So many decisions to make in the journey toward best health. Should I take this medicine, should I have that surgery, should I stay home from work, should I worry, should I use a cane, should I tell my employer or my spouse, should I eat this, should I buy that insurance, should I see both doctors on the same day, and on and on and on. Clinicians and e-patients approach decisions so differently. For clinicians its studies published in academic journals that show an increased likelihood that x works better than y for a specfiic population. It’s habit and common community practice. For e-patients it’s often spur of the moment decisions, trusting someone. It’s about me.
Yesterday, I attended the Board meeting of PCORI (Patient-Centered Outcomes Research Institute). I wrote about PCORI in a previous post. PCORI could transform some research about health. See the notes of the meeting here. A group of e-Patients made three recommendations to the PCORI Board in the public comment period:
The PCORI Board addressed the challenges of being patient-centered several times in their deliberations. They asked, what is a patient? Is it someone who is sick or caring for someone sick? What about the well – the worried well, or those preventing sickness? Should patient engagement in research mean that patients should speak to each other in patient advisory groups or should they foster melding of the silos of patients, researchers , advocates, vendors, and providers? How should they foster and hear advice from patients? What projects should they prioritize that are most likely to impact patient engagement and experience?
So many decisions to make in the journey to best health.