Tales of Woe

From my memorable quotes pile: Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I’m so overwhelmed. Everybody thinks their thing is the most important. Can’t … Continue reading

Personal Health Goals

  As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s … Continue reading

Transitions – What you don’t know can hurt you

Still exploring communication across transitions.  This week speaking with clinicians. First, with case managers in an acute, short-term rehabilitation center serving people with recent strokes, heart conditions, or surgeries needing less than a month of intensive therapy. The transition points … Continue reading

Deconstructing the Tower of Babel

I’ve spent the week immersed in this communication dilemma in healthcare.   As I’ve said before, I’m amazed that any communication occurs in healthcare – a constant unfolding Tower of Babel. Way too big of a topic. Let’s narrow (as the … Continue reading

Engaged with Sax

Shopping for a new neurologist I had three screening questions: What’s your response time to emails? Do you use OpenNotes? How would you work with my acupuncturist? The first doc said, ‘I don’t use email, we don’t have a portal. … Continue reading

Changing habits – for people and payers

I love my health team. They help me stay tuned up with my chronic challenges and they get me through unexpected crises. Still, I  see them way too often. 3-5 times a month and I’ve never been an inpatient. Professional … Continue reading

What’s the Problem with the Experience of People at the Center of Care?

Wearing my many hats: e-patient, caregiver, nurse, informaticist, and leader, I am blessed with mostly positive experiences on my health journey.  At worst, my experiences are seriously annoying. This week, attending a benefit for MITSS (Medically Induced Trauma Support Services), … Continue reading

Uncertainty and Comparative Effectiveness Research

Last week’s post  began a discussion of managing uncertainty in the health journey. That journey has many decision points. We can make some of those decisions ourselves and we can rely on others to make some decisions for us – family, friends, health … Continue reading

Defining Patient and Family Engagement – Threads in the Fabric

I take part in many forums that use the term patient engagement. Most often it means patient compliance with doctors’ orders. I struggle that there aren’t terms for clinician engagement, clinic engagement, hospital engagement, or vendor engagement. The health journey is a series of relationships, … Continue reading

Clinicians are from Mars, e-Patients are from Venus

Are clinicians from Mars and e-Patients from Venus? My experience is e-patients and clinicians can agree that they seek best health. Yet there is such a disconnect, such frustration, so much of the time. Participatory medicine strives to bridge the gaps … Continue reading