It’s June 5, 2018, and the air is electric with chatter throughout the main atrium of the Palace Theatre in downtown Calgary, located on the glitzy Stephen Avenue.
Under flashing banners advertising “The Co-Pilot Collective” and encouraging people to “join the movement,” patrons wander to their seats clutching both drinks from the bar and plates holding catered sliders. Towers of television screens advertising sponsors and start-ups bookend the main stage.
It’s a done-up affair, but the reasoning is less about glam and more about the story of one man and his journey through the Alberta health care system, an experience that ended with an untimely death.
The few hundred audience members take their seats. After a brief introduction from the moderator, the lights dim. The main screen, cut to black, now features a title card: Falling Through the Cracks: Greg’s Story.
A Pilot From A Small Town Called Acme
In early 2011, Greg Price, a then-30-year-old private pilot and engineer from Acme, Alta., went in for a routine physical examination where the primary care physician noted a lump on one of his testicles. It was decided that it wasn’t a high priority, and no follow up was planned.
Just-over 11 months later, Greg returns to the same physician, who, noting that the lump had not gone away, refers him to a general surgeon. Three more months will pass before he is contacted about an appointment with the surgeon’s office.
He begins suffering from lower back pain, and, 51 weeks after the initial visit, goes to a walk-in clinic. A week later he is subjected to x-rays and ultrasounds, during which a “large abdominal mass” is discovered, and is scheduled for an urgent CT scan due to the possibility of cancer.
During the 56th week, Greg undergoes the CT. The results, combined with that of the ultrasound, “raised the question of stage III testicular carcinoma, with spread to abdominal lymph nodes.”
One week later, Greg calls the walk-in clinic. He has not yet been scheduled for a follow-up to discuss the results. He finds out the physician at the clinic has left the practice to join one in another city. Greg is scheduled for an appointment later that day.
Another ultrasound is performed on his scrotum. The results show the lump is consistent with testicular cancer, and are faxed off to a urologist. Unbeknownst to the staff at the walk-in clinic, the urologist was currently “away for an extended period of time.”
Greg discovers this himself the next week, when he calls the office of the urologist and receives only a recorded phone message explaining the absence. He is then referred to two other separate urologists by the walk-in clinic, ultimately only going to the one offering the earliest appointment.
His legs begin to swell, and, 59 weeks after that first routine physical examination, Greg undergoes an orchidectomy — a removal of the cancerous testicle — in Calgary. The swelling does not stop.
Less than 72 hours after surgery, Greg Price, now 31, collapses on the floor of his family home. Attempts to resuscitate him are unsuccessful, and he dies from a blood clot.
A Break In The Chain
“It starts with recognizing that Greg was somebody who was pretty keen on being fit,” explains David Price, Greg’s father, who, like his son, is a private pilot and has been since 1976. “So, somebody that was able to communicate, and [who] was also pretty tuned into his own health.”
He is sitting with his daughter, Teri, at a coffee shop in Calgary on a rainy Thursday in May, six days before the screening at the Palace Theatre.
They’ve just recently returned from Vancouver, from another showing of Falling Through the Cracks, the first project of Greg’s Wings, the advocacy group they’ve started to make sure others don’t fall through the same cracks in the healthcare system that Greg did.
David explains that Greg’s journey began with a trip to a pilot’s medical, where the thickening of the tube in one his testicles — the epididymis — was first noticed.
“Ten months later, he had some issues with pain in his back and he thought that that was related to an athletic incident, or [from] lifting weights, rather than the two being connected,” says David.
“It took a long time to work through the system, and part of what lengthened that time out was breaks in communication, or breaks in hand-offs between people that were actually looking at his condition, or even long waits for tests.”
Greg’s story is one that highlights a prominent issue with the Canadian healthcare system — the problem with breaks in the continuity of patient care between medical offices and specialists when dealing with patients.
“If an airplane has an equipment issue anywhere in the world, I get told about it,” explains David. “In the healthcare system, the primary care doctor doesn’t know what happened to their patient when they go to emergency unless the patient actually comes back and tells them about it.”
It was within the first six months after Greg’s death that David, along with his daughter (and Greg’s sister) Teri Price, first connected with the Health Quality Council of Alberta (HQCA), an organization designed to measure, monitor and survey the health system in Alberta and to report the findings back to the government.
