Case 9: Canadian Blood Services' stakeholder engagement for organ and tissue donation

Canadian Blood Services
Chris Brennan, Manager, Stakeholder Relations and Communications – Organs and Tissues

Introduction

Despite numerous reviews in the past and some areas of excellence across the country, Canadian organ and tissue donation and transplantation (OTDT) performance nation-wide has remained unacceptably low and essentially unchanged for more than a decade. Almost 4,000 Canadians are currently waiting for an organ transplant that will save their life, while thousands more are waiting for cornea transplants to restore their sight.

In 2008, recognizing an opportunity to improve both system efficiencies and patient outcomes, the Federal, Provincial and Territorial (FPT) Ministries of Health asked Canadian Blood Services to take on a new mandate related to OTDT. Included in this mandate was responsibility for developing a plan for an integrated OTDT system that would improve donation and transplantation performance in Canada.

Given the wide stakeholder group, the independent nature of existing organizations and functions, the lack of comprehensive information about OTDT in Canada, and the diverse opinions in the OTDT communities, Canadian Blood Services decided to build extensive stakeholder engagement into its planning process.

Methods

From its inception, the stakeholder plan was three-pronged, using a parallel process to focus on three groups: OTDT health professionals, patients and the public. The information and perspective gleaned from these groups helped Canadian Blood Services identify the system design elements that have the potential to achieve breakthrough performance. This case will focus primarily on the public engagement aspects of the plan.

Health professionals

Three external committees were struck to guide the overall design work for a new system. One was a Steering Committee comprised of distinguished academics, medical administrators, and health policy experts. The other two were committees of experts — one focused on organs, the other on tissues — comprised of physicians, surgeons, representatives from organ procurement organizations and tissue banks, and other experts. These committees also helped navigate the broader health policy aspects of designing the new system.

Patient groups

Canadian Blood Services conducted extensive outreach to patient groups to ensure that their perspective was reflected in the conclusions and solutions being developed.

This process included developing strategic partnerships with national and regional organizations that collectively represent millions of Canadians. These organizations were engaged throughout the process via one-on-one sessions, group roundtable meetings, teleconferences and newsletters. Along with organ and tissue recipients, these organizations validated and challenged the observations and opinions expressed by those working in the system, providing strong input into the principles that should guide and underpin OTDT system reform.

Public involvement

Canadian Blood Services has always valued public involvement in the operation of the blood system. Since its inception, the organization has ensured that interested publics have an opportunity to contribute to decision making on issues related to the blood system through its national and regional liaison committee structure and open board process.

Building on this practice, Canadian Blood Services reached out to the Canadian public to gather input on the strategy and system design being developed to improve OTDT performance in Canada.

A series of nine public dialogues were held in key locations across the country. During sessions in London, Vancouver, Edmonton, Halifax, Winnipeg, Regina, St. John's, Moncton and Toronto, hundreds of Canadians representing diverse viewpoints and experiences provided candid feedback on their expectations of an effective OTDT system.

Dialogues were publicized through local advertising and media outreach. Local patient groups and networks were tapped to ensure their members were aware of the opportunity, while national patient groups assisted with communicating the information to their chapters and branches. Service organizations, health networks, religious institutions, colleges and universities, community centres, libraries, and other local resources were also contacted.

The dialogues included recipient and donor family speakers, as well as interactive learning sessions where the current state of the system was discussed. Participants then broke into breakout groups to discuss specific aspects in greater depth before presenting the results of those discussions back in plenary for further consideration.

In support of the public dialogue process, Canadian Blood Services launched a multi-media campaign to invite even broader opinions and insights. A "Kitchen Table Conversation Kit" was developed and published online to allow interested individuals and community groups to convene their own OTDT discussions. Participants were then invited to send their results to Canadian Blood Services.

An information website was also launched to help the public keep up-to-date on developments and to share information with their communities and Canadian Blood Services. All the information from that site, including Summary reports from all the public dialogues, is available at organsandtissues.ca.

In many cases, members of the public validated the opinions and impressions brought forward by the expert community, but their contributions also helped to emphasize particular areas of concern or those that needed further consideration. As a result, the public brought a unique and necessary perspective to the work, and its importance cannot be understated.

Outcomes and impact

Broad engagement yielded a number of benefits. It:

• gave the Canadian public (the ultimate beneficiary of this system) an opportunity to influence healthcare development;
• brought together a disparate community and achieved remarkable consensus about a vital component of the healthcare system;
• helped facilitate a collaborative relationship between OTDT-related patient groups;
• provided an opportunity to educate Canadians about the realities, challenges and disparity of the current state of the OTDT system;
• allowed Canadian Blood Services to learn from the experiences of the Canadian public;
• identified a group of extremely committed public champions; and
• resulted in a strategic plan (currently under assessment by Canadian governments) that is acknowledged to have overwhelming support and momentum from the community.

In addition to these benefits, broad engagement also created expectations and obligations of all stakeholders in the system. In particular, it:

• raised the expectation of the community for ongoing collaboration and engagement; and
• created high expectations of Canadian Blood Services and its commitment to transparency.

Lessons learned

With regards to its public engagement efforts, Canadian Blood Services quickly learned that the focus ought not to be on the "general" public but rather the "informed" public — those with a personal connection to the issue who bring to the dialogue process experience, passion and a constant reminder of whom the system must serve.

A multi-media approach was necessary to take advantage of the many grassroots inroads that could be taken with this community. Unlike its experience with the blood system — where a quarter of a million people actively participate — Canadian Blood Services realized that its mandate in OTDT required new thinking and strategies for engagement. Social media mechanisms that leverage "word-of-mouth" and "who-you-know" methodologies will no doubt become a staple going forward.

Throughout the engagement process the "interested" public demonstrated a remarkable ability to absorb complicated scientific and ethical issues, and in turn, generate thoughtful and well-informed opinions. Perhaps this is the key lesson from this process and evidence of why the public ought to be engaged in health system consultation. Canadians have strong and passionate expectations about their healthcare system and welcome a rich dialogue about its future.

Date modified:

2013-11-18