Reaching out to the community
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Reaching Out To The Community. To Enhance Accrual Of Special Populations. Elizabeth A. Patterson MD FACR October 2, 2008. Accrual Of Special Populations. Why should we be concerned? NIH Revitalization Act in 1993 requirement

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Reaching out to the community

Reaching Out To The Community

To Enhance Accrual Of Special Populations

Elizabeth A. Patterson MD FACR October 2, 2008


Accrual of special populations

Accrual Of Special Populations

  • Why should we be concerned?

  • NIH Revitalization Act in 1993 requirement

  • Participation in clinical trials is important for elimination of health disparities.


National institutes of health nih revitalization act

National Institutes of Health (NIH) Revitalization Act

  • NIH clinical research must include ample numbers of minorities, as well as women, in order to allow for in-depth analyses of minority populations.

    • If trials do not include minorities, then there’s a question of whether or not the results of the studies are relevant to everyone across the board

    • Whether one can trust and apply the results of a clinical trial, as well as transfer them into clinical practice


Cancer health disparities

Cancer Health Disparities

  • The National Cancer Institute (NCI) definition:

    adverse differences in cancer incidence, cancer prevalence, cancer mortality, cancer survivorship, and burden of cancer or related health conditions that exist among specific population groups in the United States

  • These population groups may be characterized

    by gender, age, ethnicity, education, income,

    social class, disability, geographic location and

    sexual orientation.


Cancer death rates by race and ethnicity us 1999 2003

Cancer Death Rates* by Race and Ethnicity US 1999-2003

*Per 100,000, age-adjusted to the 2000 US standard population.

† Persons of Hispanic origin may be of any race.

Source: Surveillance, Epidemiology, and End Results Program, 1975-2003, Division of Cancer Control and

Population Sciences, National Cancer Institute, 2006.


Hispanic latina females highest incidence rates for cervical cancer

Hispanic/Latina Females: Highest Incidence Rates for Cervical Cancer

Statistics are for 1998-2002, are adjusted to the 2000 U.S. standard million population, and represent the number of new cases of invasive cancer per year per 100,000 females.


Liver cancer

For both males and females, incidence of primary liver cancer for Hispanics is about twice as high as for non-Latinos in the same area.

Rates of primary liver cancer appear to be particularly high among Mexican Americans in Texas, even when compared to Latinos in California or other regions.

Liver Cancer


Reaching out to the community

ACRIN 6673Multicenter Feasibility Study of Percutaneous Radiofrequency Ablation of Hepatocellular Carcinoma in Cirrhotic Patients


Health disparities

Health Disparities

  • African American men have far higher death rates from prostate cancer than any other racial or ethnic group.

  • Both incidence and mortality rates from lung cancer are higher among African American men than in Whites, even though they begin smoking at an older age and smoke fewer cigarettes per day.

  • The Appalachian region has a higher mortality rate for all cancers in the US as a whole.


Reaching out to the community

Colon and Rectum Cancer

Data ACS Surveillance Branch Research 2007


Lung cancer

Lung Cancer


Composition of trial enrollees according to race ethnicity 1996 2002

Composition of Trial EnrolleesAccording to Race/Ethnicity, 1996-2002

Included Breast, Colon-rectal, Lung and Prostate non-surgical cooperative group trials

Murthy VH JAMA. 2004;291:2720-2726 Participation in Cancer Clinical Trials Race-, Sex-, and Age-Based Disparities


Barriers to clinical trial participation

Barriers to Clinical trial Participation

Physician Barriers

General Population

Barriers

Specific Barriers

Diverse Populations

Lack of awareness

Doctors may not

mention clinical trials

as an option

Lack of awareness

Unwillingness to "lose control"

Lack of access

Cultural or ethnic

values / beliefs

Fear, distrust,

or suspicions

of research

Belief that standard therapy is best

Language or literacy

Administrative burden

Personal obstacles

Preconceived ideas

Belief patient would not

Insurance / cost

Lack of access


Aware of clinical trial

Aware of Clinical Trial

Interviews with nearly 6,000 patients with a variety of cancers


Leave stereotypes at the door

Leave Stereotypes at the Door


United states african american population

United States African-American Population

http://www.censusscope.org/us/map_nhblack.html


United states hispanic population

United StatesHispanic Population

http://www.censusscope.org/us/map_hispanicpop.html


United states asian population

United StatesAsian Population

http://www.censusscope.org/us/map_nhasian.html


Outreach to communities

Outreach to communities

  • Racial or ethnic

    • African Americans/Blacks

    • Asian Americans

    • Hispanic/Latinos

    • American Indians

    • Alaska Natives

  • Elderly/disabled

  • Rural

  • Uninsured/limited insurance

  • Poor

  • Limited access to effective healthcare


Enhance clinical trials outreach and education

Enhance Clinical Trials Outreach and Education

  • Efforts at your institution

    • Collaborate with health care providers: primary care, internist, oncologist, surgeons

    • Patient navigators

    • Other professionals involved in patient care

  • Efforts in your community

    • Ongoing education about clinical trials beyond any particular trial

    • Participate in health fairs

    • Outreach activities with community groups

    • Primary care/Community physicians

    • Community-based organizations.


Education and outreach

Education and Outreach

  • Use established referral networks

    • Communication

  • Use support groups to facilitate

    • Enlist Clinical trial participants

    • Patient Advocates

  • Establish and maintain key relationships/partnerships

  • Maintain an ongoing program of community involvement & outreach


Use the media

Promotional materials (TV, Radio, Newspaper, & the Internet)

News stories

Especially in

Local/community papers

Use of culturally sensitive

Use direct mail

(it works)

Boise hospitals contribute to medical advances

Clinical trials involving patients at Boise hospitals will lead to better treatments

BY COLLEEN [email protected]

Edition Date: 08/22/08

A St. Luke's Boise nurse practitioner got her 15 minutes of fame recently when she appeared on national TV to talk about a clinical trial she devised to show women how to reduce the pain of mammograms.

Use the Media


Disseminate the message to enhance clinical trials outreach education and recruitment

Disseminate the MessageTo Enhance Clinical Trials Outreach, Education and Recruitment

  • Be creative

  • Be flexible

  • Create opportunities

  • Think out of the box

Community

Senior Citizen Center

Work

Friends

Club Meeting

Church

School

Neighbors

Family

Community Center


Recruitment tips

Recruitment Tips

  • Know your community

  • Understand the group you need to target

  • Identify barriers to the targeted population

  • Provide cultural and language appropriate informational material


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