ePatientPodcastsResearcher Citizen Participation in Rare Disease Research. It’s Rare. In the United States, a rare disease is defined as a condition that affects fewer…Danny van LeeuwenMarch 3, 2019
AdvocateCaregiverClinicianePatientPodcastsResearcher Unite to share data for best health Data sharing improves health. But it's difficult and unusual. Not sharing leads to error, wasted…Danny van LeeuwenFebruary 10, 2019
AdvocateePatientPodcasts Young Adults Crossing the Threshold from Pediatric to Adult Healthcare How can we be good hosts to young adults as they cross the threshold from…Danny van LeeuwenDecember 30, 2018
AdvocateResearcherWritten Only The Culture of Participatory Research My recurring mind loop these days is non-traditional patient, non-traditional patient, non-traditional patient. I heard…Danny van LeeuwenJuly 8, 2018
AdvocateCaregiverClinicianePatientWritten Only 2+2=what? Alice's blood pressure is 110/50 right now. That's a data point. Her blood pressure, untreated,…Danny van LeeuwenJuly 1, 2018
AdvocateCaregiverePatientLeaderMusicianResearcherWritten Only Failure is Under-Rated I’ve told my teams over the years, if we don’t fail several times a week…DannyApril 29, 2018
CaregiverClinicianConsumerePatientFamily manWritten Only From the Inside Looking Out At the #PCORI2017 Annual Meeting, Alan Alda showed us a simple mirror improv exercise (remember…DannyNovember 5, 2017
AdvocateCaregiverClinicianePatientWritten Only Reauthorize PCORI. We Need It! I care about what works for people on their health journey. How do lay people…DannyOctober 29, 2017
CaregiverClinicianePatientResearcherWritten Only Health Goals to Clinical Decisions (CDS) It's hard to reach personal health goals or solve medical problems without a plan. Plans…DannyOctober 1, 2017
CaregiverePatientResearcherWritten Only Learning What Works One of my passions in life is Learning What Works for people on their health…DannySeptember 10, 2017