Lessons Learned as a Patient-Caregiver Activist

Photo by Monica Melton on Unsplash

Patient-caregiver activism spans my 40+ year career and my many hats. As the first male public health nurse in Western Massachusetts in 1976, I established a walking route in inner-city Holyoke with the Holyoke Visiting Nurses Association.  I strove to immerse myself in the community of people I supported. This more profound understanding of their physical environment and social circumstances help me help them manage their chronic illness – diabetes, heart failure, spinal cord trauma, and strokes. As an Intensive Care Unit nurse manager in the 80’s I introduced open visiting hours for families. Up to this point visiting hours were from 1-2 p.m. and 6-9 p.m. Nursing staff felt that family would be in the way.  So, on the one hand, my nursing staff would say with pride, we are patient advocates, and then limit family access to their loved ones. Made no sense to me. Working as Director of Quality Management in behavioral health managed care in the early 90’s, I was able to form clinician and patient advisory councils to inform us on the effects of our policies and practices on clinician and member lives.   When my son, Mike, was recovering from brain and then lung surgery from metastatic melanoma, we realized as a family that recovery depended on us with little support from the hospitals or medical community. I still had never heard of patient-centered or patient engagement.

Now, I am retired – no longer an employee or a boss – and immersed in writing, speaking, and consulting as a patient-caregiver activist. I collaborate with clinicians, researchers, academics, policy makers, caregivers, entrepreneurs, designers, programmers, administrators. I have the opportunity now to reflect on the lessons I’ve learned about the craft of patient-caregiver activism as a catalyst for change. Let me share some of those lessons:

Activism includes a set of skills and attitudes

• Know my audience(s). Absorb like a sponge, introduce them to each other, and be a guest in their house(s).
• Clarify language. Use as plain language as possible. Learn my audiences’ language. Delight in the Tower of Babel puzzle.
• Build team relationships and hold up my end of the bargain. Maximize trust.
• Find the story that opens minds and hearts to science and mission – people have different brains and respond to  information differently
• Find seats at the table for the customers: patients, caregivers, and direct care clinicians.
• Be clear about how I’ll recognize success in my work and the team’s.
• Take three deep breaths often and keep at it. Relax and persist.
• Don’t be afraid to blow the whistle for ethics. If I don’t speak up, who will?
• Go for big gains and value the small ones. Celebrate often.
• My family and self-care first.
• Practice humor, humility, and listening.
• Mentor as I’ve been mentored.
• Appreciate that it’s all an experiment.  There is yet another way.

What lessons have you learned? Scroll down to bottom of the page to share.

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