From tragedy to trust in Canada
In summarizing the tainted blood tragedy in Canada, the award-winning journalist Andre Picard notes, ‘More than three million Canadians who received blood transfusions between 1980 and 1990 were unwilling participants in a lottery of death.’
The tragedy began in the late 1970s and early 1980s, when HIV and hepatitis C (HCV) found their way into Canada’s blood supply. By 1990, more than 1,200 Canadians had contracted HIV and approximately 20,000 people were infected with HCV. A commission of inquiry, led by Justice Krever, produced a comprehensive report that resulted in the establishment of a new blood operator, Canadian Blood Services (CBS), in September 1998.
Justice Krever’s report set out many recommendations for the new blood system focused on safety, finance, research and development and blood utilization. However, in Krever’s words, one recommendation set the stage for the restoration of public trust: ‘The public must have access to information about the policy, management and operations of the blood supply system and be represented in the decision making.’
To deliver on the principle of public engagement, CBS instilled mechanisms into the system from the beginning that would effectively engage the entire range of stakeholders including staff, donors, volunteers, patients, hospitals, healthcare professionals, community partners, advocacy groups, and the public. Staff involvement includes such forums as Town Hall Meetings and CEO Brown Bag Lunches. Media is involved through editorial board meetings with major newspapers and proactive media outreach. The Board of Directors is equally accessible. Two meetings per year are open to the public; any individual or group may address the Board at any meeting; and two Board positions are designated to represent consumers of blood products.
In addition, CBS has several standing committees made up of external stakeholders; one National Liaison Committee (NLC) and seven Regional Liaison Committees (RLCs). The NLC is an advisory committee to the Board and is co-chaired by the two Consumer Representatives of the Board. The NLC provides input into policy decisions, raises issues from each member’s unique perspective, and facilitates communication with the groups they represent. The RLCs ensure that Canadians have an opportunity to raise concerns and contribute to decision making from a regional perspective. One member from each RLC represents their committee’s interests on the NLC.
Apart from the standing committees, Canadian Blood Services regularly convenes consultations on issues of importance to the blood system such as organ and tissue donation and transplantation – a new national mandate for the organization. The public also has direct access to the organization through processes that have been set up both electronically on the website and in person through blood clinics across the country.
No matter what form the public engagement takes, CBS’s commitment includes the promise that the public’s contribution will influence the decision; sustainable decisions will be made by recognizing and communicating the needs and interests of all participants; the involvement of those affected by or interested in a decision will be sought out and facilitated; participants will determine how they participate; all information necessary for meaningful participation will be provided; and participants will be informed of how their input affected the decisions.
A decade later, CBS has largely rebuilt Canadians’ faith in their blood supply. A 2007 Ipsos Reid survey of the general public, found that 83 per cent trusted Canadian Blood Services—up from only 56 per cent in 1998. I sincerely believe that the strength of Canadian Blood Services is largely due to the engagement of stakeholders and the public in our decision making. To gain and maintain trust, it is critical that we are open, accessible and attentive to the people that we serve.