Dragging or Walking?

  • If it was walking we would talk about making choices about health and wellness rather than Shared Decision-Making. Patients have thousands of choices to make. Worse than putting in a new kitchen. What patient or caregiver thinks about shared decision-making? I’ve never heard that term used by a layperson. We think about the choices we have to make, constantly — about life, not just clinical treatment choices. Can we afford it? Will I lose my job? Can I get there by public transportation? Do my cronies get it? Etc. etc. Several poster presentations at the conference included people with lived experience on the health team. They called them community health workers. People with lived experience who have expertise in communication can help us make choices. One presentation, Through Our Own Looking Glass: Teaching Families to Articulate How they Make Decisions discussed the shifting patterns and infinite variation in family decision-making. I can use this understanding of family dynamics. Caregivers can use this. I heard about primary care physicians having difficulty communicating with specialists? Doesn’t shared decision-making include docs sharing decision making with each other? Wouldn’t shared decision-making between clinicians help us all make better health choices?
  • If it was walking we would be talking about life literacy or empathy as well as health literacy. A great poster was about the Effect of Early Pediatric Disability Exposure in Medical Education. Medical students paired with families of children with disabilities. Again, lived experience increases empathy and understanding of determinants of health. Walking in others’ shoes. Another example: I heard a presenter talk about the percent of people who can read a bus schedule. Why aren’t we thinking about what percent of clinicians know how to get to their clinic by public transportation?
  • If it was walking we would be researching caregivers as well as patients. Patients depend on caregivers, caregivers quickly become patients.
  • If it was walking we would be asking so what to research — how can, how do patients, caregivers, and clinicians use research findings? How do we put research findings in media that people use day-to-day beyond pamphlets and handouts? Are media reports about research helpful or fake news? How can we tell? Does using the research findings work as the research suggests it might. Why aren’t we studying the outcomes of the choices we make? Do our choices get us where we want to go? Do they help us meet our health goals? Do they really solve or manage our clinical problems?
  • Would catch my attention
  • Clear and easy to understand
  • I’d be likely to remember this material
  • I’d be likely to discuss with others
  • I’d be likely to use these health results in my own health journey
  • I’d be likely to discuss with my healthcare providers
  • The study includes people like me.



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Danny van Leeuwen Health Hats

Danny van Leeuwen Health Hats

Empowering people traveling together toward best health. Pt with MS, care partner, nurse, informaticist, leader. Focusing on learning what works for people