Person-Centred Care and Patient Experience with Outpatient Cancer Care

Key findings

Measure	Desired Direction	As of this Report
Patient experience with outpatient care
See Methodology and Approach to find out how the ratings are calculated.

Cancer patients treated in outpatient settings continue to report a positive experience with most aspects of their care (including respect for patient preferences and physical comfort), but there remain gaps, regional inconsistencies and opportunities for improvement within certain domains (such as emotional support and information, communication and education).

Cancer Care Ontario continues to partner with patient and family advisors with diverse experiences in the cancer system in order to ensure a person-centred cancer system. Through this engagement, over 100 patient and family advisors represent diverse regions who vary by their type of cancer and experiences.

What is person-centred care, patient engagement and patient experience?

In my words Person-centred care is a partnership. We also have to understand the nurses and the doctors on the other side. They have to understand what it’s like from our side. Then we work together in a partnership. Joanne M. Patient/Family Advisor

• Person-centred care (PCC) is the evolution of patient-centred care. It recognizes that true high-quality care that has a direct impact on the patient experience requires a fundamental shift in our approach to health care.
• PCC 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, which results in better health outcomes, a wiser allocation of resources and improved patient experience¹.” The adoption of a PCC model requires a different conceptualization of how patients, family members, caregivers and health care teams are engaged and work together.
• PCC drives health care services that understand and deliver care that is responsive to the individual needs, preferences and goals of patients. This develops a more person-centred health care system where people are supported to successfully manage and make informed decisions about their own health and care. This, in turn, will drive improvements in the overall patient experience.
• One approach used to establish a person-centred model of care is patient and family engagement, which has patients, family members, health care providers and professionals working together to plan, deliver and evaluate health services².
• Patient experience has been defined as “the sum of all interactions, shaped by an organization’s culture, which influence patient perceptions and expectations across a continuum of care³.”
• In improving PCC, it is important to have insight into the cancer patient’s view of health care and their specific wishes, needs and preferences⁴. Increasingly, cancer patients want to play an active role in the care they receive⁴.

How are person-centred care, patient engagement and patient experience measured?

• In Ontario, the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) reports on dimensions of patient experience, in regards to the care received in outpatient cancer treatment settings.
• Patient experience is assessed through AOPSS, a survey that asks patients to rate and assess their care across the following dimensions:
  • emotional support;
  • continuity and coordination of care;
  • respect for their preferences;
  • physical comfort;
  • quality of information, education and communication; and
  • how well they were able to access their care.
• Each dimension has several questions related to patient care and their experience as outpatients.
• The AOPSS allows patients who have been currently receiving treatment—or those who have received cancer treatment in the last 6 months—to provide anonymous, in-depth, open-ended and personalized descriptions of their overall treatment experiences.
• More recently added to this report is the PCC indicator. Survey questions were selected to build a PCC composite indicator that is based on 3 dimensions of PCC: communication, self-management and support for shared decision-making⁵.
• This year’s Index also highlights information on patient engagement using process measures of Cancer Care Ontario’s Patient and Family Advisors such as regional representation and type of cancer.

What do the results show?

Most patients are satisfied with their experience but gaps remain.

• In Fiscal Year (FY) 2015/16, 6,954 individuals responded to the AOPSS survey, an overall response rate of 51.6%.
• Results are shown for patients responding positively to the statements.
• “Respect for Patient Preferences” (81.45%) and “Physical Comfort” (78.97%) were the highest scoring dimensions in FY2015/2016.
• Similar to previous years, “Emotional Support” continues to score the lowest (at 54.30%), followed by “Information, Communication and Education” (at 66.55%). Specific “Emotional Support” questions are reported in the Psychosocial Oncology section of the CSQI.
• Each of the 6 dimensions of care as reported by AOPSS remain constant over time from FY2013/2014 to FY2015/2016.
• Specific “Coordination and Continuity of Care” questions are reported in the Survivorship section of the CSQI.
• Regional Cancer Programs continue to implement quality improvement plans to specifically focus on these dimensions of care.