“They did an investigation into what happened, partially because they were doing some analysis on the continuity of patient care in Alberta,” says Teri. “So, they released a report that’s called the Continuity of Patient Care study, and it uses Greg’s journey to highlight the gaps in continuity that happen.”
The first report conducted by the HQCA, released in December 2013, was spearheaded by Dr. Ward Flemons and proposed 13 recommendations for improving the continuity of patient care in Alberta.
A follow-up report, conducted in 2016 at the request of the Deputy Minister of Health, found that at the time, 3 years later, many of the recommendations had seen little to no movement, with many still facing major barriers.
The recommendations, directed towards Alberta Health and Alberta Health Services, included “making additional investments in the provincial electronic health record and e-referral system to standardize workflow processes for all specialized healthcare services” for patients and practitioners; developing “policy and procedures that would support radiologists to expedite the care of a patient whom they find has a time-sensitive health condition,” such as in the case of Greg Price; increasing accessibility for after-hours care; and ensuring that, in the case of a patient death, “surviving family members receive the final report in a more timely fashion” following investigations conducted by the Office of the Medical Examiner.
Greg, who kept the extent of his illness from his family until six days before he died, was a victim of many of these breaks.
“It was a lot of grief, and sort of reflection on all of the ‘should-of, could-of,’ and wanting to ask lots of questions so we could fully understand what had gone on,” says David describing the time immediately following his son’s death.
“[Mainly], so that we could do a couple of things: Both, understand it, and then be able to start thinking about making sure that others wouldn’t get trapped in the same situation.”
Falling Through the Cracks: Greg’s Story
Following the study by the HQCA, Dr. Ward Flemons, the lead on the 2013 report who also teaches at the University of Calgary, approached the Price family about turning Greg’s story into an educational film, with the intent of using the finished product to reinforce the importance of teamwork and communication to first and third-year medical students.
The Price family accepted, on one condition — that they had control over its production to ensure its truthfulness to who Greg was.
Shot in only five days and completed in the fall of 2017, the final product is not your typical video module for teaching and learning.
Running 29 minutes, Falling Through the Cracks: Greg’s Story explores Greg’s journey through the healthcare system, noting the lapses in communication and breaks in the continuity of his care that may have exacerbated his untimely death.
It was written and produced by Andrew Wreggitt, and directed by Dean Bennett, both known for their work on CBC’s Heartland. Kevin McGarry, who currently stars on the series, plays the role of Greg Price. Playwright Rebecca (Becky) Shaw also helped write and produce the film.
Falling Through the Cracks was nominated for seven “Rosie” awards, put on each year by the Alberta Media Production Industries Association, ultimately winning Best Original Score – Drama under 30 Minutes for 2018.
“It has a big emotional reaction, and on all kinds of audiences,” says Teri. “The initial trigger for the project was just to impact medical students, but it was actually the second day of shooting, when some of the crew were showing me the stills of what they were actually capturing… and it was like: ‘Oh, these are not going to be isolated to medical education.’”
David explains that the film is tough to categorize because it is both true to the story of Greg and doesn’t embellish the dramatic side.
“The events and transactions that occurred are all true to the story,” says David. “There’s obviously more than 30 minutes involved … but it does a very good job of hitting the key points of the journey that could’ve had different outcomes or different impacts.”
Similarly, the film evokes a variety of responses.
When it was screened for first and third-year medical students, the result was anger — not at the film, but at Greg’s situation — because of things that shouldn’t have happened, but did.
“They’re probably not imaging that that’s the system they’re joining,” says Teri.
“The perspective, when watching the film, is a personal one, as opposed to a representative one. I’m not a nurse or a doctor watching this. I’m a parent, or a brother, or a child. It really changes the dynamic.” – David Price
Falling Through the Cracks was also shown to the Alberta Health Services (AHS) Executive Leadership team in February 2018, who Teri says were appreciative of the neutrality of the film.
“It’s not labelled up like ‘these are AHS doctors’ when they’re not. It’s just Greg’s journey,” Teri explains. “The film is very neutral.”
David notes that the most common response to the film is people wanting to share their experiences. He explains that these kinds of conversations are integral in generating conversation and involving the public to enact change.
“The perspective, when watching the film, is a personal one, as opposed to a representative one. I’m not a nurse or a doctor watching this. I’m a parent, or a brother, or a child. It really changes the dynamic.”
Greg’s Wings & The Co-Pilot Collective
To coincide with Falling Through the Cracks, the Price family started a not-for-profit organization called Greg’s Wings, with the film being the first project.
