their care and treatment. 18,19 These definitions would be contained within the first level of engagement, based on a Multidimensional Framework for Patient and Family Engagement, where the first level, direct care, integrates patients values, experiences, and perspectives related to managing the patient s health. 20 The second and third levels describe engagement at the organization and system level and do not pertain to the outcomes of an individual. The second level is organizational design and governance where engagement integrates patients values, experiences and perspectives into the design and governance of health care organizations and the third level is policy making, which focuses on developing, implementing, and evaluating policies and programs. 20 A review of patient engagement definitions by Gallivan et al. concluded that there was a lack of consistent definitions and terminology used due to the complexity of the term. 21 Coulter s definition of patient engagement, however, is widely acknowledged and covers the different levels of engagement and focuses on the relationship between patients and providers as they work together to promote and support active patient and public involvement in health and healthcare and to strengthen their influence on healthcare decisions at both the individual and collective levels. 22 Other examples of patient engagement definitions adopted by jurisdictions are listed in Box 4. Patient engagement is considered to be the broader concept comprised of activation, the patients willingness and ability to take independent actions to manage their health and care ; the interventions designed to increase activation and the patients resulting behaviours. 23 The Canadian Partnership Against Cancer s definition highlights that patients involvement depends on the patients needs, preferences and abilities. 10 Activation can be thought of as an aspect of engagement. Another similar aspect is the individual s performance of specific behaviours such as self-management and health promotion. 24 The final aspect is health care encounter behaviours, which refers to patients being self-advocates and effectively communicating with providers to obtain information. 24 Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 13
Box 4: Definitions of Patient Engagement from Jurisdictions PATIENT ENGAGEMENT Cancer Care Ontario s Definition Patient engagement is working together with patients, family members, professionals and community groups to plan, deliver, and evaluate health services. Engagement involves building strong, sustainable partnerships and relationships, and actively engaging stakeholders in meaningful dialogue to drive system change and create the best health systems in the world. Australia Consumer Engagement- Health consumers being involved in their own healthcare and treatment and in the planning and developing of health policies and service planning, implementation and evaluation Reference: Health Consumers Queensland. Consumer and Community Engagement Framework. http://www.health.qld.gov.au/hcq/publications/consumer-engagement.pdf. Published February 2012. Accessed April 11, 2013. Canada Patient (and Family) Cancer Engagement-Patient (Family) involvement and participation in processes through which they integrate information and professional advice with their own needs, preferences and abilities to optimize health Reference: Canadian Partnership Against Cancer. Pan-Canadian Patient Experience Measurement Framework. http://www.partnershipagainstcancer.ca/wp-content/uploads/patient-exp-measurement-framework-dec2012.pdf. Published December, 2013. Accessed April 1, 2013. Patient and Public Engagement- Patients are partners in care when they are supported and encouraged to participate: in their own care; in decision making about that care; at the level they choose; and in redesign and quality improvement in ongoing and sustainable ways. Reference: Integrated Primary and Community Care Patient and Public Engagement Framework (2011). http://www.cfhifcass.ca/libraries/researcher_on_call/ipcc_ppe_framework.sflb.ashx. Published April, 2011. Accessed April 2, 2013. United Kingdom Patient Engagement- Engagement in one's own health, care and treatment Reference: Parsons S, Winterbottom A, Cross P, Redding D. The quality of patient engagement and involvement in primary care. The King s Fund. http://www.kingsfund.org.uk/sites/files/kf/field/field_document/patient-engagement-involvement-gpinquiry-research-paper-mar11.pdf. Published 2010. Accessed April 23, 2010. Patient and Public Engagement- active participation of patients, carers, community representatives and groups and the public in how services are planned, delivered, and evaluated. It is broader and deeper than traditional consultation. It involves the ongoing process of developing and sustaining constructive relationships, building strong, active partnerships, and holding a meaningful dialogue with stakeholders Reference: Cambridgeshire Community Services, National Health Service Trust. A Staff Guide to Involving Service Users, their Carers and the Public in Cambrideshire Community Services NHS Trust. http://www.cambscommunityservices.nhs.uk/linkclick.aspx?fileticket=203edoz7ils%3d&tabid=307&mid=1151&language=en- US. Published March, 2010. Accessed April 23, 2013. United States Patient Engagement- Actions individuals must take to obtain the greatest benefit from the health care services available to them Reference: Center for Advancing Health. A New Definition of Patient Engagement: What is Engagement and Why is it Important? http://www.cfah.org/file/cfah_engagement_behavior_framework_current.pdf. Published 2010. Accessed April 3, 2013. Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 14
