Decisions about health policy often involve difficult trade-offs. This is especially true when assessing new health technologies and medications, where funding one item can mean not being able to fund another. These decisions often force policy makers to go beyond scientific considerations of a drug’s effectiveness, and address broader ethical and social considerations.

Recognizing that drug funding decisions should incorporate the values, needs and attitudes of Ontarians, The Transparent Drug System for Patients Act passed in 2006 mandated the creation of a citizen’s council to advise the Executive Officer of the Ontario Drug Benefit Program.

The Ontario Citizens’ Council was established in 2009, based on a public engagement model pioneered in the United Kingdom.

The citizens’ council is made up of 25 Ontarians (12 seats are currently vacant), with backgrounds like teaching, finance, publishing and communications. To date it has met four times and provided the Ontario Public Drug Programs (OPDP) with recommendations on issues such as funding drugs to treat rare diseases.

Bruce Raymond, a retired broadcaster who served on the council until last year, believes the council is important for Ontario. “This is an opportunity for the average citizen to act as a prod to elected officials and government staff to remind them that they’re serving a very wide and eclectic community,” he says.

The citizens’ council is unique in Canada and those involved believe it is a promising development. However, the council has not met in over a year, and some councillors are concerned their input has not had the impact they expected.

Public engagement in the United Kingdom

The Ontario Citizens’ Council is based on the public engagement strategy used by the United Kingdom’s National Institute for Health and Care Excellence (NICE). In 2002, NICE established a citizen’s council to provide it with a public perspective on overarching moral and ethical issues in health policy.

NICE’s citizens’ council meets over a weekend, and the councillors hear from a range of experts on an issue, with the opportunity to ask questions. The councillors then deliberate about what they have heard. After the weekend has concluded, the councillors produce a report, which may include recommendations on issues where there was consensus, and also reports where there was disagreement. Ontario’s council follows a similar model.

NICE’s citizens’ council has met once to twice a year since being established, and has produced 15 reports on topics such as smoking and harm reduction, patient safety and financial incentives for healthy behavior. According to Tonya Gillis, a NICE spokesperson, these reports give NICE’s committees snapshots of public opinion on a given issue, which are taken into consideration when NICE does its work.

The Ontario Citizens’ Council’s work to date

Since being formed in 2009, the Ontario Citizens’ Council has met four times, and has produced reports on funding drugs for rare diseases, managing Ontario’s drug formulary, the values that should guide the stewardship of the Ontario drug formulary and private drug insurance.

These reports have been presented to the Executive Officer of the Ontario Public Drug Programs, who has responded to each. According to an email from David Jensen, a spokesperson for the Ministry of Health and Long Term Care, the OPDP has accepted a number of the council’s recommendations, including revisions to Ontario’s Compassionate Review Policy to provide early access to drugs that are under negotiation with the manufacturer.

The last meeting of the citizens’ council was in November of 2011. The OPDP planned to recruit 12 new council members to replace councillors whose term was up, but no new councillors were appointed in 2012. The council has not met in over a year, and the Ministry of Health and Long Term Care’s website lists no scheduled meetings for 2013.

Ongoing challenges

The council’s chair, Gerri Gershon, is pleased with the council’s work to date, saying “everyone who has been involved with the project agrees it is a good idea.” She is also aware, however, that the council has faced some difficulties. “I have a lot of criticisms,” she says.

Chief among Gershon’s concerns is confusion between the council and the government over the council’s mandate. “We have not quite found what our purpose is,” says Gershon. “In the case of the first issue the council was asked to look at – drugs for rare diseases – the decision had already been made. It was informative for the government, because we confirmed a decision that had already been made… but is that what we’re for?”

Jim Lavery, a researcher at St. Michael’s Hospital who evaluated the citizens’ council over its first two years, agrees that there is some vagueness in the council’s mandate. He also points out that many councillors have deeply held beliefs about democracy and that for many of them their selection was “a profound opportunity to speak directly to government and be heard.” As a result, he says, many of the councillors he interviewed expressed concern over whether and how the council’s reports would be used in the decision-making process.

Another challenge arose in trying to use the council to inform government decision making on breaking issues. Diane Macarthur, executive officer of OPDP, tried to gather the council on short notice last year to provide her with advice on how to respond to the introduction of generic oxycodone, but it proved too difficult for the council and government to coordinate. With councillors from all walks of life and spread across the province, mobilizing it on short notice may not be feasible, which suggests greater clarity is needed on the kind of issues the council can best address.

Also of concern to Gershon is how long it has taken the OPDP’s staff to recruit new members to the council. “It’s been incredibly slow – we’ve not met in a year. I think the council can provide really good input,” she says, “but it seems like it’s low on the scale of priorities for the government.”

Jensen insists, however, that the Ministry remains committed to the work of the citizens’ council. He writes that new councillors have finally been recruited, and that planning for a meeting in summer of 2013 is now underway.

 “A success in the making”

In spite of the challenges of its first few years, Lavery is confident that the citizens’ council is a “success in the making.”

“Despite their frustrations with some aspects of the process, everyone on the citizens’ council felt it’s a positive step for the province,” says Lavery. “There is a lot that has been done very well – the council has the independence to craft its own reports – the deliberative process was very productive.”

Excerpt from Ontario Citizen’s Council Brokered Dialogue Evaluation (Film by Wendy Rowland).

Raymond believes the citizens’ council has made important contributions to date, and that more engagement of its kind is needed. “Nearly every branch of government could benefit from this kind of work,” he says.

Janet Parsons, a researcher at St. Michael’s Hospital who co-led the evaluation of the citizens’ council believes that as with any new process, some shortcomings were identified, but that these can largely be addressed through improved communication. “Many of the concerns expressed can likely be diffused with some relatively small improvements in communication and management of the process. This would go a long way to enhancing the experience for the councillors,” she says.

Parsons hopes the process will continue: “When you look at the quality of the participation these citizens are making, it’s inspiring. They’re wrestling with incredibly difficult issues, and making very thoughtful contributions. This could be a huge benefit to the province.”

Gershon agrees, and hopes the council can get back to work soon.