The Person-Centred Care Guideline: From Principle to Practice.

BACKGROUND: A standardized definition and approach for the delivery of person-centered care (PCC) in cancer care that is agreed upon by all key policy makers and clinicians is lacking. The PCC Guideline defines core PCC principles to outline a level of service that every person accessing cancer services in Ontario, Canada should expect to receive. This article describes the dissemination of the PCC Guideline in practice.
METHODS: Three strategies were utilized: (1) educational intervention via a PCC video, (2) media engagement, and (3) research/knowledge user networks.
RESULTS: As of October 2016, the PCC video has been viewed 7745 times across 92 countries. Significant mean differences pre- and post-PCC video were found for understanding of PCC principles (P < .001) and perceived ability to bring these PCC principles to practice (P < .001). Through content analysis, the PCC Guideline recommendations were referenced 236 times, with "Enabling Patients to Actively Participate in their Care" (n = 81), and "Essential Requirements of Care" (n = 79) being referenced most frequently.
CONCLUSIONS: These strategies are an effective way to target multiple PCC stakeholders in the health-care system to increase awareness of the PCC Guideline, in order to further impart knowledge of PCC behaviors.

Background

Person-centered care (PCC), formerly known as patient-centered care, is a fundamental shift in health care that has gained recent popularity following a renewed focus on quality in health care (1). The pursuit of quality health care through PCC was initiated by the release of the Institute of Medicine’s 2001 report “Crossing the Quality Chasm: A New Health System for the 21st Century,” where patient-centered care was highlighted as a one of 6 drivers of health quality, in addition to safety, effectiveness, efficiency, timely, and equitable care (1). Further, PCC has been described as an essential characteristic of a high-quality health-care system by the Institute for Healthcare Improvement’s Triple Aim Framework (2,3). The literature that links PCC to health-care quality improvement has found relationships between PCC and improved patient care (4 –7), provider satisfaction (8), and resource utilization (9 –11). Consequently, PCC has been recognized as a top-ranked priority in Canadian health-care practices, policies, and research strategies (12 –16). In Ontario, Canada, PCC has been prioritized through the Excellent Care for All Act, 2010, which mandates a patient’s first approach to health-care delivery, in order to improve the quality and value of patient care (16).

In Canada, cancer is the leading cause of death (17). It was estimated that in 2017 alone, 206 200 new cases of cancer and 80 800 deaths will occur in Canada (18). In the province of Ontario, 88 000 new cancer cases were projected for 2017 (19). As a patient, the cancer system can be overwhelming (9). This can be attributed to the complexity of the disease, coupled with multiple specialists involved in the delivery of cancer care, in addition to a cancer system that is often fragmented and not prepared to meet the needs, wants, and preferences of individuals (9). For this reason, the Institute of Medicine describes PCC as the core of a high-quality cancer delivery system (9). As such, PCC infrastructure is required in relation to cancer care in Canada.

In Ontario, the Ministry of Health and Long-Term Care has identified Cancer Care Ontario as its agent for the cancer system. Cancer care is further organized according to 13 Regional Cancer Programs, which align with the province’s 14 Local Health Integration Networks. Regional Cancer Programs are networks of hospitals and other agencies involved in planning, delivering, and evaluating of prevention, screening, and diagnostic and treatment services in the region. Cancer Care Ontario has now made PCC a core objective within its strategy, the Ontario Cancer Plan IV (2015-2019; 20), which is timely as the Institute of Medicine recently identified PCC as the single most important characteristic of a successful cancer system (9). At Cancer Care Ontario, PCC is defined as an approach to care that embeds the voice of the patient in the planning, delivery, and evaluation of services in order to create a system where patients can be active participants in their own care (21).

Although there are many general PCC theories and frameworks that exist in the health-care literature (22 –40), a standardized approach to the delivery of PCC that is agreed upon by all key policy makers and leaders is lacking. Consequently, PCC practices and behaviors varied substantially across Ontario’s cancer system, leading to confusion in practicing and delivering PCC. To encourage a standardized approach to the delivery of PCC, Cancer Care Ontario, in partnership with the Program in Evidence-Based Care at McMaster University, adapted and endorsed a Person-Centred Care Clinical Practice Guideline in 2015 (41). The objective of the PCC Guideline is to establish a standard set of recommendations for practicing PCC in the delivery of adult cancer services. The PCC Guideline is intended to provide guidance to all clinicians and staff within adult cancer service settings, including those who don’t directly interact with patients, to encourage the adoption of PCC practices and behaviors in order to improve the patient experience of cancer care. The PCC Guideline includes 65 recommendations organized by 5 dimensions: (1) knowing the patient as an individual, (2) essential requirements of care, (3) tailoring health-care services for each patient, (4) continuity of care and relationships, and (5) enabling patients to actively participate in their care (41). The complete PCC Guideline and development methodology is available online at: https://www.cancercare.on.ca/common/pages/UserFile.aspx?fileId=340815. The purpose of this article is to describe the dissemination of the PCC Guideline in practice to increase awareness of the PCC Guideline and knowledge of PCC.