2.3 DEFINING PATIENT EXPERIENCE The definition of patient experience used by Cancer Care Ontario is modified from a definition originating from the Beryl Institute which states patient experience is the sum of all interactions, shaped by an organization s culture, that influence patient perceptions across the care continuum. 25 Similarly, but with a cancer specific focus, the Canadian Partnership Against Cancer s definition of patient experience is the sum of an individual s perceptions, expectations and interactions related to his/her health and care throughout the cancer journey. 10 The definitions comprise all the touch points along the patient journey as the patient interacts with the institution providing care. The Beryl Institute describes the influence of the organization s culture as an important component when implementing models of patient-centred care, which is discussed in greater detail later in this document. Other definitions go further to break down the interaction into direct and indirect, as well as clinical and non-clinical, with patient perceptions and expectations measured to the organization s performance. 26,27 Box 5 lists patient experience definitions used by organizations in Australia, Canada and the United Kingdom. Many definitions of patient experience focus on the experience as a measure whether qualitative or quantitative reflecting the patient s perception of care. The Picker Institute dimensions of patientcentred care in Box 1 are quantifiable components contributing to the patient s experience. Patient experience has been viewed as administrative information collected through observation and opinions, reflecting the quality of care from the patient s perspective. 28 The King s Fund argues that patient experience means putting the patient and their experience at the heart of quality improvement. 29 This definition highlights the application of the patient s feedback for quality improvement activities. 2.4 HOW THE TERMS RELATE There are common themes for the definitions of patient-centred care, patient engagement and patient experience, but it is also important to understand how the terms relate to one another. Patient-centredness is a core dimension of quality health care. 30 Patient-centred care has been described as a container concept with different dimensions. 31 Silow-Carrol et al. examined the components of patient-centred care, which consisted of feedback and measurement and patient and family involvement. 9 Consequently, patient-centred care can be viewed as the overarching concept. Patient experience is a measure of patient centredness, and can be used to ensure organizations are delivering patient-centred care. 3,30 Dr. Susan Frampton, President of Planetree, noted that positive patient experiences are created from being patient-centred. 32 Although we recognize that patient experience is not solely a measure, for the purposes of our work, it is the patient s feedback that identifies areas of the system where high quality care is not being achieved for patients. When contrasting patient experience compared to engagement, patient experience is derived from perceptions of quality, while patient engagement involves actions and behaviours. 33 Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 15
Box 5: Definitions of Patient Experience form Jurisdictions PATIENT EXPERIENCE Cancer Care Ontario s Definition The sum of all interactions, shaped by an organization s culture, that influence patient perceptions across a continuum of care. *Adopted from The Beryl Institute Australia The patient perceptions of all interactions across the continuum of care (objective/factual what did or did not occur)-patient Experience Information Development Working Group, June 2012 Reference: Australian Commission on Safety and Quality in Health Care. Patient-centred care: Improving quality and safety by focusing care on patients and consumers: Discussion paper: Draft for public consultation. http://www.podiatrywa.com.au/news/146-patient-centred%20care%20paper%20-%20web.pdf. Published September, 2010. Accessed April 1, 2013. Canada The sum of an individual s perceptions, expectations and interactions related to his/her health and care throughout the cancer journey. Reference: Canadian Partnership Against Cancer. Pan-Canadian Patient Experience Measurement Framework. http://www.partnershipagainstcancer.ca/wp-content/uploads/patient-exp-measurement-framework-dec2012.pdf. Published December, 2013. Accessed April 1, 2013. United Kingdom This is feedback from patients/relatives/carers/family on what happened in the course of receiving (or having contact with) care or treatment, including objective facts and the subjective views of it. Reference: Royal Surrey County Hospital: NHS Foundation Trust. Patient Experience Update. http://www.royalsurrey.nhs.uk/default.aspx?dn=bb702150-9a89-4a77-abdc-c2290fb372c2. Published January 26, 2012. Accessed March 29, 2013. Understanding patients satisfaction with their experience of care; the compassion, dignity and respect with which they are treated. Reference: NHS Institute for Innovation and Improvement. The Experience Based Design Approach: Using patient and staff experience to design better healthcare services. http://www.hqsc.govt.nz/assets/consumer-engagement/partners-in-care- Resource-page/Experience-Based-design-Concepts-and-Case-Studies-January-2010.pdf. Published January, 2010. Accessed April 13, 2013. 