Patient Centeredness in Policy & Practice:
Live from ECRI_FDA Meeting

Numerous challenges various entities are facing and building patient-centeredness.

Panel #1: Susan Dentzer, Health Affairs, Margaret Hamburg, FDA Commissioner, MD, Carolyn Clancy, MD, Director, AHRQ, Joe V. Selby, MD, MPH, Executive Director, PCORI

Hamburg: onslaught of HIV/AIDS epidemic in NYC brought patients full square at table, extend that model in cancer, but needs to be more broadly disseminated to rest of medicine. those instances worked.

We are here today bec. not working res, policy, etc.

Increase pt. empowerment- have ability to bolster research environment.

Clancy: HIV Practice Network – how effective txs are and get to people who  need them. National Minority – NIH – health literacy tools, education.

Disparities worsening. How to change on the care side in heart failure.

Clancy: Disparities report very informative. Need to customize for different ethnic groups, SES.

Selby: If not careful, can have systemwide intervention that can widen disparities. Race/ethnicity crude.

Hamburg: behind in science and math education. makes it tough for patients to grasp risk.

New Zealand/Australian woman, Harkness Fellow for Commonwealth Fund: commends mtg. first time in US where patients in title of conference. how will you engage with patients?

Patient Advisory Councils/ patient safety –  in healthcare and research. Clancy: how do we find common ground. Pts. see evidence differently.

Hamburg: FDA: Engage pts. on advisory committees, product review. reaching out to critical. Pt. centered drug stuff likely to expand.

Belzer: elevating minority health issues to institute status at NIH. Stop excluding patients from team. still don’t sufficiently. Mission enlarged and deepened by ACA. Bring patients in, not just consumers.

HHS has strategic plan re disparities.

Flexible trial design, out of academic medical center into community.



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