Rare conditions, syndromes and diseases can include a really long and winding road; especially during the diagnosis period. Rare doesn't mean there isn't a diagnosis, it just means more thought and referrals for second opinions or referrals to specialists are... Read more →
This guest post from Nightfall (a cloud-native data loss prevention solution) is written for organizations that partner with those in the healthcare industry, but I share this post to help educate consumers. One reason is I often hear "you can... Read more →
Too many consumers of health care services feel stuck. They know something is wrong, but their physician (or another clinician) doesn't find anything or suggests a diagnosis or treatment that just doesn't seem to fit. While we don't want to... Read more →
I'm teaching this week - health informatics to nurses, public health and health administration students. Last week we discussed standards and interoperability; and it reminded me of a story. The memory was triggered by student discussions. One said it must... Read more →
I was recently asked how did I learn to advocate for myself as a patient. This made me reflect on my career in health administration, where I recognized the importance of patients advocating for themselves early in my journey. In... Read more →
My online support groups have given me tremendous new insight into healthcare social media. More specifically, about how patients and family caregivers use these tools to get advice on their challenges, threats and needs. These online networks have revealed opportunities... Read more →
"Joy and woe are woven fine." - William Blake There is a wonderful book for caregivers that offers expert advice ... from a caregiver. It is focused on her experience caring for someone with Alzheimer's, however, the experiences and advice... Read more →
As a child, I attended AA and Alanon meetings with my grandparents whenever I was visiting over the summer. It was what we did, especially since my "born again" recovering alcoholic grandfather took pride in helping those new on the... Read more →
Years ago, as I prepared to write a book on use of social media in healthcare, I signed on and really liked FourSquare. They split the app a couple of years later and it lost value for me. But, I... Read more →
Being an activated and engaged patient means you are constantly learning and becoming a better self advocate. Just when things are sailing along smoothly, BOOM! My new learning has to do with insurance coverage and the start of each new... Read more →
In the heat of the moment and emotion, we can all say something ugly. We are human. However, what we say, or tweet, does provide a glimpse into our innermost thoughts and the true self. Lashing out when someone doesn't... Read more →
Change is good
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