Thread by @purplemamabear

Thread: Thoughts on #valuebased & #patientcenteredcare

Within #healthcare & #advocacy there seems to be a great deal of discussion on both #valuebased care & #PCC. #Healthcare costs have skyrocketed’ & thus a need to #reduce. I am not an #economist but as a #caregiver I 1/

definitely have seen ‘waste’. From my POV costs will continue to skyrocket even if #valuebased care is implemented. One reason (again not an economist) is the vulture ‘istic’ aspect of industries profiting from our system. The other reason is that our system is not centered 2/

around the #patient or patients needs. Thus, if the value based metric is reduced hospital admissions, this, on the face seems straight forth, however if the patients needs are not taken into account but only focused on established metric, costs could (& I will argue often r) 3/

be more excessive. I could provide numerous examples where I’ve seen cost of care increase due to a value based model. My daughter was placed in value based program due to high costs. Her care was/is extremely high however due to the metric & how they viewed issue 4/

not only did the situation become life threatening for my daughter, but costs could have been avoided had a #patientcentric approach been taken. My daughter had #raredisease. In order to improve QoL had rare #transplant. There were complications & other procedures 5/

Ultimately my daughter gave up (just to note, she has given permission to share). This lead to physicians being upset with her, assumptions & labels which lead to her backing off even more. I desperately attempted to intervene & break this cycle however (being very blunt) 6/

many times HCP had made up their mind the cause of issues & determined on steps to ‘remedy’. Their focus for my daughter, decreased hospitalizations (which humorously would have been her goal also but she wasn’t asked). In order to decrease hospitalizations primary 7/

implemented a step plan in which only way she could go to ER was if she called in to primary and walked through several ‘steps’ first. Which was honestly quite asinine bc even before calling she had attempted those steps. So where did this lead? My daughter becoming much 8/

sicker before getting to ER which meant more critical care & longer stays. There were points I had to call ambulance bc she was waiting to hear back from primary office. Had there been a meeting where care was truly #centered around my daughter, where her input was truly 9/

asked for, this could have been less costly endeavor. My daughter could identify her biggest struggles BUT no one listened UNTIL they witnessed several times. IF our system was truly focused around #patients I postulate costs would be reduced but the system is not focused on 10/

individual needs. the population #metrics implemented to gauge ‘success’ blinds us, not understanding the needs/challenges ind #patients face. Perspective is that it is 2 time consuming. If upfront work focused on truly centering care around patient, costs could 11/

decrease yet we are still steeped in a patriarchal system culturally & have created metrics which falsely demonstrate success (imho). Take the #opioid #epidemic so many #measures being decrease of #opioids rather than a persons #QoL or #functioning. These metrics distract 12/

There is one hospital (imho) that has been successful in implementing care that is #PCC. They experienced decrease in cost also unfortunately from what I can find this has not been replicated. Unless care is truly #PCC unnecessary costs (and probable physical harms) will 13/

continue. The further we drift away from truly trying to implement #PCC I personally see costs increasing. When will we actually put #PCC into practice?
A #caregiver perspective 14/