Patients and Family Caregivers as Knowledge Brokers; Fit or Fad?

Ever since my daughter, Sophia, passed away I have struggled with…what next?  I have spent 16 years as her primary care giver while juggling a variety of professional careers.  I now feel at a loss of how and where I go from here.
 
This past year I did begin to explore where my lived experience as a caregiver may complement the world of healthcare.  I became a patient partner for a variety of organizations; some federal, some provincial and some local.  I have the privilege of contributing to global standards in patient engagement, of working across health authorities to lead patient priorities and to teach patient oriented programs within medical organizations.  The vast majority of these opportunities are volunteer.
 
When I began volunteering decades ago, it was mostly sitting on Family Advisory Councils, Boards or showing up at an event to share our story , or help ‘day of’.  The total hours per month were maybe 3-4 max.
 
Over the last few years, patient partners are being asked to contribute in ways that are far more complex requiring more time and acumen.  And this needs to continue.  I think we all agree that collaborating and co-creating in health care allows for better health outcomes.  Insert your own research links here…
 
Some organizations do have robust patient appreciation models and honorariums, and I am always reimbursed for my own incurred expenses.  Yet, I mostly volunteer because I am passionate about contributing to meaningful change in our health care systems.
 
So this leads me to patients and families as knowledge brokers.  Anyone who has been or is a patient or family caregiver knows we spend an inordinate amount of time in dialogue with health care professionals, medical practitioners and community support workers in order to express our values and priorities along the way to get the best care possible.  If you are someone with a rare or complex disease, quite often you are the best if not only person who can explain your disease and its impact.
 
Knowledge Translation or KT, is a broad term for activities involved in moving research into the hands of the people and organizations who can put it to practical use.  Knowledge Mobilization (KMb) refers to moving that knowledge into active use. KMb is all about making connections and is a proactive process that involves efforts to build relationships between producers and users.
 
A Knowledge Broker is an intermediary and short of echoing Wikipedia’s definition, a knowledge broker’s key feature is to facilitate knowledge exchange or sharing between various stakeholders.
 
Speaking from my own lived experience, I became a knowledge broker in the health and well-being of my daughter.  At any given time, we were being seen and followed by no less than half a dozen if not more medical departments (neurology, endocrine, gastro-intestinal, orthopedics, renal, et al.).  The list can go on and on.  Toss in community support like nursing support services, physio therapy, infant development, speech therapy just to add fodder to the mix.  I had to become an expert knowledge broker to ensure my daughter received the best care, at the best time and in the best way.
 
As much as I struggle with the last few months and weeks of Sophia’s life, I do feel Sophia received the best care, at the best time and in the best way.  The relationships and connections we had developed over the years saved Sophia from suffering as much as we could. 
 
Patients and family caregivers ARE knowledge brokers.  It’s neither fit nor fad.  We have had to learn on the fly with little information or tools along the way.  Evolve us into patient partners and that brokerage becomes wider supporting researchers and leaders in health care in developing and disseminating valuable research to have more effective health outcomes.
 
And now here is my challenge…it has come to my attention that I may be over qualified as a volunteer, yet, I am seemingly under educated to do this work professionally (no Masters in Health Sciences).  While some may argue that tacit knowledge is difficult to transfer, I would argue that as a patient / family caregiver, it is quite the opposite and that partnering it with explicit knowledge is a powerful combination that can and does serve any organization willing to open their doors to the opportunity.
 
I have a unique skill set that combines this lived experience, tacit knowledge, along with explicit knowledge that I have gained both in my professional health care career and through the various patient partner roles I have undertaken the past few years.
 
Short of tossing my resume up on here…I am looking for an organization that may be open to creating an employment opportunity for this enthusiastic, articulate, proactive patient partner who has the capacity to contribute a strong skill set to advance health outcomes and health systems and to improve patient experiences.
 
You can find me @beverleypomeroy (twitter and IG) or email [email protected]
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