A Year in the Life of a Patient Partner

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When my daughter, Sophia, passed away two and a half years ago I really didn’t know when and how my life would evolve.  And I certainly didn’t know how I was ever going to re-enter my professional community carrying the loss of a child.
 
But just over a year ago I discovered a role that could provide me the opportunity to dip my toe back into health care and leverage my lived experience as a family caregiver of a child with a chronic complex condition. 
 
Here in British Columbia we are fortunate to have an organization called Patient Voices Network (PVN).  PVN is a community of patients, families, caregivers working with health care partners to improve our health care system.  Basically, PVN matches health care partners with patients who’s lived experience can contribute to that health care partners’ needs.  That could be anything from consulting on a new process or procedure, to sitting on working groups and boards, to participating in events and sharing personal story.  The opportunities are limitless and as more and more health care organizations come to understand the benefits of having patient partners, this idea is only going to grow.
 
Through PVN I applied to posting requests that I felt resonated with me and where I felt my lived experience would contribute best.  I also found opportunities on specific organization’s websites that where, again, I felt my lived experience would best serve.  Very quickly I got invited to partner with a number of health care organizations; one locally (within my own community), one regionally, two provincially, and two federally.  This may seem a lot from the outside, however, most of these groups meet monthly and even quarterly so the initial lift isn’t too much.
 
Where things can get tricky is when you start participating in more specific working groups within those organizations.  Very quickly your time can run away from you and you can very easily end up ‘volunteering’ chunks of your days and weeks.  Note, you are volunteering…the requests come in, and you chose which, if any, working groups or projects you’d like to support on top of your otherwise monthly / quarterly commitments.
 
This is a good sign.  Health care organizations are recognizing that patients’ voices can help improve health care systems and, in the end, support better health outcomes for those in community.  We have all experienced our challenges as a patient of the system so if our experience can support those working within the system, it can really be a win-win.
 
So here I am a year later and find myself reflecting on the past twelve months as a patient partner.  Naturally, some themes have emerged.  For me, those themes are: Impact, Expectations and Autonomy.
 
Impact: It is clear that having patient voices heard in a room has impact.  Hearing a personal story or understanding a process or procedure through the lens of a patient changes the energy and perspective of any project.  When a health care professional, a decision or policy maker can relate their work to a face, a story, it can add depth and meaning to the work they are doing.  It also changes the view…for both the organization and the patient partner.  I know for me, I understand far more clearly the challenges that health care organizations and employees have in their day to day than I did before being a patient partner.  Being a patient partner affords me a perspective I hadn’t had before and allows me to support the group I am working with better and more effectively.  In turn, the organization or group gets the benefit of understanding the impact of a procedure or process through a lived experience without risk or repercussions.  I think this is one of the biggest wins for including patient voices and partnering with those who have lived experience. Ultimately, we all want the biggest impact to be better health outcomes, better patient safety, and quality improvement.  And that can mean a variety of things depending on which seat you happen to be in.
 
Expectations: This is a hard one to share as we all have our own expectations based on our desire to improve health outcomes for ourselves and our families.  But expectations in relation to being a patient partner is where I feel one of the biggest challenges lie.  Quite often, having a patient partner engaged is new for an organization or group.  Frameworks have been developed by some who have already stepped into this realm but they are also being developed as we go along.  Engaging patient partners continues to be an iterative process and I suggest that will only continue. 
 
Expectations around time, resources, reimbursement, duty, have all definitely popped up for me this past year.  Depending on your skill set and depending on where an organizations’ experience lies in partnering with a patient, time and resource can be all over the place and a bit of a wild card.  I had to let go of one organization because they were at the very earliest stages of including patient voices in their journey and I just didn’t have the bandwidth to be able to give them the time and thought they really needed.  On another note, an organization pulled back on their commitment to a patient partner project because they just didn’t have the resources to be able to fulfill our expectations and support the projects’ needs.  And that is fair…
 
It is prudent to ask a lot of questions at the beginning of the relationship and keep those doors open to query and curiosity.  Many organizations have developed patient appreciation or compensation policies as the expectations of patient partners has far outgrown traditional volunteering.  You can check out the Canadian Institute for Health Research (CIHR) who has just released their recommendations.  It is a great reference point.  This leads to duty.  As mentioned, the expectations of patient partners continues to evolve and grow and this changes our duty.  This past year, I have been on health care panels, traveled to conferences, taught groups at institutions and health care faculties, participated in contributing to health care standards and quality improvements.  Yea, all that in ONE year.  And by choice…I wanted to test the waters, understand the dynamics of various health care initiatives, and do some discovery of what is happening in my own backyard.  This volume may not be a fit for everyone so it is important to know your own expectations and capacity.
 
I struggled to label my third and last theme.  However, came up with Autonomy.  And this is a controversial theme in the world of patient partners. 
 
Most of us come into a patient partner role with the greatest of intentions and the idea of servitude, as do the organizations that invite.  Ideally, we have shared vision and values with the goal of improving health care for the better; impact and expectations.  This is where it can get tricky and cause controversy.  As patient partners we are NOT employees of any health authority, agency, organization or individual group.  While we partner, we are not in any way, obligated to think, walk, talk like the group we have partnered with.  Which for all intents and purposes, is why we are there.  However, quite often in the last year, I have found myself in a place of what may be called ‘double consciousness’.  Where in order for me to have greater impact I need to fit into the culture of the organization I am partnering with while at the same time, balancing autonomy. 
 
As patients, a lot of our experience in health care has been patriarchal, top down.  That sense can be carried into our roles as patient partners where we can feel like a subordinate within the organization we partner with, or perhaps, with certain staff we have to collaborate with.  Often, I have felt at the mercy of the organization or their culture. There is argument on whether or not having patient partners takes away from the patients’ autonomy and ability to have integral impact.  I would have to say this is a risk and can and does happen.
 
I am not certain of a solution other than to have independent patient partner organizations, which do exist.  And quite often those organizations and members are seen as disruptors and more often than not, do not get invited to participate or collaborate within the health care system itself.  As individuals, we tend to stand on our own merits and my modality has been to build relationships within organizations and health care in order to have my lived experience’s purpose reach its deepest impact.  It also takes leadership, on the part of patient partners and the organizations we partner with.  In fact, leadership has been one of the biggest factors in shaping my experience as a patient partner.  We will leave that for another blog post!
 
This past year has been rich with learning, full of interesting opportunities and meeting incredible people doing incredibly impacting things.  I am and continue to be grateful that my lived experience has the opportunity to shift our way of thinking and improve the health care areas that I am passionate about.
 
I think that including patient voices and having patient partners can only improve our communities for the better.  And that while we still have lots to learn and there are some challenges we need to face, my own experience has been, for the most part, positive and drives me to continue this journey into the next twelve months.   I appreciate all the organizations I have had the privilege of collaborating with and look forward to continuing along in my journey of healing...and finding purpose in light of tragedy.