“They listened to me,” expressed a young, African American woman, whom I’ll call “T”, after two and half days at a deliberative session in Chicago, IL. By the end of the session, she told us how much she loved the experience and even said that this experience might change her career choice. But, her experience was not smooth, and her story speaks to the challenges of engagement – whether it occurs seeking input into a policy decision or at the doctor’s office.
As one of the youngest participants in the room, T did not feel comfortable speaking on the first day of deliberation. She listened to the information presented by the facilitators. She listened to “expert witnesses” present about evidence-based medicine and the concerns facing the health care system today. She listened to other people in the group. But, she did not share her opinions.
On the second day, T expressed frustration, but not to the facilitators or others in the room. She left the larger group and voiced her concerns with the project’s support staff sitting in the hallway– those critical staff members who handled all the logistics of the event, such as checking people in, making sure the food was there on time, and distributing incentives. T told the support staff that her opinions were different than the rest of the group, but she was too shy to share her thoughts with other participants. She was especially concerned about offending people who were older than she was, and she assumed these other participants would not understand her perspective. Further, T questioned the purpose of the deliberative group and assumed the research team already knew the answer they wanted from participants on the health policy issue. Therefore, T felt uninspired to share her divergent views.
The support staff encouraged T to share her opinions and reiterated the value in her unique perspective. They let her know that the project team wanted to hear all perspectives and hear reactions to those different opinions. They got her permission to share her concerns with the facilitator. Later that day, the facilitator pulled T aside, listened to T’s concerns, and helped T articulate what she wanted to share with the larger group.
On the third day, T found the courage to speak up and share her opinions. People in the group appreciated what she said, and T became animated and excited about the group’s discussion. She told the project team that she had not thought about health care in this way before and had learned so much from other people’s thoughts and perspectives. She could not believe that people in the group valued her perspective. “They listened to me.”
T’s story highlights how challenging engagement can be.
- It takes time and effort by all parties to create a safe environment and build trust. Although some people jump right in and start debating, T did not. Both the project team and T expended time and effort for engagement to occur. The project team worked with T to help her feel safe and confident enough to share her perspectives. T worked to articulate what she was thinking and had to get over her discomfort with speaking in a large group.
- Information comes in different formats. Participants in the deliberative groups received information ahead of the session. They also heard from experts on the issues. But, perhaps more powerful, they heard from each other – personal stories, what others thought about the issues, the questions people posed to the experts. T never articulated exactly what information inspired her to leave the group and express her opinions to the support staff. Her example highlights how difficult it can be to determine what information touches someone and helps them clarify their opinion. What is clearer is that no one way will work for everyone.
- Deliberation brings up tensions in health care issues that make people uncomfortable. When debating about value-laden social issues, conflicting opinions and values get raised. And, these conflicts not only occur with others in the group, but also occur within one’s own thoughts. Often, we do not have the opportunity to closely examine these personal and emotional issues. Doing so can be rewarding, but also a bit painful.
- It is important to address the power dynamics in the room. T did not feel comfortable initially going to the facilitator, whom she perceived as older and an expert on the issues. Instead, she went to the project’s support staff – people she felt were more like her. The support staff helped to bridge the power dynamic and helped T and the facilitator work together on more equal footing.
- People need to feel like their input is valued. Initially, T hesitated to speak up as she thought her lone perspective would not change the outcome of the discussion. As the project team emphasized the value in T’s opinion to the policy issue and to others in the group, she became more inspired to share it.
Even with these challenges, T’s story highlights the importance of creating an opportunity to engage the public on health policy issues. Not only were we able to get her valuable input on an important policy decision, but T felt more confident in her abilities and excited about the future.