Thoughts on 2017 & the road ahead

Thank you to those that responded our last post.  It had been a little while since the previous one.  During that time we were working on the development (with an amazing team of dedicated people) of a short, high-quality film showing Greg’s fatal journey through the health system.  The film itself is now complete and we are beginning to show it to a few select audiences with very positive reactions.  Our goal is to help create more impetus for improvement with both people inside and outside the health treatment system.

Professionals in the system

Future doctors – Through its use with medical schools and other health professionals who are just learning what their careers will involve.  We hope the film will emphasize the importance of teamwork and communication.

Current providers – We also hope the film will be helpful to individuals and organizations who are currently active in our health system. We understand from early comments that it will help reinforce the drive for improvements moving to close gaps in today’s health system at different levels.

The Public

Patient and their families – To inform and prepare patients and families to be full partners and advocates for their own care.

The healthy public – To inform and engage the healthy public in a way that they will be motivated to be an active participant and citizen who has an essential voice in our healthcare system.  We want to mobilize support for the great people inside the system who are bravely trying to innovate and to make improvements, while facing the very strong political headwinds that are a reality of a monopolistic, government/politically-managed system.

We have established a not-for-profit organization named Greg’s Wings Projects to provide the home structure for the film and the later development of legacy initiatives that relate to the strong beliefs and support Greg demonstrated in his life.  For more information about the film and its on-going uses, you can see that on the Greg’s Wings website.

At this time of year, it is natural to reflect on the past year and to look forward to this New Year.  We look back with great gratitude for the support we have had as a family for the efforts around getting the Falling Through the Cracks film produced.  We also appreciate the opportunities we have had to take part in meetings and conferences with health professionals who are seeking new ways to support and drive positive improvement.  One highlight was the Strategic Leadership Forum for the province’s Primary Care Networks that was held in Calgary in September.  There we saw and learned about very good programs that doctors and their clinics are developing and implementing.  We heard about successes through leading practices working with patients and their families to result in better and more efficient care.  Very importantly, they have programs that extend to include mentorship between members and clinics to help everyone learn and improve based on these successes.  This is exactly what we are talking about in the needed culture shift to real teamwork.

It was concerning though, to hear at that conference that doctors’ ability to access information has not improved but in fact, it was stated to be worse now, than even a few years ago.  Primary Care Doctors are the ones that are the closest to patients and it is very important that they have quick and easy access to all information.  It is much more difficult than it should be.  When patients go to emergency or other services, their family doctor is not automatically notified and therefore may be unaware and unable to properly follow up and maintain their place in the team working with the patients in their care.  We believe strongly that full and complete access to all information applies to patients as well.  Time and time again, it has been proven that well informed and engaged family doctors, and patients, are able to positively affect the patient’s care outcomes.  While we continue to hear about the commitment of this government and Alberta Health Services to getting a complete electronic health record system in place and greater access to patients of their own health records, it is very slow in coming.  The patient’s part has repeatedly faced delays.  We worry that all of this continues to be system and administration driven without a real priority for patents (or their family doctors).  It is a concern to hear that things are actually getting worse at the family doctor’s level.  There are systems available and in use elsewhere.  It is frustrating for patients, and their family doctors to be stuck where we are today.

In a recent article examining the Fatality Inquiry Review System, Paula highlights the frustration of the slow and arguably practically useless investigation and reports through these fatality inquiries.  This is yet another reinforcement for the need for the empowerment and non-political funding of a clearly independent body to do the investigation.  It must be able to not only make recommendations for change but to have the authority or at least a mechanism to require implementation of the recommendations within a time frame they set.  We believe that it is a fundamental characteristic of government managed or government monopolies to avoid or at least delay public transparency of wrongdoing or failures.  This is completely connected with the avoidance of political risk by politicians in order to remain in power.  When the choice needs to be made between one’s political skin, the harmed lose and the opportunity to learn from mistakes is wasted.  While some politicians may argue that they can do more if they remain in power, the reality is that they are prioritizing their personal time over the patient’s exposure time and that is not acceptable.  We, the public, then continue to face unnecessary risk of harm.  We believe that this is one of the strong messages that Judge Robertson had in his report.

It will take the public, the informed and engaged electorate, to change the political priorities of government and their administrators toward genuine improvements, learning from mistakes or errors and eliminating gaps and failures, rather than continuing to repeat them.

For this New Year, we will continue to promote our goal of having Safe, Continuous, Collaborative, Patient Partnered Care, building on our three priorities;

• Patient access to and possession of all our health information and the ability to share it with those are part of our care.
• System transformation to genuine team delivered care
• Independent ability to learn from mistakes and near misses, ensure implementation of positive system-wide improvements.

We will do this building on the great work done by the Health Quality Council of Alberta and by Auditor General for Alberta, Merwan Saher and his team, in their report Better Healthcare for Albertans. We will provide our perspective on some of the decisions being made affecting our health care as well.

Of course, we will continue to be more than willing to connect with any groups or organizations in Alberta or any where else, that are interested in hearing from us, or would like us to know more about what positive initiatives they are doing, as we work toward genuine improvements in partnering with patients in our care.  It is also valuable for us to continue to learn from patients and their families about their own experiences with the system and from those great people that are working inside the system to try and improve the care provided.