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Lessons Learned as a Patient-Caregiver Activist

By April 8, 2018Advocate

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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  • Jane says:

    Danny, I just love this. As we are building Lea’s care team and saying good-bye to Kikke, this list becomes more and more important-it’s flexibility and humanity first. It is all about love for Lea and her quality of life and my self care along with respect for all the team members who are part of the care family. Thank you for doing this work!!

  • Danny van Leeuwen says:

    Someone emailed me and added:
    -Someone is always brand-new to all this. Communicate with that person in mind.
    -Give the benefit of the doubt. People usually mean well even if it doesn’t come across that way at first.
    -If in doubt, ask. It never hurts to get clarification.
    -Take the time to do it right.

  • Terrific capture of the “improv journey” (IOW, we’re making it up as we go along) that is most of life, and most particularly the life of an advocate/activist in this most human of endeavors, improving healthcare for ALL humans.
    My evergreen lesson learned – the one that pops up frequently for re-learning, so’s I don’t forget I always need the lesson – is to remember NONE of my work is about me. It’s about everyone else.
    It’s nice to be invited to places where the common human (the ones the medical-industrial complex calls “patients”) is normally not found, but I’m always there to advocate for all us common humans, not just myself. Ego has no place in our work, but you need a pretty strong sense of self to withstand the pushback and frustration.
    Danny, I’m really glad we’re in this together. Looking forward to our next plotting session!