Minority Clinical Trial Participant Webinar:Difficult Conversations

Daniel E. Epner, M.D.General Oncology DepartmentMedical Director, International CenterMD Anderson Cancer CenterSeptember 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

AwarenessOpportunityAcceptance

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 onBarriers 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