The patient speaks...
The fact that even though he says I am a miracle and that most people with Stage IV metastatic breast cancer do not survive 10 years and that it is wonderful that he see's me as a great success but I feel terrible every day and it is hard to get him to see that my quality of life is really bad. I feel he feels I should be grateful and jumping for joy! I am grateful and if I felt well I would be jumping for joy and living life to the fullest but my quality of life is almost as low as it was while on chemo - some days it even feels worse. He see's me as a success I see me as a person who is permanently damaged and just struggling to get through every day. -- Cancer Support Community
Last Friday I actually hopped into my car at 2:30 in the morning to make it to an ISPOR Value Assessment Frameworks Stakeholder Conference later that morning. There is something to be gained by face-to-face interactions and questions asked at the microphone in a room full of colleagues and other healthcare stakeholders.
Typically working as a collaborative partner or consultant, I am asked to write patient surveys or to provide patient level longitudinal insights from large often inter-operable databases. Shared-decision making has echoed its financial opening bell and stakeholders are queueing up to advance profit margins and in certain cases to actually impact patient outcomes in a positive way.
But here is the problem. Patient centric models or frameworks are what we do WITH patients not TO patients. I am hoping to add another voice to the proper design of survey instruments, longitudianl population analytics, and engagement at the place where patients are in their care journey.
By visiting patients in their home, by helping them come to terms with their illness, I could heal when I could not cure--Abraham Verghese