In 2005 OPSEU confronted former Ontario Health Minister Elinor Caplan with a series of anecdotes provided to us by patients in the Niagara area. The stories dealt with problems home care patients encountered when their long-time home care provider – the Victorian Order of Nurses (VON) – was replaced through a Community Care Access Centre (CCAC) competition.
None of the winning bidders had any prior experience – or staff – in the Niagara region.
Caplan had been appointed by George Smitherman to conduct a review into the competitive bidding system for home care.
At the time Caplan dismissed the anecdotes, telling us “they were just stories.” She said the nine stories we had received through an OPSEU hotline represented a handful of the hundreds of clients served in the region.
Now Caplan has resurfaced as a member of an organization that claims to be the voice for Canadian health care patients.
Begun by Sholom Glouberman, the Patients’ Association of Canada received charitable status in January and launched their first conference in February.
While the PAC claims to be a voice for patients, the minutes from their most recent meeting distinguishes them as an educational organization, not an advocacy group. However, Glouberman also writes that “patients too, need organizational support to bring their perspective to help the system change and modernize. They cannot do this as individuals.”
All of us could consider ourselves as patients, however, the PAC appears to be teeming with the kind of individuals they claim are already influencing health care decision-making, including professionals, policy makers and politicians.
The organization’s four-person board is a case in point.
Glouberman is “philosopher in residence” at the Baycrest Centre for Geriatric Care and is an adjunct professor at the University of Toronto’s SchoolofHealth Policy, Management and Evaluation.
Vytas Mickevicius, who serves as treasurer, claims to have had a career in the broader health sector, particularly with hospitals. In fact, he was the Executive lead for e-Health on the Local Health Integration Network’s e-Health Council. Along with Glouberman, Mickevicius is also an adjunct professor at the University of Toronto School of Health Policy, Management and Evaluation.
Neil Stuart serves as VP of the Patients’ Association. Some may know him as Chair of the Ontario Hospital Association’s Governance Committee, something he left off of his on-line PAC “autobiography.”
The last person on the PAC board is Dr. Elke Grenzer, who teaches at the University of Waterloo. According to the Culture of Cities website (an organization for which she is a founding member) she is co-editing a volume on the culture of birth and writing on jurisdictional disputes between midwives and obstetricians.
The group claims to have some 800 members, although 30 are up on their web site accompanied with “autobiographies.” Despite claiming to be a national organization, almost all 30 have connections to central Ontario, including several to the University of Toronto.
The list includes other academics, students, health care consultants, a lawyer, at least two physicians, two registered nurses, and several individuals who have had past connections to the Ministry of Health – including Caplan, who was Minister, and Ted Ball, who was Chief of Staff to former Health Minister Larry Grossman.
The group intends to work on patient advocacy guide, using work from Michael Decter and Francesca Grosso as a starting point. Grosso was director of policy for former Tory Health Minister Tony Clement and Decter is former Deputy Minister of Health under the Rae NDP government.
Funding for one part of their work – physician “Patients’ Choice Awards” – is provided by the Ontario Medical Association.
The PAC states that “the core of PAC’s mission is to listen to the health experiences of patients and those who care for them.”
Mrs. Caplan may need to think of this listening as more than “just stories.”
Patients Association of Canada: http://patientsassociation.ca/
Read some of the stories Elinor Caplan didn’t want to pay attention to:
http://www.opseu.org/campaign/von/storiesall.htm
More on Competitive Bidding: www.whatwillyoudo.ca
OPSEU Diablogue 
Why was the Patients Association of Canada (PAC) silent about the “hospital secrecy” law?
The “hospital secrecy” law, which passed in May, is an amendment to the freedom of information act, which allows hospital executives to withhold hospital quality information from the public, including about system failures such as C. difficile outbreaks. This amendment curtails access to information and transparency of our public health care system.
The PAC did not join other patient groups, civil rights groups, public interest groups, unions, church groups and citizens in testifying against the “hospital secrecy” amendment at Queen’s Park, nor did they submit a public letter to the legislature opposing this amendment as did 500 nurses and citizens.
It certainly raises questions if members of the Ontario Hospital Association (OHA) and Health Policy Management and Evaluation (HPME) faculty are running the board of the Patients Association of Canada (PAC), an organization they say is “patient led and patient governed”. What exactly is a patient in that context?
The Ontario Hospital Association (OHA) lobbied successfully in favour of the “hospital secrecy” amendment to the freedom of information act. OHA president Tom Closson “persuaded” Health Minister Deb Matthews to include this “hospital secrecy” clause in the government’s budget.
Ross Baker, OHA spokesperson for the “hospital secrecy” amendment, is a sociologist and professor in the Health Policy Management & Evaluation (HPME) faculty at the University of Toronto.
Patients do need to organize for more of a voice in defining the health care agenda in democratic terms. We need greater transparency (and less “hospital secrecy”), greater independent oversight, more public consultation and more mechanisms to learn from patients’ safety complaints so that we don’t repeat them.
To do this, we must be mindful of any potential conflict of interest.