Methods

Knowledge translation is “a dynamic and iterative process that includes synthesis, dissemination, exchange and ethically sound application of knowledge to improve the health of Canadians, provide more effective health services and products, and strengthen the health care system” (42). In the current study, educational outreach, media engagement, and research/knowledge user network strategies were used to increase awareness and knowledge of the PCC Guideline in order to support the efforts of clinicians and staff to integrate PCC into their routine cancer practices.

Educational Outreach: PCC Video

To increase awareness of the PCC Guideline and impart PCC knowledge to health-care providers, educational outreach (43) was conducted using a whiteboard animation video. Whiteboard animation videos have been reported to increase engagement and attention, leading to improved learning and increased recall among participants.(44) As such, this was selected as an appropriate educational knowledge translation method, given its effectiveness and feasibility (ie, balancing widespread dissemination and cost).

The PCC video is a 7-minute educational video designed to explain the principles of PCC in clear terms and also to explain how PCC behaviors and practices are associated with the patient experience. The PCC video focuses on defining fundamental concepts of PCC and how our health system is striving to achieve it. The purpose of the video was to support health-care staff, including providers and administrators, in their efforts to integrate the recommendations of the PCC Guideline into their roles in order to improve the patient experience with cancer care. The objectives of the video were to (a) increase awareness of the concept of PCC, (b) build awareness of how PCC is relevant to health-care provider and administrator roles, and (c) recognize and incorporate PCC behaviors and practices. The PCC video was deployed to the public-at-large, as well as targeted groups (ie, Regional Cancer Program staff, clinician groups, etc.) via YouTube (https://www.youtube.com/watch?v=NTYRtRNsAko).

A convenience sample of target groups (ie, Regional Cancer Program staff, clinician groups, and so on) who viewed the PCC video were asked to complete a 3-question survey pre- and post-PCC video. A pre–post study design was used to evaluate changes in the targeted group’s awareness and understanding of PCC relevant to their roles and in their recognition of PCC behaviors and practices. Viewers used a 10-point Likert Scale to self-rate (a) how relevant they believed PCC was to their role and (b) their understanding of the concepts of patient experience and PCC. Further, they were asked how they contributed to PCC in their current role based on the 5 components outlined in the PCC Guideline. IBM SPSS Statistics for Windows Version 22.0 (IBM Corp, Armonk, New York) was used for quantitative analyses. Matched paired t tests were used to analyze the data (P < .05).

Media Engagement

A media engagement strategy was implemented. Key audiences were gathered and they received customized presentations to emphasize immediate implications for stakeholders. The purpose was to raise and sustain awareness of and familiarity with the PCC Guideline among key stakeholders to help promote the application of the PCC Guideline. The media engagement approach informed stakeholders of the PCC Guideline and communicated the themes and recommendations of the PCC Guideline, in addition to raising awareness. This communication approach targeted the Regional Cancer Programs, relevant government agencies, clinical audiences, and the public. Methods of communication included e-mail blasts, online publications and blogs, distribution of promotional materials (ie, postcard, e-bulletins), and social media presence (ie, Twitter). Descriptive statistics include (1) the number of Tweets and (2) number of impressions (ie, the number of times a user is served a Tweet in a time line or search results) and engagements (ie, the number of times a user has interacted with a Tweet).

Research/Knowledge User Network

Another evidence-based approach to knowledge translation is the creation of knowledge networks (43). Knowledge networks connect knowledge users who might not otherwise have had an opportunity to interact and share information (43). To encourage the implementation of the PCC Guideline in practice and advance PCC activities in the Regional Cancer Programs, Cancer Care Ontario assembled a Provincial PCC Committee. This committee meets regularly to discuss PCC activities and initiatives, as they align to the PCC Guideline, patient/family engagement tactics, and patient experience measures. This ensures that embedding the PCC Guideline remains a top priority.

The Regional Cancer Programs completed PCC work plans, which required specified deliverables and activities to be aligned with the PCC Guideline, have an element of patient/family engagement, and use patient experience data to inform and evaluate activities. To reinforce the importance of PCC Guideline implementation, these deliverables were tied to funding at risk (ie, proportional funding amounts that are aligned with specific deliverables, whereby, if unmet, funding is returned to the provincial agency, Cancer Care Ontario). The PCC leads were accountable for this deliverable through established reporting. Using content analysis (45), PCC work plans were analyzed qualitatively to determine the number of times the PCC Guideline dimensions were referenced and in which manner.

