I see three reasons to strongly promote patient engagement in healthcare initiatives from a quality and safety perspective. The reasons are:
Patients (and families in the broad sense of the word) understand the challenges faced by the healthcare system and want to help us (providers, administrators, managers) fix and improve it.
Patients and their families are as intelligent, perceptive, and observant as are managers and providers and want exactly what we want – high quality, consistent and safe healthcare services.
Determination and self-interest
This answers the question “Who has the strongest interest and commitment to having quality, safe care provided in our system?” The answer, clearly, is the patient.
My first experience in understanding the power of patients and families was as a medical student, when I was part of a group that established a community-controlled primary healthcare clinic in the Point St. Charles area of Montreal. The direct participation of large numbers of patients and residents ensured the creation and management of a service that continues in a robust manner 40 years later. Patients played a key role in defining the range and scope of services, and populated innovative roles such as community health workers that bridged the gap between theory and practice.
My next experience came several years later as a healthcare mediator and conflict engagement practitioner. The willingness of participants (physicians, nurses, administrators and patients) to actively engage in dialogue demonstrated that most individuals want to solve problems at the most direct and non-confrontational level. Very specifically, patients want to understand what is happening, and when they are allowed to participate in dialogue will contribute actively and will promote innovative solutions and resolutions.
My next major learning experience with respect to direct patient and family engagement in the planning and implementation of patient safety initiatives came during several years as the Chief Patient Safety Officer for a large urban health authority. This was manifested at several levels, with patients participating actively in the investigation of adverse events and critical incidents that had led to harm, and others giving freely of their time and energy working on committees, sharing their experiences with health students, and undertaking qualitative research projects of their choosing.
Most recently, I have been a patient myself, undergoing extended (and successful) treatment for breast cancer. Patients provide one another with warmth and human contact, and strong emotional support. They share reliable information about the variations in the journey they are experiencing. While admiring and respecting the devotion of providers (physicians, nurses, technicians, pharmacists, librarians, support staff) to provide safe, quality care in a complex system, I came to rely more and more on fellow patients for an understanding of the experiences I would encounter.
We will make progress in healthcare to the extent that we create spaces at the table for patients and their families and allow them to participate actively alongside all providers who want to do a good job. They will bring endless goodwill, intimate and useful knowledge, and unprecedented determination to the table.