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Strategies for Cancer Clinical Trials Education and Awareness: Lessons from the Field


Title: PowerPoint Presentation Author: Christopher Spielmann Last modified by: snyderlynn Created Date: 11/3/2005 2:40:44 PM Document presentation format – PowerPoint PPT presentation

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Title: Strategies for Cancer Clinical Trials Education and Awareness: Lessons from the Field

Strategies for Cancer Clinical Trials Education
and Awareness Lessons from the Field
Why should we care?
  • Cancer affects all of us
  • Each year in the U.S.A
  • More than half a million people die of cancer
    more than 1,500 people a day
  • People of color are disproportionately affected
    by cancer

Cancer Disparities Defined
  • NCI defines "cancer health disparities" as
  • . . . adverse differences in
  • cancer incidence (new cases),
  • cancer prevalence (all existing cases),
  • cancer death (mortality),
  • cancer survivorship,
  • and burden of cancer or related health conditions
    that exist among specific population groups in
    the United States.

Who participates in cancer clinical trials?
  • Less than 5 of all eligible people with cancer
  • Few over age 65
  • Ethnically diverse populations
  • Even fewer in many large prevention trials

Inclusion of women and minorities
  • 1986 inclusion of women encouraged
  • 1987 inclusion of minorities encouraged
  • 1993 NIH Revitalization Act
  • 1994 NIH revised inclusion policy to mandate that
    women minorities MUST be included in all
    clinical research studies

Widespread access to clinical trials and racial
and ethnic proportionality is less a matter of
scientific necessity than of social justice -
Brawley, 2004.
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Barriers To Clinical Trial Participation
General Barriers to Participation in Clinical
  • Many do not know what a CT is
  • Fear of research historical abuses
  • Fear treatment will be withheld
  • Lack of access to CTs
  • Personal and practical obstacles (language)
  • Cost and insurance concerns (out of pocket costs)
  • Cultural influences
  • Unwilling to go against doctor
  • Study design eligibility criteria (i.e.
  • Low health literacy

Healthcare Provider Barriers
  • Unaware of clinical trials
  • Unwillingness to lose control of patients care
  • Belief that standard therapy is the best
  • Administrative burden
  • Not enough time to discuss option with patients
  • Judge that patient would not be interested

Role of Physician in Clinical Trials Participation
Source A Quantitative Survey of Public Attitudes
Toward Cancer Clinical Trials R.L. Comis, C.R.
Aldige, E.L. Stovall, L.U. Krebs, P.J. Risher,
H.J. Taylor (2000)
How Do People Find Out About Clinical Trials?
  • Their physicians
  • Inform them clinical trials are an option they
    might look into
  • Refer them to specific clinical trials
  • Conduct trials as part of their own practices
  • They hear about them from trusted sources
    family, friends, community leaders, etc.
  • They search out options on their own.

Barriers for Ethnically Diverse Populations
  • Fear and skepticism due to past abuses
  • Lack of invitation/awareness
  • Cultural barriers
  • Language/Literacy

A Tale Of Two Approaches
  • Promoting clinical trials broadly among
    populations that have cancer disparities.
  • Promoting specific clinical trials that address
    high priority cancer needs expressed by
    populations/communities with cancer disparities.
  • What are the pros and cons of each of these?

Minnesota Cancer Clinical Trials Education and
Awareness Network (MCCTEAN) 2002 - 2005
  • A statewide network with a goal of creating
    awareness about cancer clinical trials and
    providing educational opportunities for health
    professionals, the public and individuals/families
    with a cancer diagnosis.

Recruitment of patients to trials
Recruitment of healthy subjects to studies
Allied health workers
Community leaders
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4 Leaders 2 Approaches
  • Focus on health professional education
  • Training on NCIs CTES materials
  • Assessment
  • Integration of the topic at cancer/health
  • Community clinic trainings (FQHC)
  • Focus on community education
  • Tour of research labs, cancer centers, etc.
  • Integration of clinical trials at community
    events and health fairs
  • 11 navigation education classes DVD
  • Ongoing activities at home institution and with
    regional partners

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  • Over 20 resources
  • Brochures, Workbooks, Web site, Slide shows,
    Videos, DVD, CD, and Booklets
  • Created as a train-the-trainer program
  • Targeted education and outreach to health
    professionals and the community

Importance of Community Outreach
  • Informing your community about clinical trials
  • Overcome barriers to enrollment in trials
  • Help people make informed decisions about cancer
    treatment and prevention options
  • Make community aware of the option of
    participation in a clinical trial

