Skilled Communications Workshop

June 2, 2018

A NPAF event held in partnership with the University of Illinois Cancer Center

Every year on the first weekend in June, the Patient Brigade of the University of Illinois (UIC) Cancer Center holds it survivorship celebration. The event includes a number of events, including a five K Gospel run/walk and a patient symposium. This year, UIC joined with NPAF to add a special workshop on Skilled Communications in Health Care Decision Making to the weekend. The 50 participants came together to talk about the issues they and their communities face as they seek access to health care and work to improve their communications with their physicians and health care team.

The focus of this meeting was on Your Story, Your Voice. Participants shared their experiences, talking about both the opportunities and challenges of making their voices heard during treatment for serious illnesses. Karriem Watson, PhD, of UIC, Gwen Darien of NPAF and Phyllis Rogers, a patient and advocate introduced the program, stressing the importance of skilled communications in personal advocacy as well as change in vulnerable communities. The group then participated in a storytelling workshop and heard a panel discussion on Skilled Communications. Freddie White-Johnson of the Fannie Lou Hamer Cancer Foundation gave the keynote address and Carla Easter of the National Human Genome Research Institute talked about her agency’s outreach efforts designed to raise awareness of the emerging field of genomics and their impact on human health.

Here are some highlights of those stories.

Tom Workman

described being in the hospital with a tracheotomy and feeling very certain that he didn’t want to go home that way. He was not able to communicate that until one respiratory therapist understood his message and worked with him to determine that he could breathe on his own. “No one was answering my questions,” Workman said, “There was only one person I could communicate with, and as it turned out she got into trouble for what she did--but sometimes you have to break through the protocol.”

Meg Gaines

was diagnosed with advanced ovarian cancer when she was in her mid-thirties. She sought out a clinical trial ultimately saved her life, but she recalls asking her doctor about the potential cure rate for condition, and his response of “We don’t talk about cure rates.” Gaines heard that to mean that it was zero. “We were speaking different languages,” she said.

Phyllis Rogers

now heads Peer Plus Education and Training Advocates and the Patient Brigade. She talked about reaching the five-year mark from her diagnosis of stage III colon cancer and being overcome by anxiety and fear that her checkup would reveal a relapse. She asked for medication and ended up being misdiagnosed as having a heart attack. “No one was listening to me,” she said.

Mary Jackson Scroggins

told a different kind of story. After her diagnosis of ovarian cancer, she was discussing her side effects of treatment with her oncologist and told him that the neuropathy she was experiencing was “altering her gait.” The use of that somewhat technical word changed his attitude towards the conversation. He began to provide a higher level of more detailed information. “Until I used that one word, he was making assumptions about me. That one thing changed the conversation.”

Shonta Chambers

of NPAF, is also a caregiver for her mother who has progressive multiple sclerosis. She talked about the often difficult and underestimated role that caregivers have in developing and carrying out treatment plans, and the importance of caregivers speaking up when with health care providers. “Use your words,” she said, “Don’t be silent.”

Freddie White-Johnson

is an advocate and change agent working in the Mississippi Delta, an area where people sometimes lack running water, electricity and transportation to get to a doctor when they are sick. She connects with her community to improve cancer awareness, screening and access to care. “Research, research, research,” she said. “People come, and they do their research and they leave. They never actually give the community anything tangible. We need to let those people tell us what they need and then deliver those services.”

The workshop concluded with a group of discussions on how to improve communications between patients and their providers. Suggestions ranged from system changes that would allow doctors to have more time with their patients to “paradigm shifts.” The included:

  • “Radical partnerships” between patients and their doctors
  • Changes in medical school and residency training to ensure that doctors have the skills and knowledge to communicate more effectively
  • More effective use of patient stories to help build skills, especially in the Latino community.
  • More requirements that administrators are knowledgeable about the importance of skilled communication and its role in promoting better patient outcomes.
  • Systemic changes, such as those proposed by CMS, to incorporate value-based conversations into health care–and compensate providers for that time.
  • More extensive and effective use of nurses, nurse practitioners and social workers to engage patients in conversations about what is important to them.
  • Advocacy training for both patients and caregivers
  • Stronger patients voices and demands for time and opportunity to engage in value-based conversations with their doctors