Some regional variation exists for the Person-Centred Care composite measure.

• Slight variation can be seen among composite patient experience scores among the regional cancer centres.
• Little change is present for the PCC composite within the province (70.40%) for FY2015/16 in comparison to FY2014/15 (70.94%).
• Patients from the Sault Area Hospital (77.15%) were the most satisfied with the 3 components of care: communication, self-management and support for shared decision-making. This regional cancer centre has experienced the largest percent increase (3.90%) for this composite measure from the previous fiscal year (73.25%).
• Patients from the Windsor Regional Cancer Centre (65.44%) were the least satisfied with the 3 components of care.
• The Grand River Regional Cancer Centre (72.52%) has experienced the largest percent decrease (4.25%) for this composite measure from the previous fiscal year (76.77%).

Implementation of a real-time patient-reported experience measure (PREM) in Ontario regional cancer centres.

• Patient Reported Experience Measures (PREMs) capture the patient’s perspective of his or her experience while receiving care²¹. PREMs focus on specific aspects of the care process, rather than an overall evaluation of services.
• Cancer Care Ontario developed a real-time PREM for adult oncology patients within the treatment phase, and with expansion across the care continuum. This systematically captures PREMs and drives quality improvement based on patients’ needs, wants and preferences.
• Your Voice Matters has been implemented in 12 Regional Cancer Centres in Ontario as of February 2017. Implementation of Your Voice Matters in the remaining regional cancer centres is ongoing in 2017.
• Collection of real-time PREMS ensures that local and system-level planning and quality improvement in the cancer system are rooted in what matters most to patients and their families. Your Voice Matters empowers and enables patients to share their experience immediately following their most recent visit.

Cancer Care Ontario patient and family engagement has diverse regional representation, and advisors vary by type of cancer.

• Patient and family advisors are a dynamic group of individuals who have a range of experiences with Ontario’s cancer system as patients, family members and caregivers.
• Patient and family advisors partner with Cancer Care Ontario staff to provide direct input into policies, programs and practices that affect patient care and services.
• Cancer Care Ontario has a Patient and Family Advisory Council (PFAC) made up of patient and family advisors who have made up to a 3-year commitment to be part of the Council, providing Cancer Care Ontario with partnership and advice relevant to (and based on) the patient, family member and caregiver experience.
• The Patient and Family Advisory Council has 28 members, with representation from all 14 regions in Ontario.
• In addition to the Patient and Family Advisory Council, Cancer Care Ontario’s patient and family advisor community is made up of individuals across the province who represent diverse experiences with the health care system.
• Cancer Care Ontario has over 100 active patient and family advisors across all 14 regions in Ontario.
• These patient and family advisors have diverse experiences with the cancer system and vary by disease type.

Why is this important to Ontarians?

Person-Centred Care leads to better care, outcomes and quality of life.

• The provision of whole person care as reflected in the Cancer Care Ontario Person-Centred Care Guideline is essential. Whole person care includes not only cancer treatment and physical care, but also identification of the individual’s psychosocial health needs and the resources available to support individuals in managing the emotional, practical, social and spiritual elements of their experience.
• Effective communication—including active listening, expressions of empathy and sensitivity to the experience of the person affected by cancer—has been shown to improve psychological adjustment, adherence to treatment plans and satisfaction with care^6–8.
• The patient experience has been associated with a variety of outcomes, including the following:
  • patient quality of life^9-11;
  • survival^12,13;
  • clinical effectiveness and safety¹⁴; and
  • specific outcomes (i.e. appointment adherence¹⁵, improvements in screening¹⁶ and a decrease in anxiety and depression¹¹).
• Increased patient experience has also been linked to lower health care-related costs^17-19.

Understanding patient needs and experiences with their care helps providers and staff respond to gaps.

• Looking at experience across several dimensions and types of cancer helps providers and cancer centres better direct their efforts and address gaps in patient need²⁰.

What’s next for person-centred care in Ontario?

