Reflections on Patient Leadership

I was a participant in the February 2021 iteration of the Patient Leadership Training Programme facilitated by David Gilbert and Kate James. This iteration of the course included 15 participants from 3 countries (England, Denmark, and Canada) and with diverse roles in health care (patients, family members, caregivers, and health professionals). I took a bit of time following its completion to sit back and reflect on this experience. At a time when I have often felt isolated, this was an opportunity for a zoom connection with patients, caregivers, and health providers internationally. The pandemic brought about both realities of isolation and connection. My choice to enrol in the programme provided an opportunity to learn and a way for me to positively frame my COVID-19 experience.

I was very excited to join what I nicknamed the February Friday gang, and was not disappointed in the experience. I was initially surprised at the pace and content of the sessions, assuming that they would follow a more formal format of presentation and discussion. Before joining, I read the e-version of David’s publication The Patient Leadership Triangle and easily found parts that resonated with me and confirmed many of my notions of what patient leadership entailed. Specifically, it highlighted the individual benefits that I have been fortunate to receive as a result of my volunteer work as a Patient Advisor here in Kingston Ontario Canada. While some of the theoretical material from the publication arose in the course, ideas and information arrived through the lenses of the participants rather than in a didactic delivery. This experience took courage, in my estimation, from everyone involved, as it relied on trust, honesty and a willingness to dive headlong into patient engagement issues. I truly enjoyed the diverse membership of the folks involved, along with the various styles of participation and theme-building that evolved. Two stories are provided to exemplify how this happened.

• I was initially taken aback by one participant’s straightforward feedback style about the use of medical acronyms and the preponderance of UK-centric discussions, but I could see that what perhaps was a cultural difference had distinct advantages and taught this ‘polite’ Canadian a useful lesson in the benefits of honesty and directness. I will recall this interaction at times when I sense my Patient Advisor voice is not being heard and a dose of inspiration is called for.
• Throughout the month-long time frame of the course, participants emailed publications, resources, and ideas to one another, creating the opportunity to connect in more depth about diverse health care models, programs, and research initiatives. One participant thanked me for sharing a specific story with the group on the theme of relationship-building through food – specifically bringing Rice Krispies squares to a hospital team meeting. The psychiatrist at the meeting was delighted and admitted that this was a favourite childhood treat. This gesture marked the beginning of a positive link between us, the effects of which spilled into meetings. While I hesitated to share what might have been seen as a simplistic portrayal of relationship building, the discussion that ensued within the February Friday gang was about finding common humanity and confirmed my longstanding conviction that community can be encouraged through simple gestures. Recalling the sense of confirmation I felt from my patient colleague will encourage me to share such gestures in future.

In retrospect, I can see how we developed over time into a group that was cohesive yet respected the distinct qualities of each person - what terrific modeling for patient-provider collaboration! The ‘checking-in’ process – an opportunity for each person to share a snapshot of their mindset or state of wellbeing/illness, at the beginning of each session, really took on a life of its own. It felt almost cursory at first, but by the end I was one of the people who likely benefitted most from this part of the process. When I listened to others, and then shared my own painful emotions and experiences at the beginning of our last session, I felt supported and understood despite offering vague details. This was a very unusual experience for me – considering that we were separated by geography, roles, health care systems, communication styles, and life circumstances. But the common denominator of being caring human beings, devoted to improving health experiences and outcomes while in the midst of a pandemic, served to bring unity and common purpose to our discussions. This was powerful in its effects for me.

If I had to pinpoint what principles I have arrived at relating to patient leadership, from personal/professional experience and with this course in mind, I would say:

Relationship building through:

• speaking bravely and honestly
• modeling compassion
• seeking out humanistic common denominators
• demonstrating and expecting respect and
• engaging all health care partners around the practice of equity

I found David’s leadership to be kind, sensitive, flexible, and supportive. Clarifying when needed, curtailing when necessary, encouraging if helpful, and allowing silence, all helped to create an accepting and safe space for our discussion and learning. Kate was incredibly kind, honest, and considerate - helping with technical challenges while contributing her life experiences and wisdom to the discussion.    I appreciated that several group members reached out and offered to connect when I was struggling with health system related issues. I was left wishing that there would be an opportunity for the group to have an in-person time together across our three countries, as there were moments of connection that I would like to have fostered. I will keep my collection of email messages with the hope of returning to them in future to reconnect and continue learning. I hope to see these folks again in David’s Virtual Common Room!