ONF and OBIA break new ground to give people living with ABI a greater voice in the conversation about their care

Talk about partnership…

Over the years the Ontario Neurotrauma Foundation (ONF) and the Ontario Brain Injury Association (OBIA) have partnered on initiatives that have improved the care of those living with acquired brain injury. In late 2017, ONF and OBIA realized that a new kind of joint effort would be needed to strengthen the voice of the ABI community. Today, ONF and OBIA share a staff member, Chad Debison-Larabie, who is focused on building new communications channels and programming.

Ruth Wilcock, Executive Director of OBIA, and Corinne Kagan, Senior Director, ONF Acquired Brain Injury Program, reflect on what prompted this new level of partnership and what changes are possible given this new focus and effort.

ONF and OBIA have worked together on many projects and activities over the years. What makes this approach to partnership different that work done in the past? What gap are you attempting to fill or opportunity are you seeking to take advantage of?

Ruth We are sharing “human resources” in order to bring into fruition a common goal. ONF and OBIA have always shared the goal of bringing the needs of those living with brain injury to the attention of decision-makers and influencers in government. The gap? Brain injury needs a stronger voice and presence in order to influence policy on care, treatment and support for those living with brain injury. This is an “invisible” disability which seems to make it “invisible” to policy-makers. We want to change that.

Corinne ONF has funded several projects in the past that were more research or project orientated. In the early 2000’s ONF provided support to OBIA in their work with the 21 Community Brain Injury Associations across the province. This new collaboration is different because we both want the ABI community to be able to speak with one voice. It doesn’t mean that there is only one key issue that will come to our attention, but as a community we need to strengthen the networks to be able to gather the opinions and understand the needs, issues and priorities of the full community.

Cultivating this ABI stakeholder network will be helpful to the work of ONF and OBIA by advancing priority issues, helping us learn more about research priorities and needs of people with ABI. We also expect to galvanize various stakeholders to provide advice and push information into the broader community. Overall, we hope to improve OBIA’s ability to speak provincially about what people with ABI need.

Sharing staff is perhaps the most powerful way to demonstrate to stakeholders that organizations are committed to make a difference. Have you received feedback and questions from others about this approach?

Ruth The feedback that I have received is that having a strong stakeholder network is essential to bringing about systemic change and, most importantly, that ONF and OBIA are the organization to do this. OBIA has always “been the voice” of those living with brain injury and understands at a very grassroots level what the needs of those living with brain injury are. ONF’s goal is moving research to evidence-based practices with the ultimate outcome of improving the lives of those living with brain injury. Both organizations are committed to making a difference but come at it from different angles and bring complementary experience to the table. Hence, all the feedback I have received is that this is a perfect fit for this type of partnership.

Corinne I’m hearing that it’s an excellent idea and that people look forward to getting involved and seeing this new network grow.

What is the key outcome you want to achieve through this particular partnership arrangement?

Ruth Simply put, to build an expansive stakeholder network enabling OBIA and those living with brain injury to have a strong voice and presence with decision makers, ultimately leading to better outcomes and access to services for those who have sustained brain injuries.

Corinne To strengthen the ability OBIA to speak to the priority issues of people living with ABI and the ABI community. To ensure that ONF’s work is grounded in the needs of people with ABI and the systems that provide care and support them.

How are you measuring the success of this approach?

Ruth For me the initial and also ongoing measurement is the number of people that we are able to engage coupled with the number of champions we are able to recruit and develop to carry the message into the broader community and to policy-makers.

Corinne I think there are short-term and long-term measures to consider. In the short-term, indicators of success might focus on building and tracking connections, i.e. the number of members in the network, the number of people engaged in or knowledgeable about ONF and OBIA activities.

Longer term we could measure success in terms of increased engagement in the stakeholder network. For example, people in each Local Health Integration Network (LHIN) being able to speak for the network, be active champions, and have the ability to connect to and inform people around the province on challenges, changes and progress on issues of importance to them.

I would hope the new stakeholder network will help develop initiatives in the ABI community. An example of this would be increasing participation in the Ontario Brain Injury Survey and sharing these results broadly. Ideally in the long-term we would like the network to grow into an ABI Alliance similar to the one that is functioning so well with those who live with spinal cord injury. Like SCI, the ABI network would actively represent people living with ABI, their caregivers, service providers and the greater community.