Partnering with Patients to Improve Healthcare

Last week I had the pleasure of attending the Institute of Medicine’s (IOM) Partnering with Patients workshop, where PatientsLikeMe’s Health Data Integrity & Patient Safety Director Sally Okun, RN, MMHS, and PatientsLikeMe member Laura Phillips, who has multiple sclerosis (MS), shared the stage as co-presenters. It was a novel approach to incorporate a patient co-presenter into our presentation, and Sally reported that it made the experience quite special for her. The day-and-a-half-long meeting brought together clinicians, researchers, policy makers, advocates, patients and caregivers—people who all care about creating better value and improving the quality of healthcare in the US. In the opening remarks by IOM Chairman Michael McGinnis, whose arm was in a sling, we were reminded that everyone is a patient at some point, but most don’t always have that mindset. The meeting covered many topics, including the problems with healthcare that are complicated and hard to change. Coming from the PatientsLikeMe community team, the topic that struck me most was empowering patients to meaningfully participate in the decisions that affect them, such as which treatment to take or which doctor to see. There are many barriers to finding the answers, and we have a long way to go in …

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