Real patient and family engagement takes courage

Posted Dec 19, 2018

On the five-year anniversary of the release of the HQCA’s Continuity of Patient Care Study, Greg Price’s family reflects on their journey to improve continuity of care for Albertans. 

Five years ago, after the courageous decisions made by the Board and leadership of the Health Quality Council of Alberta (HQCA), the Continuity of Patient Care Study was released. Dr. Tony Fields, Chair of the Board at the time, made this statement in the foreword: “Probing this case lets us look closely at specific problems in the system. More importantly, however, it helps us remember that people are at the centre of the healthcare system.

For us, Greg’s family, the experience of being invited to work with the wonderful team at the HQCA, to discuss, learn, and to contribute to the development of the report gave us genuine hope. Hope that we would have some answers. Hope that there may be some real action taken to change things. Hope that others would not face the same terrible fate Greg had.

The experience with the HQCA team, and the report, was foundational for us. We were able to become more than “another grieving family”. Our family’s support for positive change is built on the report’s carefully documented investigation, its thirteen recommendations, and its “lessons learned” for patients and families, providers, and the system.

During this five year journey, we have met a great many wonderful people, doing the very best they can to provide care while their work is much harder than it should be. They face many unnecessary challenges because of the lack of a real system of care. Too often, leaders within the various areas of healthcare, or “silos”, pursue their own (or imposed political) priorities. Priorities that do not align with what we consider the goal:

Everyone—providers, patients and families, leadership, policy makers, etc.—contributing their strengths together, to achieve the patient’s best possible care outcome and experience.

Five years ago, the HQCA team included us, and set a unique and new level of collaborative teamwork to identify opportunities and to provide recommendations for improvement. This model reached well beyond the traditional, very strong boundaries that kept people like us on the outside of “the system”. Five years later, we are encouraged by the growing openness of people at all levels to discuss challenges and to develop solutions together with patients and families.

The HQCA and those that have embraced teamwork models that include meaningful patient and family engagement do remarkable and brave work on behalf of Albertans. However, with that courage comes the on-going risk of negative or defensive reactions that stall, or worse, impede progress entirely.

Some of the report’s recommendations have been implemented, including clarity on the intervals that referrals to specialist physicians need to be acknowledged and acted on, one way or the other, and the strengthening of the standards for after hours care (see the College of Physicians & Surgeons of Alberta’s (CPSA) Continuity of Care standard of practice). Leaders worked together to enable radiologists to initiate the next test (which would have saved Greg valuable time) when the need is evident and necessary to insure timely diagnostic work, while keeping the patient’s family doctor informed.

Our family, Greg’s family, will be forever indebted to the people of the HQCA. Their courageous leadership and respect given to us during our very difficult time changed our family’s course for pursuing and supporting change in healthcare. This model of teamwork is setting new expectations for collaboration, accelerating the positive change of continuous improvement in health care, making it the very best it can be for everyone.

To fully accomplish this goal though, we need Albertans to become informed and join us (read more about how on our Health Arrows website). Only by working together can we shift the needle to align completely with this better care goal, for patients and providers alike.

Thank you,

Greg’s Family

 

HQCAMatters is published monthly and presents perspectives on topics or issues relevant to healthcare in Alberta the HQCA considers valuable.