When will Ontario’s health care system finally focus on the patient?

By Steve Paikin - Published on December 4, 2015
Patient walking down hospital hallway connected to an I.V. drip.
Navigating the healthcare system can be an isolating, difficult experience for patients.



The people of Ontario spend $50 billion a year on the province’s healthcare system, and that’s only through their taxes. For many, of course, there are user fees, co-payments, drug costs and private insurance premiums on top of that.

You’d think all that money going to doctors, nurses, hospital workers and administrators would ensure we get the best care, and that the patient experience would be at the centre of that focus.

Think again.

There’s a growing realization that in spite of the huge dollars spent on treating sickness in Ontario, the patient actually isn’t at the centre of everything. And that’s becoming increasingly unacceptable given how much we’re spending and how unsatisfactory too many patient outcomes are.

Recently, The Walrus magazine convened its annual Health Leadership Dinner, at which several dozen of the leading figures in Ontario health care attend to debate the biggest issues of the day. The dinner operates under a form of the Chatham House Rule, meaning what’s said can be repeated, but not attributed to the speaker. I’ve moderated that discussion for several consecutive years now, and I can tell you, those rules do encourage a very free-wheeling, honest discussion. Over the years, several ministers of health, deputy ministers of health, assistant deputy ministers of health, along with numerous stakeholders in the system have been in attendance.

(Full disclosure: my wife founded and chairs the dinner; she’s a volunteer director on the foundation board of The Walrus).

The portrait of Ontario’s health care system that emerges is unsettling. “The fatal flaw in the system is a lack of integration of care and services,” one observer noted.

That observer’s check list looks like this:

  • Too many vital services are not covered by the Ontario Health Insurance Plan.
  • The system operates in silos.
  • It’s not remotely ready for the demographic changes that are coming.
  • Stakeholders operate as if the system is theirs, rather than the patient’s --- for example, patients still need to pay to get photocopies of their own health records.
  • The system is still burdened by 1960s architecture that often makes putting in new state-of-the-art equipment difficult.
  • Patients need a “Sherpa” to navigate their way through the system.

“The Ontario health care system isn’t in crisis,” this observer said. “It’s in stasis.”

Furthermore, patient input into making improvements is treated as secondary and frequently met with suspicion, according to another critic.

“When we meet with the ministry, we’re forced to sign confidentiality agreements,” this critic says. “The public doesn’t know what goes on because all the meetings happen behind closed doors. There’s a lack of respect. Pundits and experts are there, but people who represent actual patients are evicted. The government tries to intimidate us.”

Not only that, everyone who works in the health care system has a special interest group representing them:

  • Doctors have the Ontario Medical Association.
  • Nurses have the Ontario Nurses’ Association and the Registered Nurses’ Association of Ontario.
  • The Ontario Hospital Association represents the hospitals.
  • The Canadian Union of Public Employees and other unions represent other workers in the system.
  • Administrators get a seat at the table through Local Health Integration Networks and hospital CEOs.
  • The Ontario Long Term Care Association represents those who run facilities for those who can no longer live in their own homes.
  • Home Care Ontario represents those organizations that provide home care. 
  • The Ministry of Health and Long-Term Care has ample numbers of bureaucrats setting policy.
  • And, of course, the government steers the ship via the minister of health and an associate minister of health, not to mention the premier’s office and the president of the Treasury Board, who must approve all spending.

Who, on this long list, is supposed to represent the patient? Theoretically, of course, they all do. But too often, some critics say, the patient’s interests take a back seat to those of the stakeholders: The “players” in the health care system want things from government; government, in turn, tries to placate those stakeholders to the extent it can. As the $50-billion pie is divided among the players, who represents the end user so his or her say can be taken into account? 

Are things changing? Hard to say. Representatives from the Ministry of Health told the dinner that patients are invited to discussion tables to participate in policy-making sessions. (Critics say their presence is mere tokenism).  However, the Ontario Government will also hire a “patients’ ombudsman” sometime in the spring --- a new watchdog whose sole responsibility will be pursuing patients’ complaints with the healthcare system.

While most people I’ve talked to are encouraged by that development, they also note that’s a “downstream” solution. In other words, the harm has already happened once a complaint is laid. How can the province change the way it does things to ensure problems don’t happen in the first place -- in other words, find an “upstream” solution?

One idea that emerged at the Walrus dinner: perhaps the government needs to create an assistant deputy minister for the patient and caregiver experience --- someone whose job it would be to filter every new policy change through the eyes of the patient. Under the Liberals, there are 16 assistant deputy ministers in charge of several different sectors such as health system information, drug policy, communications, corporate services, human resources, negotiations, strategic planning, long-term-care homes, accountability and performance, and quality and funding.  But there is no one that high up on the ministry organizational chart whose sole mission is the patient experience.

One former university president in attendance at the dinner said it wasn’t until he created a “provost in charge of the student experience” that the yardsticks really got moved at his institution.

Is it time to create an assistant deputy minister for the “patient experience?” And if it isn’t, how will the patient’s voice genuinely be heard in an increasingly complex and expensive system?

Watch: The Hidden Patient on the Agenda