They’ve recently started another entitled The Co-Pilot Collective, with the long-term goal of taking on projects that further align with the enigmatic Greg Price, focusing at first on hosting healthcare-related topics and events such a film screenings and panels with experts.
“We grew up in a small town called Acme,” says Teri. “So, [Greg] was really connected with our local community and rural roots, but he was also an innovator. He had his own side-hustle he was working on, and he loved to brainstorm new ideas and really understand things from other people’s perspectives and help to encourage them to pursue their own passions.”
“Long-run, we’re hoping that’s what the Greg’s Wings organization will do. Right now, it’s mostly the film.”
The Co-Pilot Collective currently hosts screenings of Falling Through the Cracks, and the film is usually followed by a discussion panel with experts to discuss ongoing problems with both the healthcare system and the continuity of patient care.
The last screening, which took place at the Palace Theatre on June 5, 2018, featured a post-film panel with Dr. Ward Flemons, writer-producer Becky Shaw, Dr. Ewan Affleck, whose pioneering work in implementing an electronic medical record system for the Northwest Territories resulted in him being named to the Order of Canada in 2013, and David Price.
The primary focus was a discussion around increasing accessibility to a patient’s own medical records to help spot potential errors.
It was also a chance for businesses working to improve the healthcare system to network with the public. Companies such as the Calgary-based BrightSquid, which provides “confidential messaging and file sharing services to make patient information more accessible” to more than 39,000 practitioners and 56,000 patients every month, and Mikata Health, which uses “AI-powered tools” to take care of patient scheduling, data entry and phone calls.
Teri and David, Three Recommendations
Apart from the 13 recommendations proposed by the HQCA in 2013, both Teri and David agree there are three major implementations that must be addressed.
- Access to information
“We really feel like all the information needs to be in the patient’s hands,” says Teri. “The statistics on how much you remember when you leave a doctor’s appointment is scary. You don’t remember very much information at all. I don’t take a notebook in, but I quite often go in with a list of questions and don’t ask half of them, or more than half of them.”
“If we’re going to work together as a team, and this is the best way to get the best outcomes, then this information needs to be shared across [the board].”
- Learning from failure
“When something happens, there needs to be a full investigation, including all of the people who were involved, just so they can learn and [make sure] it won’t happen again,” says Teri. “The results of that should be shared across the industry so that other people can learn from it so they don’t make the same mistakes.”
“Other industries embrace that fully. I used to work in Oil and Gas, and it’s very much part of the safety culture. Greg was a private pilot, Dad is a private pilot, and he receives emails weekly or monthly.”
“It’s weekly on equipment and issues around that, and monthly around enforcement and accident investigations,” adds David. “As a pilot, it’s up to us to learn from that, but we don’t have the impediment of not having the information. It’s there. In the health system, there isn’t really an active production and sharing of [information] other than maybe within a small team, but not across the system.”
- Enforcing the need for “the team” in healthcare to include the patient, and to encourage accountability
“The biggest challenge in a publicly-funded, politically-managed system is that most organizations have become more nimble and flat, and function better at new challenges, at innovating and moving things forward,” says David. “But in an organization that has that other characteristic, where it is publicly-funded, is almost a monopoly, and it has the politician at the top of the pyramid, now that’s naturally not the same.”
“If you’re in the food industry, or if you’re in transportation, and you see something that’s going wrong, you’re empowered to put your hand up and stop, and cause a correction to happen,” David explains. “In the healthcare world, the internal characteristic and the hierarchy that exists is actually culturally-opposed to that, and historically opposed to that. It’s hard … for a patient to call a doctor by their first name and say ‘hey, I don’t think we’ve got it right.’”
“We need to close the gaps to make it a true team-based care,” says David. “We spend over 40 per cent of our provincial budget, over $20 billion, in the healthcare industry. Yet, we expect a quality organization [the HQCA] that’s supposed to be doing investigations and recommendations to function on less than $10 million a year.”
“This is actually ridiculous.”
Who are the HQCA?
The Health Quality Council of Alberta is a team of 35 people, based in Calgary, who act as a sort of watchdog, surveying the quality of healthcare in Alberta and sharing that information and data with the Alberta government. Their goal? To produce “a variety of frameworks that help the system undertake work in a more integrated way.”
Andrew Neuner, CEO of the HQCA, said in a telephone interview that although the HQCA may be small, they hold “pretty significant influence on the system overall.”
