When people ask me about the benefits of collaboration, my first instinct is to say it’s a no-brainer. In my experience, thoughtful collaboration with nonprofits, clinicians, research partners, government agencies, and even companies in the private sector only leads to good things.
But when it comes to building constructive collaborations, the work of it is more nuanced. And for some organizations, there is a lot of reflection that needs to be done beforehand.
Pivoting Toward an Open Approach
At one point, this was the story of the Child Neurology Foundation where I serve as executive director and CEO.
When Child Neurology Foundation was launched in 2001, there weren’t nearly as many patient advocacy organizations as there are today. Because there were no partners to consider, Child Neurology Foundation took a very traditional posture of keeping our work inside our own walls. Some good things were accomplished, but there were limits to this approach.
In 2014, our board of directors was forced to take a hard look in the mirror. To put it kindly, Child Neurology Foundation had found itself in a rather isolated position and with a poor reputation, and any potential partners that might have existed were keeping their distance. At this point, there was a question about even keeping the doors open, let alone making plans to expand impact.
In a turn of events that I am eternally grateful for, the board of directors said “yes” to continuing Child Neurology Foundation’s work. In the now crowded field of pediatric neurology, our board members believed there needed to be a convener to bring together all the stakeholders. Even better, they believed that Child Neurology Foundation could — and should — be that convener.
The board penned a new mission that centered on collaboration, and, ever since, an open-armed approach to creating impact has been baked into our DNA.
The Undeniable Impact
The pivot to collaboration wasn’t meant to be a face-saving tactic, but rather we truly believed that our space needed a player that could act as the convener, and I am glad to say that we have lived up to it. But in the middle of all of this, the new foot we put forward has, in fact, improved our reputation: Three out of four families who interact with us report us as trustworthy or credible and would refer another family to us. This is a huge testament to how far we’ve come, and to the impact that collaboration can have.
One of our most successful collaborative projects was our Transition of Care tools. At the time, there were a lot of conversations about how Transition of Care needed to be improved, but no one had stepped up to do something past discussion. So, the Child Neurology Foundation convened a multi-disciplinary panel of authors and was the first group to offer a consensus statement and complementary tools on how to transition care from pediatric to adult doctors. From there, doctors were absorbing our tools into the EHRx, and advocacy partners were asking the Child Neurology Foundation to come in and talk to their specific patient community about our work. It was then that industry started to take notice of how big of an issue Transition of Care was, and how helpful these tools could be. We then invited industry, advocacy and clinical partners to take our tools and customize them for their patient population. Some people were blown away that we’d give away this resource free for adoption. But that is how we work – collaboratively.
What continues to surprise me is how the benefits of collaboration seem to be exponential. When we embark on a new partnership, we have no idea what introductions or ideas it might lead to.
Identifying Ideal Collaborators: What to Look for and Common Obstacles
This could look different for other nonprofit sectors, but there are several factors that the Child Neurology Foundation considers when assessing a potential collaboration.
- Lean in, be explicit about what needs to be done and agree that it falls within the scope of the mission. If all partners don’t come to the table with a laser focus still pointed at their own organization’s mission and patient population, you can fall into the kitchen sink approach of trying to tackle too much, or create an avalanche of “yes” energy that you later need to reign in. One way to guard against this is to identify a single engine to keep things moving: one person or entity needs to be accountable for keeping the group focused.
- Finances must be 1,000% transparent. This is a major concern and something that can kill a collaboration if it’s not clearly stated upfront.
- Trust your gut. As a leadership member at your nonprofit, you know how your organization runs, what your patient population is asking for, and what realistically you can accomplish. If you have a gut feeling telling you to explore something, or to run for the hills, follow it.
Reaching Out and Getting Started
If the idea of broad collaboration is intimidating to you, it’s OK. It’s scary to share control, be transparent and vulnerable, and trust a new partner with activities that can impact your audience. But the reward for a job well done is so worth it.
Know that you’re not alone. There are others out there who can help you along the way, whether it’s making introductions, facilitating tough conversations, or nudging you to break old rules that you thought you had to follow. In the end, collaboration is just a fancy word for “building relationships”. Focus on that first, and the value will come.
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Amy E. Brin, MSN, MA, PCNS-BC, has been working on behalf of children/youth living with special needs and their families for over two decades. She currently serves as executive director and CEO of the Child Neurology Foundation.
By trade, Amy is a board-certified pediatric advanced practice nurse. Before joining Child Neurology Foundation, she led the development and provision of care in pediatric and perinatal palliative and hospice programs. She served as a national consultant, building systems of care for children and youth living with special health care needs, with a specific focus on program development for complex, chronic care models of service.
Amy is a published author, award-winning speaker and trusted convener, which has earned her international recognition as a recipient of the Platinum Facilitation Impact Award from the International Association of Facilitators, as well as being elected chair of the Epilepsy Leadership Council. In 2022, she was appointed to the National Advisory Neurological Disorders and Stroke Council.