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.



LGBT Healthcare: Out of the Closet in New York

Credit: To Treat Me, You Have to Know Who I am, National LGBT Cancer Network, NY

LGBT healthcare took a giant step forwards in New York City last week, with the announcement that New York City’s Health and Hospitals Corporation (HHC), AKA the City’s public hospital system of 11 hospitals, community health centers, and rehabilitation centers, will immediately adopt a program devoted to providing respectful, patient-centered, and culturally competent care to thousands of lesbian, gay, bisexual, and transgender patients. Working with the National LGBT Cancer Network, all of HHC’s 39,000 staff will be required to go through training that would sensitize employees to medical conditions and risk factors, which may be more common based on the gender identity or sexual orientation of the patient.

Liz Margolies, founder of the National LGBT Cancer Network, says that “previous negative experience in the health care system means that many LGBT people avoid coming in for needed health care tests and care. We want to right this wrong right out of the box.” According to Margolies, one in five transgender people are turned away from healthcare facilities. They need similar safe and welcoming care.”

LGBTpeople do not require specialized attention, but risk factor differences include higher rates of alcohol, tobacco, and drugs from an early age. “Medical providers need to be made aware of these risks and be sensitive to the fears of discrimination that prevent LGBT people from even attempting to get care,” said Margolies.

HHC President Alan Aviles, said that each employee would participate in a 15-minute orientation before they work in the system. Department will have more detailed, 1-hour train-the-trainer sessions.

Visitation, Research Needs of LGBT People Recognized

The announcement follows other gains in putting LGBT healthcare needs up front across the United States. In April 2010, President Obama extended hospital visitation and participation in medical decision making to LGBT partners.

Release of an Institute of Medicine Report on the Health of LGBT People at the end of March put the spotlight on the critical need to reach out, incorporate, and study LGBT people in healthcare research. As the report states: “researchers need more data about the demographics of these populations, improved methods for collecting and analyzing data, and an increased participation of sexual and gender minorities in research.”

Margolies said that since the video was released, other hospitals have contacted her, aiming to use it to develop programs, similar to HHC’s.  People expect that the Joint Commission on Accreditation of Health Care Organizations (JCAHO) will soon put standards in place to demonstrate that they are sensitive to the cultural needs of gay, lesbian, bisexual, and transgender people.

“It’s not necessarily outright bigotry, but widespread and pervasive ignorance on the part of medical staff on how to recognize and treat diverse patients,” said Margolies. “If we don’t educate them, who will?”