3. PATIENT-CENTRED CARE - WHAT MAKES AN INTERACTION OR ORGANIZATION PATIENT-CENTRED? Patient-centred care is an important dimension of quality that has been characterized by slogans such as Nothing about me without me to place the patient as the focus of care. 34 The Institute for Health Information s Triple Aim approach, seen in Appendix 2, seeks to optimize the performance of health systems through better care experiences, improved health outcomes and lower costs, which presents major challenges to organizations. Components required by organizations responsible for achieving the Triple Aim are partnership with individuals and families and system integration including access to knowledge and evidence and measurement frameworks. 35 In this section we describe the attributes of patient-centred care at the direct care level, organization and system level, the facilitators, which Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 16
contribute to the sustainability of patient-centred care, including private sector learnings and measures. Lastly, we describe some evidence of the benefits of patient-centred care and the related cost implications. 3.1 ATTRIBUTES OF PATIENT-CENTRED CARE There are many ways of describing or grouping the attributes of patient-centred care. The Institute for Healthcare Improvement separates patient-and family-centred care into the following four levels: environment, organization, microsystem, comprising a unit for example, and the individuals care experience. 3 We have separated the attributes into the direct care level comprising of the patient, provider and the relationships and interactions at point of care and attributes at the organization and system level, which are related to the culture and policies required for the delivery of patient-centred care. 3.1.1 Direct Care-Level Fundamental attributes of patient-centred care at point of care are patient s involvement and the individualization of care. 36 Three main themes emerged from a systematic review of 60 papers which comprised of patient participation and involvement, the relationship between the patient and the health professional and the context of where the care is delivered considering issues such as time. 37 Similarly, patient-centred care is described as dependent on three factors which are informed and involved patients and families, receptive and responsive health professionals and an integrated health care environment; the latter will be explored when we describe attributes at the system level. 38 Bernabeo and Holmboe outline competencies required by the patient and the physician, which for the former include defining the preferred patient-physician relationship, articulating health problems, accessing and evaluating information and negotiating decisions, while the latter includes developing a partnership with the patient, reviewing the patient s preferences and preferred role in decision-making, presenting information and helping assess different decisions. 39 Mead and Bower outline dimensions of patient-centred care which consider the psychological aspects of the health problem and viewing both the patient and physician as people to account for the subjectivity of both individuals. 40 Greene et al. divided the dimensions at point of care into interpersonal relationships and clinical provision of care. 31 Epstein et al. argues that interactions aim to achieve shared information and deliberation resulting in a consensus approach to care. 38,41 However, it should be noted that it does not mean giving patients what they ask for, but rather communication focuses on identifying and responding to patient s thoughts and emotions regarding their illness to reach consensus about the illness, treatment, and roles for both the patient and physician. 41 Shaller summarized the key attributes from a number of patient-centred frameworks and they comprised education and shared knowledge; involvement of family and friends; collaboration and team management; sensitivity to nonmedical and spiritual dimensions; respect for patient needs and preferences; and free flow of and accessibility to information. 42 McCormack and McCance developed a person-centred nursing framework with four constructs comprised of prerequisites seen as professional competence; the care environment or context; the person-centred processes, which aim to operationalize patient-centred care such as working with patient s beliefs; and the expected outcomes, Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 17