Results

As of October 2016, there were 7744 views of the PCC video. The PCC video has been viewed broadly by an international audience, including individuals from 92 countries, spanning every continent, except for Antarctica. Table 1 provides an overview of the represented continents and respective countries. The continent with the most views was North America (41.7%), followed by Europe (39%), Oceania (13.4%), Asia (5.1%), Africa (0.5%), and South America (0.3%). The most views was 2358 (30.4%) from the United Kingdom, followed by 2287 (29.5%) views from Canada, 961 (12.4%) views from Australia, and 925 (11.9%) views from the United States.

Table 1.

Overview of Number of PCC Guideline Video Views by Continent and Countries.

Continent	Countries	Number of Views (%)
Antarctica	-	-
Africa	South Africa, Nigeria, Namibia, Kenya, Seychelles, Mauritius, Egypt, Ethiopia	37 (0.5)
Asia	Singapore, Philippines, China, Japan, India, Indonesia, Saudi Arabia, Malaysia, Bangladesh, Thailand, United Arab Emirates, South Korea, Bhutan, Pakistan, Oman, Palestine, Vietnam, Taiwan, Mongolia, Turkey, Jordan, Sri Lanka, Kuwait, Israel, Maldives, Cambodia, Lebanon, Nepal, Yemen	399 (5.1)
Europe	United Kingdom, Sweden, Ireland, Netherlands, Finland, Spain, Latvia, Norway, Denmark, Malta, Greece, Switzerland, Germany, Italy, Estonia, Romania, France, Austria, Portugal, Belgium, Poland, Slovenia, Jersey, Hungary, Bulgaria, Iceland, Isle of Man, Lithuania, Cyprus, Czech Republic, Armenia, Gibraltar, Serbia, Croatia, Ukraine, Luxembourg, Guernsey	3018 (39.0)
Oceania	Australia, New Zealand, Tonga	1041 (13.4)
North America	Canada, United States, Mexico, Trinidad and Tobago, Puerto Rico, Jamaica, St. Lucia, Belize	3229 (41.7)
South America	Peru, Brazil, Venezuela, Aruba, Argentina, Guyana, Paraguay	20 (0.3)

Abbreviation: PCC, person-centered care.

A 3-question survey was administered to a targeted group (ie, Regional Cancer Program staff, clinician groups, etc) of participants pre- and post-PCC video (n = 1017). Data were analyzed only for those individuals who completed both the pre- and postsurvey (n = 531). Thus, 486 individuals were excluded from the analysis. Mean differences pre- and post-PCC video were considered significant if P < .05. Table 2 provides an overview of the main findings.

Table 2.

Pre- Post-PCC Video Viewer Self-Assessment on a 10-Point Likert Scale.

Survey Question	Pre-PCC Video Mean (s2)	Post-PCC Video Mean (s2)	P Value
How relevant do you think person-centered care is to your role? (n = 531)	9.36 (1.38)	9.52 (1.17)	<.001
How would you rate your understanding of the concepts of patient experience and person-centered care? (n = 525)	7.84 (1.75)	9.18 (1.02)	<.001
How effective do you feel this video has been in helping you be as person-centered as possible in the work that you do? (n = 531)	-	8.62 (1.60)	-

Abbreviation: PCC, person-centered care.

Overall, participants (n = 531) believed that PCC was relevant to their role prior to viewing the PCC video (mean = 9.36). A significant difference (P < .001) was noted post-PCC video, as it appears that the PCC video further emphasized the relevance of PCC to participant’s roles within the health-care system (mean = 9.52). When participants (n = 525) were asked to rate their understanding of PCC and patient experience concepts prior to viewing the PCC video, viewers reported a high understanding (mean = 7.84). Following the PCC video, viewers reported significantly increased (P < .001) understanding of PCC and patient experience (mean = 9.18). In general, participants felt that the PCC video was an effective method in helping them be as person-centered as possible in the work that they do (mean = 8.62). Further, in 2016, the PCC Video was recognized as a Platinum Winner of the 2016 AVA Digital Awards (46).

In the first 90 days after the PCC Guideline launch in May 2015, Cancer Care Ontario Tweeted about the PCC guideline 44 times. That created 38 457 impressions (ie, the number of times a user is served a Tweet in a time line or search results) and 137 clicks to learn more about the guideline. There were more than 300 other engagements with these Tweets (ie, the number of times a user has interacted with a Tweet. This includes retweets, replies, follows, likes, and clicks anywhere on the Tweet including link clicks, hashtag clicks, embedded media clicks, username clicks, profile photo clicks, or expansion of the tweet).