The purveyors of both the 2013 and 2016 reports that used the story of Greg Price to highlight the problem with breaks in the continuity of patient care in Alberta, the HQCA recognize that although some of the recommendations have seen little movement, they are still very much valid.
“Work continues to proceed,” says Neuner. “For example, we do know work is going in e-referrals. We do know that work is going on with the College of Physicians and Surgeons. They’re still working through some of the recommendations that were specific to them.”
Neuner cites the level of complexity for some of the recommendations as a reason for their slow movement.
“While, on the surface, [they] may seem pretty reasonable, they have a far-reaching ripple effect that touches a lot of different parts in the health system,” Neuner says. “So, that’s part of the reason why things don’t happen as quickly as we’d all like.”
Another reason cited by Neuner is that, in the health system, there’s “always competing priorities,” so attention can’t always be focused on those issues alone.
“I don’t want those to sound like excuses, that’s just the reality of a day-to-day large health system,” says Neuner. “But, I would also say that it’s one of the reasons why our final pieces of advice in the follow-up report was that the progress be monitored and reported back to Alberta Health, and that that reporting be made public.”
“It’s very important to us that the public be aware of what’s going on, and how progress is being made in these areas.”
Neuner notes that due to the size of the projects that need to be undertaken, such as in the case of implementing a new “clinical information system for the province,” it could take multiple years before full implementation.
Neuner, too, stresses the importance of public engagement when it comes to affecting change in the healthcare system. He explains that the HQCA is aware that patients want greater involvement in their care, that “they want to participate in making decisions about that care and they want to know that things are moving along in a reasonable pace.”
“Nobody wants to find out that somebody misplaced a referral,” says Neuner. “Or [that] somebody’s been away and hasn’t addressed it, which was the case in the aspect of Greg’s case that we did the review on.”
Neuner, who has seen Falling Through the Cracks “about 10 times,” says that although the story of Greg Price happened in Alberta, it is not uniquely an Albertan experience.
“This happens all across the country, and happens internationally,” Neuner says. “There are many people that will share stories, that will share their personal stories, or stories of family members or friends that have experienced similar things in the health system.”
“What the Price family have done just an amazing job at is putting it all together in a film,” explains Neuner. “I think the story is one that really resonates with the public, and I think as a result of this being shown is that there will be thousands, and tens of thousands, of people who will see it, and it will encourage people to be active, ask questions, not just take what they hear and not be involved in making decisions for themselves.”
“In that way, we will move towards a better system.”
How The Media Plays A Role
While the media shares a similar role to the HQCA, acting as that of a watchdog, Neuner explains that unless there are dedicated reporters assigned to covering healthcare, it’s hard to catch everything — especially the more positive facets of the healthcare system.
“We under-report the good things that happen,” says Neuner. “A lot of the good news in the system doesn’t make the front page of newspapers. That is unfortunate.”
“The other thing is… because the system is so complex, you just cant be on top of it all.”
For David Price, what is underreported by the media is the magnitude of the problem.
“If you were to go and look at the statistics that are reported relative to the quality of performance, and if you put ‘food’ in front instead of ‘healthcare,’ or ‘transportation’ in front instead of healthcare, it would be an absolute disaster,” says David.
“It’s not an Alberta-only, or Canadian-only problem. It’s a worldwide problem, and there’s a lot more now being told about what’s happening.”
According to a 2016 report published by the Canadian Patient Safety Institute (CPSI), 1 in 8 hospitalizations with a harmful event in Canada ends in death, with 1 in 18 hospitalizations finding patients experiencing harm.
“As a pilot, if an airplane has an issue and crash-lands, but nobody is killed, it’s front page news for more than that one flash around suppertime, right? Whereas, we’ve got people dying in Alberta… as a result of [errors in healthcare],” says David.
“The only way we’re going to fix it is by dealing with it.”
Teri, who has documented her own experiences in healthcare following Greg’s death, says she is still hopeful and optimistic.
“Reinforcing the need for collaboration will cause a shift,” Teri says.
David says the challenge still lies in the political side, and notes that one of the major hurdles lies in the disconnect between healthcare providers.
“We worked, for the first three years, really trying to shine a light on the people who are doing fantastic things, and they continue to do the best they can, and there’s a lot of great people in the system, but it’s not going to get changed from the inside out,” David says.
“It’s impossible to be changed from the inside out.”
Editor: Janice Paskey | firstname.lastname@example.org