Health ALLY
When I’m not actively working on clinical trials, I’m doing private patient aLLY work. What does that look like?
It looks like helping you figure out what questions to ask at your appointment.
It looks like translating the medical jargon into something that is understood by you and your family members.
It looks like showing you tangible steps (what it looks like) to follow the medical advice your medical provider has given.
It looks like peace of mind.
Cool idea! How did this start?!
I’m glad you asked! This idea came about years ago when someone close to my husband was diagnosed with leukemia. He was placed in ICU and his wife was sent home due to his “neutropenic precautions.” They had explained to her that that meant he has no immune system. She was hysterical. She thought he was dying. She was stressed beyond belief, at home, alone, unable to get any answers.
When I heard about this, I was upset on her behalf. What a horrible thing it is to not understand a situation so serious. I explained to my husband that “neutropenic precautions” means that the patient doesn’t have any ability to fight an infection. Any little bacteria that is normally on the surface of our skin could be potentially fatal for him. He wasn’t dying. She just had germs on her.
His face dropped. “Are you serious?”
“100%. She just has germs on her that could hurt him right now.
I couldn’t stop thinking about how access to that information could’ve saved her days of agony and worry. The hospital staff *thought* they communicated the situation. Sometimes, the simplest medical terminology a physician can use is still over the head of the average lay person. That’s where I come in. Think of me as bilingual, in that way.
Case Study #1
Mid-70s male
Patient has surgery to remove kidney stones. When the surgeon comes out to let us know it went well, I ask about what pain medications have been prescribed for the patient post-op. The surgeon told me that the patient’s pain would be well controlled by the “Norco 5” he had written. I let the surgeon know that this patient is a chronic pain patient and takes Hydrocodone 10mg at home for basic maintenance and he would need something stronger on his med list - in case he needed it.
That conversation could’ve happened when that patient was in agony in the middle of the night and no doctor could be found. A night nurse would have to call and wake up the surgeon to ask if they’ll give an order for an additional pain med. I don’t care who you are. If you wake me up to ask me for something, you’re not going to get my highest thought function or any niceties. It was a better situation for that patient for that conversation to happen while he was still in post-op recovery. The surgeon wrote an additional pain medication as a result of this conversation that the patient ended up needing. Crisis averted!
Case Study #2
Mid-20s female
Patient has been experiencing heart symptoms. She has been to the ER several times by the time I am brought in. She seems to have unpredictable symptoms that can be debilitating. At her first cardiologist appointment, she doesn’t know what questions she has. She is asked to wear a heart monitor for 24 hours and everything comes back fine. She is frustrated and knows something is wrong, but can not identify what it is. I advise and encourage her to advocate for herself. She clearly feels something is wrong. This assertion leads to a 30-day test. During this 30 days, findings are made which necessitate a referral to a cardiac specialist out-of-state. I let the patient know how this out-of-state specialist would be different than an in-state cardiologist and helped her to develop her list of questions while she awaits her appointment. I will walk through this entire process with her - from scheduling appointments to follow up.
Healthcare shouldn’t be a mystery. If this sounds valuable to you (as a provider/facility), or if you could use an advocate yourself, contact me! I’d love to help. Really. I’m passionate about helping people get the most out of their healthcare.