such as patient satisfaction. 43 These four constructs cover the attributes, facilitators and results from taking a patient-centred care approach. 3.1.2 Organization and System-Level At the organization and system level, there are a number of attributes for patient-centred care, some of which could also be considered facilitators and barriers for patient-centred care, which are also discussed in this section. Patient-centred frameworks and models from leading jurisdictions and institutions are described in Appendix 2. Based on a review by Shaller on the most prominent patientcentred care frameworks the attributes contributing to patient-centred care at the organization level were leadership to ensure the strategic vision is clearly and continuously communicated; involvement of patients and families such as committees at organizational level as well as to inform policy and accreditation; caring for the caregivers through a supportive work environment; systematic measurement and feedback such as balanced scorecards and listening posts consisting of walkthroughs with staff as patients; quality of the built environment; and supportive technology, which can be accessed by patients and used to support decision-making. 42 Planetree has a Patient-/Resident- Centred Designation Program highlighted in Appendix 2, which has criteria in eleven patient-centred topics such as human interactions, family involvement, environmental design and measurement. These criteria demonstrate the use of evidence and experience based drivers and measure high quality of patient-centred care. 44 3.1.3 Strategies and Facilitators Research suggests a number of strategies at the organization and system level to encourage and facilitate a patient-centred care approach. The World Health Organization s (WHO) report, People- Centred Healthcare, outlined several strategies for organizations, which include creating a comfortable environment for people and providers; coordination of care; multidisciplinary care teams; integration of patient education, family involvement, self-management and counseling; standards and incentives for high quality, safe services; implementing new models of care; and leadership capacity to champion people-centred health care. 45 A paper for the Commonwealth Fund, Patient-centred care: What does it take?, highlighted a number of initiatives to create patient-centred care such as leadership development and training; internal rewards and incentives; training in quality improvement; and evidence-based support tools. 42 Additionally, tools and checklists have been developed as resources to help guide the implementation of patient-centred care approaches within organizations. Examples of checklists and tools from leading patient-centred organizations in Australia, Canada and the United States can be seen in Box 6. Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 18
Box 6: Patient and Family-Centred Care Tools and Checklists PATIENT AND FAMILY-CENTRED CARE Tools and Checklists AUSTRALIA Karen Luxford Patient Centred Organizational Status Checklist The checklist includes a wide variety of questions that determine the level at which organizations are practicing a patient-centred care approach. Questions within the checklist address governance; commitment to implementing and sustaining a patient-centred care approach; gathering and using data pertaining to patient experiences; and engagement of patients and families through councils and committees. Examples of questions in the checklist include: 1. Are patients and families considered partners in care? 2. Why are you collecting patient experience data? Is the data reported and who is it reported to? 3. Is there a dashboard of performance metrics monitored by the organizations, including those for patient experience and patient-centred care? Reference: Australian Commission on Safety and Quality in Health Care. Patient-centred care: Improving quality and safety by focusing care on patients and consumers: Discussion paper: Draft for public consultation. http://www.podiatrywa.com.au/news/146-patient-centred%20care%20paper%20-%20web.pdf. Published September, 2010. Accessed April 1, 2013. CANADA Kingston General Hospital Patient-Centred Leadership Checklist The patient-centred leadership approach focuses on the decision makers within organizations and ensures each decision made considers each item in the checklist. The checklist is comprised of four questions listed below: 1. Inclusion: Did I include patients in decisions that affect them? If not, did I find a way to ensure that their voice is heard? 2. Assessing: Did the questions I raised about statistics or numbers peoplize the issue, or put a face on the numbers, so that we have an understanding of what the numbers mean from a patient perspective? 3. Learning: What did a patient teach me today? This requires direct conversation with 2-3 patients a week. 4. Sharing: Have I shared a story about something that made a positive difference to the patient s experience? Reference: Thompson L. Patient-Centered Leadership Checklist: Putting it to work. http://www.kghconnect.ca/blog/patientcare/patient-centered-leadership-checklist-putting-it-towork?utm_source=longwoods+master+mailing+list&utm_campaign=fb054d3a0a- May_14_2013&utm_medium=email&utm_term=0_3ce81fccfc-fb054d3a0a-48362201. Published March 27, 2013. Accessed May 15, 2103. Stiff et al, Cancer Quality Council of Ontario Environmental Scan: Patient and Family Experience, 2013 19