Considerations for Community Outreach
  • Be familiar with communities you are serving
  • Decision making
  • Gate Keepers/Leaders
  • Informed Decision making is the message not
  • Address potential risks of trials, in addition
    to benefits
  • Involve those who help with decision making
  • Provide ample opportunities for questions
  • If you sense hesitation, address it head on use
    this as an opportunity to for dialogue
  • Stress patient rights to withdrawal at any
  • Avoid conducting outreach that will disrupt work
    and home schedules.
  • Stress importance of equal access to highest
    quality care
  • Incorporate clinical trials information in all
    cancer-related programs
  • Highlight the advances made clinically

Considerations for Community Outreach
  • Present clinical trials information in a way
  • complements the audiences values
  • is respectful and easy to understand
  • uses multiple approaches publications, videos
  • Testimonials, stories
  • Small group discussions
  • addresses fears and concerns
  • Organize tours for community leaders and doctors
  • Develop a mechanism for visits by patients
  • Present clinical trials information in an
    unbiased way

Barriers for Specific Populations
Asian Americans
  • Different Values
  • Decisions by consensus
  • Group welfare
  • Family centrality
  • Saving face
  • Degree of acculturation
  • Language barriers

Native Americans
  • Past discrimination
  • Tribal taboo -loss of body parts
  • Different communication styles
  • Traditional gender roles
  • Language barriers
  • Other co-morbidities

  • Fatalism
  • Use of folk remedies
  • Delays seeking health care
  • Fear
  • History of past abuses
  • Family/Work responsibilities
  • Poor MD/pt communication
  • Language barriers (regional dialects)

African Americans
  • Lack of awareness
  • History of past experiences
  • Experiences with medical systems
  • Fear
  • Hopelessness, fatalism
  • Lower priority
  • Family and/or work responsibilities
  • Researchers not giving back to community

Whats Wrong?
  • A cancer center has been working to build a
    relationship with the local Indian tribal
    community. At a recent meeting with Tribal
    council leadership, a nurse talks about a new
    clinical trial and hands out information
    detailing how patients are randomized to arms of
    the trial. She says, If any of your members are
    diagnosed with lung cancer, feel free to pass
    this out

Whats Wrong?
  • A medical center puts an ad in the paper for a
    breast cancer prevention trial. The team makes
    sure to include Se habla espanol in the ad.
    When staff get a call from a Spanish speaker, no
    one can find the Spanish speaking nurse to help
    the caller.

Other MCCTEAN Activities
Cancer Clinical Trials Conference
  • To inspire communities of color, policy makers
    and providers to establish and strengthen
    partnerships and collaborative relationships to
    reduce cancer health disparities while
    understanding the barriers that prevent the
    benefits of research from reaching all
    populations in Minnesota.

Cancer Plan Minnesota 2005-2010
  • Promote participation in prostate cancer
    screening and prevention trials.
  • Provide all cancer patients with information
    about clinical trials.
  • Conduct outreach programs in racial and ethnic
    minority communities that communicate the results
    of clinical trials, as well as the benefits of
    clinical trials to individuals and to
  • Expand the clinical trial infrastructure into
    racial and ethnic minority communities, including
    employment of culturally diverse staff.
  • Use community lay health educators to increase
    awareness of clinical trials in community
  • Solicit participation from racial and ethnic
    minority communities on Institutional Review
    Boards (IRB).

Strategies - Institutional
  • Have community members be part of the IRB
  • Clinical Research Advisory with community members
  • Tours of facilities for community gatekeepers
  • Three R (Recruitment, Retention, Reporting
  • Recruitment should not be the sole focus
  • Studies should take into account or include
  • Retention plan learn about the experience, why
    they stay and why they withdrawal
  • Report back send period letters to
    participants, referring physicians and final
    report to community gatekeepers and community
  • Reduce literacy levels of informed consents
  • System to identify and match newly diagnosed
    patients with available clinical trials
  • Clinical Trials navigator/coordinator

Final Lessons Learned
  • For sustainability have and dedicate a staff
    person to the project
  • Keep in mind everyone is busy
  • Measure knowledge/awareness, not recruitment
  • Cast a wide net of partners
  • Talk ahead of time with key contacts to determine
    appropriate content and speakers

  • Clinical Trials Education for Native Americans
  • Education Network to Advance Cancer Clinical
    Trials (ENACCT) http//
  • Eliminating Disparities in Clinical Trials
    (EDICT) http//
  • NCIs Clinical Trials Homepage