Case Studies: How Patient Engagement Has Addressed Challenges in Health Care Policy and Practice

The health care system can be intimidating for patients and their families to navigate: many patients, their families, and advocates feel that their wants and needs are little understood. Yet health care providers feel the strain of the system too, as providing the best possible care often involves coordinating treatments across multiple departments and managing pressure-filled situations.

Many of these issues can be solved by engaging in dialogue. Patient Engagement (PE) provides a helpful model for bringing together health care providers and patients and their families to identify common issues and generate potential solutions.

Here are some examples of challenges faced in the field of health, and how PE has been successful in addressing them The first three are projects that we at One World Inc have been involved with and the other three are from the Canadian Foundation for Healthcare Improvement.

Challenge: Ensuring that health research funding priorities are informed by patient values

How PE can help: Recently, One World Inc. helped the Canadian Institute of Health Research (CIHR) to develop the Patient Engagement Framework and Strategy for Canada’s Strategy for Patient Oriented Research (SPOR). Patient engagement will ensure that patients play a meaningful role in the development of high‐quality, relevant health research and its translation into clinical practice and health policy. The strategy will outline opportunities to involve patients in the identification of health research priorities. It will also demonstrate the importance of involving patients in the design and conduct of research projects. By considering patient input when determining priorities, this strategy – once implemented – will influence how health research is funded, undertaken and disseminated.

Challenge: Improving the quality of care and life for Canadians living with Diabetes by developing a common vision and unified voice for their rights and responsibilities

How PE helped: One World Inc. recently worked with the Canadian Diabetes Association (CDA) to engage patients in developing a charter that spells out what’s important for Canadians living with diabetes. The resulting Charter provides the rights and responsibilities for those living with diabetes (and their families) as well as health care providers, governments, employers, fellow employees, etc. Recognizing that “what gets measured is what gets done”, the Charter also provides concrete indicators to measure progress.

Challenge: People are falling between the cracks when they transition from one part of our health systems to another

How PE can help: It’s hard enough to improve the care journey within a health care institution or service. It’s even harder when the focus is on improving the journey as one moves between health care providers and services. To help address this issue, The Change Foundation brought together a standing panel of 32 Ontario patients/caregivers with chronic illnesses that tend to make them heavy users of the healthcare system. The goal is to engage them in helping to identify ways to improve healthcare by exchanging views and experiences. One World Inc worked with the panel – called PANORAMA –to inform the Change Foundation’s work in strengthening health care transitions for people living with multiple chronic conditions. Through a deliberative process, that included a sharing of views and experiences, the panel explored the role of health system navigators. The resulting report is available on The Change Foundation website.

Challenge: Absence of patient and family engagement in health care issues and delivery of services could be hindering health outcomes.

How PE helped: Knowing that Patient Engagement often leads to better health outcomes and more active participation in health management, Alberta Health Services used input from patients, family members and providers to develop a resource kit that provides tools and tactics to help patients take on a more active role in their health care.

Challenge: Delivering recovery-focused care – as opposed to custodial care – is challenging for many staff, given that most health interventions focus on stabilization, and health care providers often don’t witness the encouraging, longer-term, positive outcomes of patients.

How PE helped: The Centre for Addiction and Mental Health in Toronto is engaging former patients to speak to staff about the value and importance of a recovery approach to care, and to participate more deeply in the process of teaching staff how to best care for them.

By giving staff a chance to see how the care they provide continues to help patients, even post-discharge, health care providers are reminded of the positive effect of their actions, even if they don’t always get to see the results.

Challenge: Lack of organization means that health care providers spend too much time looking for the tools and resources they need, and not enough time interacting with patients. The result is frustration about quality of care from both staff and patients.

How PE helped: Staff at the McGill University Health Centre engaged staff and patient representatives to improve both the work environment and patient experience. Rooms were redesigned and equipment was relocated to make it easier for staff to find the tools they need.

Whiteboards were also added to patients’ bedsides to serve as a two-way communication tool between health care providers and patients. Nurses now take the time to ask about patients’ priorities and needs for the day, to better direct their care. The result has been, among other things, a decrease in intake time and an increase in patient satisfaction.

Challenge: Health care providers in forensic psychiatric hospitals face unique challenges, including how best to involve patients in their own care.

How PE helped: The BC Forensic Psychiatric Hospital (FPH) designed a program with three teams of patients to improve quality of care and patient experience. The teams examined perceptions of treatment planning, and developed a Peer Support program to deliver group-based and individual support for patients.

They also involved parents to ensure that their perspectives, opinions and insights were involved in decision-making and service delivery. The program has shown that the benefits of PE are observable even in forensic psychiatric hospital settings.

Whether it’s n direct service, policy or research, patient engagement has a significant role to play. By breaking down barriers between health professionals and patients , PE effectively improves care and quality of life, even in areas that face unique challenges.