I am the child of holocaust survivors. Recently I’m hearing more about my mother’s life as a German Jew in hiding in Netherlands for her teen years. It strikes me as an empowered, engaged ePatient how our different life situations change the meaning of ePatient. In her case, survival was paramount, then boredom and fear. Isn’t that health? She tells about surgery for my grandfather on a kitchen table. Wasn’t she an ePatient? What I think of as health is very different. I am white, comfortable, loved, with little fear. I’m a worried well person with a chronic disease. I focus on other portions of the health continuum: meds, appointments, weight, diet, balance, stamina. My friend Cristin Lind’s blog Durgatoolbox dramatizes this lopsided continuum in her son’s care map. The similarity for each scenario is that best health is hugely more than medical institutions address. No matter how much I try, I can’t get my brain around what my mother experienced. I can’t get my brain around what Cristin and her family experience. Yet I can pull threads of understanding, empathy, compassion. Scents of our commonality. How do we share ourselves as we are ePatients? How can we help professionals on our teams pull those threads, whiff those scents?
Get New Posts via Email
Your support is appreciated
Subscribe to my YouTube channel:
Search This Site
learning People at the Center of Care Advocates choices Blue Button improv Nursing social media OpenNote adherence transitions ePatient EMR perception lived experience community engagement Rest Quality Measures Exercise health partners technology threshold music haiku palliative care Mentoring habits standards PCORI Community Health mindfulness MS culture interoperability consent Medical Record grief sax superpower leadership caregivers relationships balance care planning Behavioral Health Communication Giving policy evidence informed decision-making resilience customer service Pharma shared decision making storytelling magic lever The Quadruple Aim employment end-of-life Pain questions immigrants PROM goals Outcomes Standard Health Record entrepreneur health literacy Politics access multiple sclerosis Simplicity Care Partner health team innovation research Pregnancy Health Planning medication safety cost ONC chronic pain Best health fear Determinants of Health Just-in-Time decisions Surveys Fibromyalgia catalyst Data Recovery PHR grace simulation caregiving portal HIT disability