Daniel E. Epner, M.D.
General Oncology Department
Medical Director, International Center
MD Anderson Cancer Center
September 15, 2010

Outline for Today’s Webinar
 Background: barriers to minority participation in clinical trials (~10 min)
 Focus on the conversation
 Conceptual framework (~10-15 min)
 Patient centered communication
 Motivational interviewing
 Simulation

Barriers to Minority Patient Clinical
Trial Participation
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Ford et al. Cancer 2008;112:228–42.

Barriers to Clinical Trial Accrual
Relating to Awareness
 lack of education
 lack of culturally appropriate information (language barriers)
 Lack of cancer knowledge
 Lack of physician awareness of trials
Ford et al. Cancer 2008;112:228–42.

Barriers to Opportunity to
Participate in Clinical Trials
 older age
 socioeconomic status
 inadequate health insurance
 Co-morbid conditions
 lack of provider referral
 patient/provider communication or provider’s method of presenting information about the trial to patient

Barriers to Acceptance of Enrollment
 Mistrust of research and medical system
 Cost, transportation, time
 Fear

Barriers
CANCER January 15, 2008 / Volume 112 / Number 2

Physician Perspectives on
Barriers to Minority Recruitment
 Barriers perceived by
Physician
 Structural barriers
 Patient related barriers
Hudson et al, Cancer Control November 2005

Barriers to Minority Recruitment
Perceived by Physician
 Lack of awareness or information about trials
 Insufficient resources –too much paperwork
 Lack of proven therapy with reasonable results available
 Protocols are too complex
Hudson et al, Cancer Control November 2005

Structural
Barriers to Minority Recruitment
 Lack of staff to support referring patients
 Paperwork involved with referring patients
 Lack knowledge about available CCTs
Hudson et al, Cancer Control November 2005

Patient Related Barriers to Minority
Recruitment Perceived by Physicians
 patient concern about receiving ineffective treatment: 45% of oncologists
 patient concern about being treated like a “guinea pig”: 59% of oncologists
Hudson et al, Cancer Control November 2005

Mistrust as a Barrier to participation in clinical trials
 Tuskegee experiments
 “guinea pigs”
 Power imbalance
 sensational media reports of bad outcomes
 Fear of randomization to placebo group

“I am not your guinea pig.”
 “I have had a patient tell me more than once I am not your guinea pig. I try to get in enough time with the patient before they shut down and explain that this is not being someone’s guinea pig but that this maybe what we use next as standard of care .”

Lack of health literacy
 “It can be overcome by taking the time to teach the patient and their family/support about the patient's condition and the importance to be in compliance with treatment & research protocol.”

Patient Centered
Communication
 Understand patient’s perspective
 Respond to emotions: patient’s and yours
 Help patient make the best choice on his own behalf.
 Explore concerns, priorities, and goals
 Give patient the information he needs.
 Confidently recommend a plan
Patient Centered Communication in Cancer Care, Epstein and Street, NCI monograph 2007

Understand Patient’s
Perspective
 Ask before telling
 “what is your understanding of your illness?”
 2 minute rule
 80/20 rule
 “Frisbee”
 “what worries you most?”
 “Tell me more.”

Responding to emotions with empathy
 “I know this must be very difficult for you.”
 “I can’t imagine how difficult this must be for you.”
 “You have been very brave through this entire ordeal.”
 “I wish….”
 Allow for space (silence) in the conversation
 Avoid premature reassurance:
 “Everything will be just fine.”
 “Don’t worry, we will take care of everything”

Motivational interviewing
 Help the patient make the best choice
 Focus on patient concerns, needs
 Negotiate rather than persuade
 Speak to patient as equal
 Encourage patient to participate in decision
 Collaborate rather than convince