decision making

Advocating – It’s Like Nailing Jello to a Tree

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(No – that’s not Dad in the photo – but this gentleman is quite representative!) Last week I shared notes from my father’s hospital bedside as he began his recovery from back surgery. The majority of his hospital stay was safe and successful, although we continued to have big problems managing his pain throughout. Dad was discharged to a skilled nursing center to convalesce and begin rehab. He’s well on the road to recovery. We have much to be thankful for. As mentioned previously, my work does not typically include helping individual patients with their healthcare challenges. I write and …

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Patient Advocates and HIPAA

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Lately I’ve run into questions and discussions about patient advocates or navigators and HIPAA, so it seems a good topic for today’s post. I’ll begin with a disclaimer: there’s no one on this green planet that can give you ALL the answers as they relate to HIPAA! No, not even the lawyers who live it every day. It’s complex and daunting. But there are some basics that might be useful. Here are the basics that can be useful to advocates: 1. It’s HIPAA, not HIPPA. HIPAA stands for the Health Insurance Portability Accountability Act. Notice, it doesn’t say anything about …

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What Do Your Patient Clients Expect from You?

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Ilene Corina is a long-time patient safety advocate who often sits by patients’ bedsides in hospitals to keep them safe during their hospital stays. A recent blog post of hers asks the question: when a patient or caregiver hires a patient advocate, what do happens if, despite everyone’s best efforts, the outcomes are negative? Of course, the answer depends on a number of factors, including the fact that not all advocate services are cut and dried and easy to define. Further, I have to think that sometimes an advocate is hired with one set of expectations, as understood by the …

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The Great Divide: The Haves and Have Nots

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(Originally posted June 2011. Updated June 2019) The health and patient advocates who are listed at AdvoConnection are all private practice advocates; that is, they work directly for patients and the patients pay them. Their services are not covered by insurance, their services aren’t donated or free. This is how these advocates make a living – they are paid by patients or caregivers. That seems to upset some people, and lately, it seems like a number of people have taken some sort of offense at that idea – as if patients or caregivers should not have the right to seek …

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Need to No – Giving Too Much

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One of my favorite things about patient advocates and navigators is that they are very generous, kind and giving people. They figure out what needs to be done, and they step up to the plate to do it. But one of my frustrations with patient advocates is that some are too generous, too kind, too giving. Too many have never learned where to draw limits, how to assess when they’ve taken on too much, or are in danger of taking on too much. They just don’t know how or when they “need to (say) no.” Conversations with two APHA members …

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It’s the Universe Calling: Time for Plan B

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A few months ago, I was invited to speak in June during a one-day program for members of the Pennsylvania Bar Association on the topic of recovering from a catastrophe. Attorneys who attend will learn about the things they need to do should something devastating happen in their lives (an accident, caregiving for a loved one, a fire, whatever….) About ten days ago, I heard from a dear dear friend that he has been diagnosed with a terminal disease. Prognosis, just a few months. I am devastated – my heart just aches for him, his family, and yes, for myself, …

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Why Do You Choose to Be a Patient Advocate or Navigator?

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During the past few years of connecting with patient advocates and navigators, I’ve asked dozens (maybe hundreds) of people why they chose patient advocacy work. Each person has one, individual, personal answer to that question, but there are an astounding number of similiaries. Among them: They believe they were cut out to help patients in need. They have had some sort of experience that tells them that whatever they’ve been doing to that point is no longer enough. Working with patients, helping them navigate and find improved outcomes from the healthcare system, feels like a higher calling. They don’t like …

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