The 14 PCC work plans submitted by the Regional Cancer Programs were reviewed using content analysis to explore how many times the 5 dimensions of the PCC Guideline were referenced. Of the 14 PCC work plans reviewed, 10 PCC work plans included references to the dimensions of the PCC Guideline, whereas 4 did not. The results presented below represent the PCC Guideline content referenced by these 10 PCC work plans.

The PCC Guideline was referenced a total of 236 times across 10 PCC work plans. The most commonly referenced dimension of the PCC Guideline in the PCC work plans was “Enabling Patients to Actively Participate in their Care” (34.3%), followed by “Essential Requirements of Care” (33.5%). The content referenced in these dimensions related to patient concerns, information, communication, nutrition, pain management and personal needs, shared decision-making, respect for the patient, patient independence, education programs, and consent and capacity. “Tailoring Healthcare Services for Each Patient” (14.0%), “Continuity of Care and Relationships” (9.3%), and “Knowing the Patient as an Individual” (8.9%) were the least cited dimensions of the PCC Guideline within the PCC work plans.

Discussion

The culture of health care has changed over the last decade as a result of a call to action, a call to provide high-quality health-care services. This shift has been initiated by legislation, which mandates a patients’ first approach to health-care delivery (16). The adoption of PCC is widely viewed as a vital step in creating high-quality care focused on treating patients as people, first. Prior to the creation of the PCC Guideline, there was no standardized approach to guide the delivery of PCC in cancer services. This proved to be a key challenge in moving forward the PCC agenda, as PCC practices and behaviors had not been formally defined or understood. The PCC Guideline is the first of its kind in Canada, which outlines a level of service that every person accessing adult cancer services in Ontario should expect to receive.

The strategies presented in this study were successful in increasing awareness of the PCC Guideline and serve as an example of how system-level strategy can be deployed in the regional, organizational, and clinical settings. The effectiveness of the PCC video as a strategy for generating awareness of the PCC Guideline and imparting PCC knowledge to health-care providers was demonstrated by its impacts on baseline understanding of PCC principles, as well as its viewers’ perceived ability to bring these PCC principles to practice. Further, the PCC video has demonstrated its ability to promote awareness of PCC internationally, as can be seen through the large number of views by international stakeholders. As a recommendation for future PCC educational initiatives, the PCC video could be viewed by staff and volunteers in cancer services to ensure consistency and understanding of PCC, while also serving as a training tool for new staff and volunteers.

Finally, the development of the Provincial PCC Committee and the implementation of PCC work plans within the Regional Cancer Programs appear to have facilitated changes in PCC planning and evaluation behavior, as can be seen through the references to the PCC Guideline in the work plans. This approach reinforced PCC as a high priority in cancer services and ensured alignment with the PCC Guideline. Tying this work to funding provided not only PCC resources to the Regional Cancer Programs but also ensured that the Regional Cancer Programs were accountable to the PCC vision. The PCC work plans completed by each Regional Cancer Program specified key deliverables and activities as they aligned with the dimensions of PCC Guideline. Ten Regional Cancer Programs made references to the dimensions of the PCC Guideline, most often referencing “Enabling Patients to Actively Participate in their Care” and “Essential Requirements of Care” as the main focus areas. These findings will help to inform future research opportunities for PCC implementation. Cancer Care Ontario is continuing to provide support to the 4 Regional Cancer Programs that did not reference the PCC Guideline to encourage implementation of the recommendations within their work plans, and in doing so will assess the effectiveness of the knowledge translation strategy in accounting for local implementation contexts. Future initiatives will look to further ensure that all Regional Cancer Programs are including elements of the PCC Guideline within their annual PCC work plans. Additionally, research should be conducted to identify ways to encourage the uptake of initiatives reflective of elements of the PCC Guideline less referenced by Regional Cancer Programs (ie, Tailoring Health-Care Services for Each Patient, Continuity of Care and Relationships, Knowing the Patient as an Individual).

Limitations

The current study has several limitations. The main limitation of this study is that there were no measures in place to evaluate the effectiveness of the strategies with regard to increasing capacity for PCC practices. Thus, we are unable to report practice or behavior changes among health-care providers within the Ontario Regional Cancer Programs, which may have occurred as a result of this approach. Subsequent research will need to shift in focus toward capturing behavioral changes that are indicative of PCC Guideline application. Secondly, convenience sampling was used to select participants; therefore, selection bias may be present. Further, demographic characteristics were not collected during the educational outreach. As such, the study findings are not generalizable. Finally, only descriptive statistics are available for the twitter activity in the media engagement component of this dissemination strategy. A more robust evaluation of media engagement activities should be included in the future.

Conclusions

These strategies presented are an effective way of targeting multiple PCC stakeholders in the health-care system to improve PCC education and awareness and serve as an example of how guidelines can be deployed in organizational and clinical settings. Future research is required to understand PCC Guideline implementation and impact on clinician behavior.