Why Patient Engagement Must Become a ‘Way of Life’

While there have been numerous changes and innovations to health care in Canada through the years, our health systems still depend to a great extent on inherited, top-down models of care. The shift to patient-centred care (aka person-centred care) and increased Patient Engagement, as a means of improving health outcomes, are relatively new concepts that have only just begun to take root.

But as early successes in Patient Engagement show a measureable impact on Quality Improvement, the case for Patient Engagement as a “way of life” for health care organizations becomes increasingly compelling and urgent: Virtually all health care systems would benefit from adding Patient Engagement to their care strategy.

A Scientific Link Between PE and Quality Improvement

Numerous health providers across the country are already well on their way to making Patient Engagement central to their feedback mechanisms. The Canadian Foundation for Healthcare Improvement (CFHI) has identified Patient-Centred Care and Patient Engagement as core priorities, going so far as to refer to them as a “way of life” for health care organizations. And the two are intertwined. For example, the Person-Centred care model created through EBCD by the Northumberland PATH initiative has five key principles:

• Respecting and honouring the beliefs of persons and families
• Collaborative engagement and partnership with persons and families
• Excellent communication and shared decision making with persons and families
• Holistic care with persons and families
• Empathetic relationships with persons and families

For many governments, and other health care funders, the focus remains on Quality Improvement. But there has been a missing ingredient to much of that work, and that is Patient Engagement. Increasing numbers of health care organizations are awakening to the link between the two. As a result, in the coming years it is increasingly likely that Patient Engagement will become commonplace among health care organizations in Canada.

Although groups are still learning about how this connection works, several studies have demonstrated an impact not only in health care but also in health research. For example, a UK study examined 345 research studies funded through the mental health research network. The study assessed the association between public involvement and the efficiency of recruitment.  Where there was a low level of public involvement, a marginal increase in efficiency was observed, as measured by the ability to meet time-line targets; in contrast, studies with strong public involvement throughout the course of the research were more likely to hit time-line targets, demonstrating better implementation and delivery.

Other studies are underway. For example, In the Partners Advancing Transitions in Healthcare (PATH) program, based in Northumberland County, seniors and caregivers are working with 12 health and social care organizations to identify difficulties in care transition across Central-Eastern Ontario.

Through this program, patients, their families and/or delegates will work with health care workers to redesign the face of care and improve patient experiences and outcomes as they transition from one part of the health care system to another. One World Inc. is leading a team of evaluators in undertaking a system-level evaluation of the program to better understand the value and impact of both patient engagement and the involvement of a broad range of health and community partners. Experiments like PATH are helping to provide a better understanding of how to use Patient Engagement to achieve maximum impact and tangibly improve health outcomes.

Patient Satisfaction versus Patient Experience

In the past, a primary tool to seek patient input has been the satisfaction survey or complaint systems. These metrics have often been the primary thread of accountability from health providers back to patients. However, the patient survey, on its own, is an imperfect means of feedback and is subject to a number of limitations.

The CFHI, among other agencies, cautions that the interpretation of survey data “should be viewed as one aspect of a broader strategy for involving patients in the design and improvement of health care.” Also noteworthy, particularly in the Canadian context is, “if patients perceive their providers as being under pressure or constrained, aspects of care which they would otherwise expect may be overlooked without penalty.”

Additionally, the CFHI has found that even when care has been underwhelming, “a reluctance to be negative led to patients expressing artificially high levels of satisfaction.” As a result, even for health care organizations with very high levels of satisfaction, Patient Engagement must still be a priority as experience and satisfaction (as expressed in a survey) are often quite different in a health care setting.

Other vehicles, such as story-telling, that focus on the actual patient experience rather than just patient satisfaction, would improve the overall quality of services delivered. And when health care providers and policy-makers hear the stories of these experiences, it can shake-up their assumptions about what is actually happening on the ground.

For example, the Executive Director (ED) of a centre providing home care services heard patients tell their stories of the difficulties with transitions between hospital and home care. Patients spoke of the challenges posed by having multiple home care service providers. Since the centre’s policy put a limit on the number of different home care providers any one patient should have, the ED at first thought that these kinds of claims would be impossible; however, after hearing their stories (and realizing that is was a common, rather than a one-off experience) he moved to close the gaps between policy and practice that were seriously affecting the quality of homecare.

Reading the results of a satisfaction survey would not have been enough for the centre to fully understand and take action on this input; but hearing the full experience allowed the service to take effective action.

Patient Engagement: A Sustained and Comprehensive Effort

In order for sustained and comprehensive efforts in the realm of Patient Engagement to rise above tokenism, health care organizations must weave Patient Engagement strategies into all of their quality improvement initiatives. The CFHI says that Patient Engagement projects must not be “stand-alone” but, rather, “business as usual.”

And, perhaps most critical of all, is the need to continually evaluate and measure the outcomes from Patient Engagement activities as a way of understanding their value to the organization. It’s essential to look at what works best, when, and the extent to which Patient Engagement activities are fulfilling the greater good of ensuring quality outcomes for the health and wellbeing of patients.