This article is part of a series of articles on the topic of People-Centered Care originally published on LinkedIn as part of Beryl Institute’s Patient Experience Week 2022.
You can find the original LinkedIn article here.
Note: In this article, for the sake of brevity, the term “patients” can include any person involved with the health system for care and service, including those we would otherwise call residents, clients, etc. I may also use the broader term of “people with lived experience”. The acronym PCC will be used in place of People-Centred Care.
Also, this week, I will be sharing some of my own perspectives, but also content that comes from CHA Learning’s online People-Centered Care Program. CHA Learning is the professional development division of HealthCareCAN (the national voice of healthcare organizations across Canada and a non-profit charitable organization) and where I joyfully work, supporting health system improvement through online professional development.
At the end of every post this week, I will also post a question for self-reflection or discussion, so feel free to comment on my posts with your answer.
Along with many other negative implications COVID-19 has had on our health system, we’ve heard a lot about the negative impacts on patient-family and staff experience during the pandemic. Family presence, which had become a norm in many organizations, was lost. Many who worked tirelessly in the field of patient experience and patient-family centred care (what we call people-centred care at CHA Learning) have felt discouraged by the steps backward that have been taken over the past two years. Patient partners have not had the same opportunities to participate and some feel that the valuing of patient partners has slipped. But, great work by great people and organizations is still happening in health care in Canada, we must move forward and try to rebuild and keep growing. One of the ways we can do this is by sharing knowledge and empowering people to contribute to people-centred care in any way they can.
For the Beryl Institute’s Patient Experience Week, I’ll share some foundational knowledge about people-centred care (PCC): what it is, what it means at the individual, organizational and system levels. I will talk about patient and family experience: what it means, why it is important, and how it can be evaluated. I will examine the traditional narrative of patients being ‘outsiders’ of the health system. I will discuss the importance of staff and clinician engagement as a critical element of PCC and some techniques for unleashing intrinsic motivation. And finally, we’ll hear from one of our favourite patient engagement experts, Lesley Moody. Watch for my daily posts on these topics this week.
Today, let’s start with the basics – some important key terms and definitions.
What is People-Centred Care (PCC)?
People-centred care (PCC) is an approach to healthcare that consciously adopts individuals’ perspectives as participants in, and beneficiaries of, trusted health systems. These healthcare systems are designed with and for the communities they serve: patients, families, and caregivers. PCC is about an overall philosophy and approach that suggests everything individual providers or healthcare organizations do – clinically and administratively – should be based on patient needs and preferences. This covers a range of activities: planning, care, evaluation and research, training, and even staff recruitment (Fooks, Obarski, Hale & Hylmar, 2015).
PCC encompasses “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” (Berwick 2009). PCC is about empowering people to influence both their own care and the broader health system.
We also use the term PCC as a more inclusive expression to include others we should partner with, including caregivers, staff and clinicians, volunteers, and so on. The term takes into consideration the care team as people who are in partnership with each individual and their caregivers/family members (whoever family may be to that person).
What is the difference between PCC, engagement, and experience?
While the terms PCC, engagement, and experience are sometimes used interchangeably, they are not the same thing. Engagement is generally seen as a tool of PCC, whereas experience is an outcome of PCC. Effective engagement leads to enhanced patient experience. When people with lived experience are then involved in process or system improvements, co-design, or other system-level development, experience then informs engagement.
Experience is the sum of all interactions with a healthcare provider, organization, or system. Many aspects of a care journey can impact experience, and experience differs for each person. Patient experience is how patients perceive and experience their care and the health system. On Wednesday, my post will focus on experience specifically.
PCC speaks to a more holistic approach to involving the right people, to the right extent, at the right time, under the right circumstances. Of course, ‘right’ is subjective and individual and the patient or family needs to be part of that decision in most situations too. The challenge with the term engagement is that it falls on a continuum of involvement. Engagement can be informing someone or conducting a survey to solicit basic opinions. Sometimes, that may be appropriate for a situation.
Engagement at the care level is the extent to which healthcare providers work with patients and families to provide care – informing, consulting, or partnering. At the organizational level, patient and family engagement is the extent to which healthcare organizations involve patients and families in the delivery of care and service. Later this week, I’ll address some of the factors that come into play when trying to determine what level of engagement is necessary, appropriate, and feasible.
How does PCC help us evolve our thinking about care delivery?
Patients are people first, and not defined by their disease or reason for interacting with the health system. The label ”patient”? only describes one aspect of their life and limits our view of who they are. Implementing, enabling, improving, or creating PCC alters the patient-provider relationship. Fundamentally, actions that support PCC will (or should) replace an imbalanced, paternalistic patient-provider model of care with one where patients and providers are equal partners in care. PCC should give people the knowledge, skills, and tools to better self-manage their health and healthcare, to the extent that they want to and can.
Interacting with a patient as a fellow human being instead of through the eyes of their illness changes the way we see them and relate to them – considering what is important to them, what gives them joy, what worries them and what their goals are changes the whole conversation about their healthcare. Take this a step further, and view people as the combination of their experiences, strengths, skills, and values. This not only reduces the power imbalance of the traditional provider-patient relationship, it also pushes us to see all of the tremendous value people bring to the healthcare experience and our health system. In individual care experience, we can have a dialogue that balances the science of healthcare with the art of empathy, trust, and relationship-building. In terms of health service improvement, we can invite patient partners in as people with all sorts of lived experience that lends value to our strategy, planning and improvement activities. I will explore these concepts a bit more on Thursday.
Tomorrow, I’ll talk about changing the narrative around the label “patient” and the way patients have traditionally been seen as “outsiders” of the health system.
If you’re interested in more formal learning on the topic of PCC and how to partner with patients, families and others, you can check out our online People-Centred Care Program.
Each day, I will leave you with a question to reflect on or post for discussion. Here is today’s:
Do you have an example from your personal experience as a patient or family member where you did not feel you or your loved one was treated as a whole person rather than a patient/related to your illness? What do you wish the healthcare provider or team knew about you/your loved one?
Fooks, C., Obarski, G., Hale, L., Hylmar, S. (2015). Patient engagement: We need to get on with it. Healthcare Papers: 2015; 14(4).