Key implementation success factors for Your Voice Matters

• Cancer Care Ontario will continue to systematically deploy a web-based tool called Electronic Patient Reported Experience Measures (ePREM), through a kiosk- or tablet-based platform previously deployed within the Regional Cancer Centres.
• ePREM has been used to disseminate the first Patient Reported Experience Measure (PREM), called Your Voice Matters.
• Key ePREM implementation strategies include: multi-faceted communication with centre leadership (i.e. regular communication through a single point of access web page with implementation document, training tools and other recourse) and engaged implementation teams (including clinical and administrative leadership, patient, clerical staff, volunteers and more).
• As of February 2017, more than 15,000 patients province-wide have completed Your Voice Matters.
• The average completion time for Your Voice Matters is 3:26 minutes.
• Your Voice Matters will be collected on all patients in Ontario undergoing cancer treatment in real-time, creating the largest-known linkable patient-experience dataset.

Enhancing PCC through person-centred communication

• In September 2016, CCO hosted a Person-Centred Care Summit. It was a unique event bringing together patients, health care providers and administrators from the cancer and renal care systems in Ontario to collaborate and share knowledge on health system transformation through advancing PCC. At the Summit, 238 in-person attendees represented all 14 Regional Cancer Programs and 11 Regional Chronic Kidney Disease Programs. Additionally, 138 guests signed into the live stream of the event.
• The Person-Centred Care Summit helped to prioritize recommendations within Cancer Care Ontario’s Person-Centred Care Guideline. Developed in partnership with the Program in Evidence-Based Care, the Person-Centred Care Guideline is the first of its kind in Canada, and outlines a level of service that every person accessing adult oncology services in Ontario should expect to receive. By describing person-centred principles in specific terms, it enables agencies, organizations and providers to embed PCC care in their practice.
• A key area of the PCC Guideline is “Enabling patients to actively participate in their care.” Patients are enabled to be active participants in their own health care by involving them in creating and managing their health strategy and the use of services. A crucial prerequisite for self-management and self-care is effective patient-provider communication. Cancer Care Ontario will be developing initiatives that focus specifically on enhancing communication between patients, families and health care providers.

Improving equity in patient and family engagement and strengthening engagement efforts

• Patient and family advisors provide valuable contributions to our programs and initiatives through their membership on provincial program committees, working groups and project teams that span care provided throughout the province.
• Asking patient and family advisors about their experience working with Cancer Care Ontario is an important step in strengthening engagement efforts. Cancer Care Ontario has developed and launched an Advisor Experience Survey to continue promoting the evaluation of ongoing public, patient and family engagement activities. Some Regional Cancer Programs have adopted and implemented the Advisor Experience Survey within their programs. Cancer Care Ontario is working to develop an engagement measure, which will further demonstrate the value of patient and family advisors at the organizational, regional and provincial level.
• Most recent data of the Cancer Care Ontario Advisor Experience Survey (September to December 2016) indicates that the majority of patient and family advisors have the resources and support to participate as an Advisor (89.2%), have the opportunity to participate as an Advisor in a group (83.8%) and feel that their contributions will result in the improvement of a person-centred experience in the health system (78.4%).
• Cancer Care Ontario recently launched the CCO Advisor Socio-Demographic Survey to our patient and family advisor community. This survey will allow us to assess the current state of Cancer Care Ontario’s patient engagement capacity in terms of its ability to account for the diverse perspectives reflective of the unique characteristics of each patient, family member or caregiver. In doing so, we will begin to understand the potential impact of forming partnerships with community organizations and non-health-based organizations, and to develop novel patient engagement channels to ensure that opportunities for our patient and family advisor program at CCO reflects the diversity of Ontario’s population, and ensure the voice of all Ontarians is represented in our engagement programming.

Find out more

• For more information about PCC, see the Person-Centred Care: A Year in Review.
• For more information on Oncology Patient Experience Surveys, please see the Your Symptoms Matter – General Symptoms.

View Notes

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