Today marks the third anniversary of the release of the Health Quality Council of Alberta’s (HQCA) public release of the Continuity of Patient Care Study. It was their investigation of our son Greg’s tragic journey in Alberta’s health treatment “system”. The original plan was for HQCA to investigate the part of Greg’s care that occurred outside the system of Alberta Health Services (AHS), AHS would complete their own investigation and two organizations to release publicly a joint report of their findings. The HQCA completed a thorough investigation and released their report with well-researched recommendations on December 19, 2013. We were included in process with the exception of interviews and specific details provided by individual care providers because they are rightfully protected by Section 9 of the Evidence Act. We met several times with senior representatives of AHS but the findings or recommendations into the portion of Greg’s care that fell within their walls has never been given to us and has never been released publicly.

Last October, Deputy Minister Dr. Carl Amhrein asked the HQCA to do a follow-up report to check on the status of the recommendations that were made in the Continuity of Patient Care Study. On April 29th the completed report was given to the government and on July 13 the report; Improving Continuity of Care: Key Opportunities and a Status Report on Recommendations From the 2013 Continuity of Patient Care Study was released to the public.

More than two years later, of the 17 recommendations and sub recommendations made in the 2013 report:

  • 3 have been implemented as intended in the recommendations.
  • 6 are in progress with some barriers identified with a moderate risk of not being implemented
  • 5 face major barriers with a high risk of not reaching full implementation
  • 3 have seen no work completed, and with no path identified for implementation

The report goes beyond simply reporting their findings on the HQCA’s recommendations by providing advice on potential ways forward, based on its interviews and investigation. It is a valuable document for those that believe in and are committed to improving patient care here in Alberta. The report also recommends that the Health Quality Network (which includes all of the major stakeholders from within our health system) be given the responsibility of monitoring and reporting progress to the minister – an important recommendation that we believe is critical in moving stagnant recommendations forward. Having all of the players at the same table is crucial to breaking down some of the barriers that exist – the system must work together and be held jointly accountable.

In the four plus years that as a family, we have been seeking answers and advocating for positive improvements, we have met and marvelled at the many individuals and smaller groups of people who work extremely hard with patients and families to provide the best care possible. There are a few who go beyond this and willingly stand in the light, attempting to move improvements in the system forward. These people are truly heroes for unfortunately they are swimming upstream against the command and control culture that has been politically fostered here. This culture deals with these people seeking improvement and those from outside the system that ask questions and seek answers by employing the use of well-worn progression of tactics. Initially the system establishment denies any problem exists. If unsuccessful, they then delay any work on it. When that is insufficient they move on to defend their previous positions or actions, and if questions still continue to be raised, they then attempt to intimidate those that persist to seek answers and improvements. More recently we have seen a new tactic. That is to attack, from behind the establishment’s secure and secretive walls, the credibility of those that doggedly pursue answers and improvements. Where positive change organizations are involved, these attacks are also aimed at making it more difficult financially, to carry out their very valuable work.

We believe now more than ever, that the needed change cannot happen from within. Significant positive (lifesaving) change will only come if we the public take on the establishment while at the same time supporting those that bravely work for change from inside the system. Few people in Alberta do not know someone who is working on the front lines in the health treatment system. We have seen an increased willingness of an increasing number of positive and courageous people prepared to help explain to us and to the public, what they see and what they believe will help make things better. As members of the public we all need to reach out to all we know to learn as much as we can about what is really going on. At the same time, we need to talk to other Albertans, family or friends that have had experiences as they have sought or are seeking care from this treatment system. We also have to look beyond the efforts of the individuals involved and consider how this “system” works or doesn’t work as compared to any other system providing services to the public. There is much work to do. The system’s culture took root with Minister Horne and has built thicker walls while political talk of transparency has bubbled up and quickly faded away under multiple Premiers, Ministers and governments.

Whether part of the “inside” or the public, ask questions, learn and where ever you are comfortable and motivated, support positive change. The status quo, or “stability” as is often trotted out, is not acceptable. It is not safe and in fact is dangerous to patients and it is demoralizing for the great providers and those trying to make a difference. We can change this for the better by working together. Let’s make 2017 a strong year of action.

Appreciating HQCA’s foundational work – 3 years later