Including the patient voice

“We see patients and families as essential partners in our work because they bring a perspective that only they can provide. You can’t improve the health care system without including the voices of those who are affected by it the most.” – Executive at a health  care agency

Spend time building a foundation for successful interactions and meetings. You, your organization, and the community members will all feel rewarded.

Why do this?

1. Well-facilitated meetings lead to participants who will feel empowered about their own ideas and participation, stay invested in your organization, and take on responsibility and ownership of the project.
2. Facilitation skills are the “process” skills you can use to guide and direct your project’s/panel’s work effectively and purposefully. Facilitation focuses on how people participate in the process of learning or planning, not just on what gets achieved.
3. When community members join a project, the first interactions and experiences are critical. With extra effort and planning for the early meetings, you can help advisers to feel welcome and promote positive experiences that can be sustained throughout the process.

How to do this

1. Set a positive tone at your first meeting.
   • Include time on the agenda for introductions, and possibly an ice-breaker activity to help establish a good working relationship.
   • Distribute short biographies for everyone on the committee or work group and use name tent cards to help with name recognition.
   • Review the goals and tasks of the group to ensure everyone is on the same page
   • Agree upon a set of group norms

2. Foster healthy group dynamics
   • Be mindful of how communication style and language can either create an inclusive or exclusive environment. The meeting facilitator or chair is responsible for ensuring a safe, inclusive atmosphere in the group.
   • Strongly discourage the use of professional/medical jargon in the meetings, which can make members of the public feel excluded)
   • Consider eliminating the use of titles in order to deemphasize status differences
   • Seat advisers in the middle of the meeting participants so they do not feel isolated from the group. The facilitator/meeting chair should be conscious of bringing them into the conversations.
   • Consciously work to overcome the power difference between health care professionals or other “experts” and patients. Remember that it can be intimidating for community members to posit alternative viewpoints in groups of professionals and staffers. Try these strategies:
   • Emphasize the importance of the public perspective and the expertise the advisers bring.
   • Reinforce to the full group that the patients, families and community members have equal status and their contributions are essential to the outcome off the project.
   • Give examples of successful community engagement in similar projects.
3. Keep meetings on track
   • Start and end on time. Remember, there are volunteers at the table.
   • Consistently encourage and model talking openly. Staff and advisers should be prepared ahead of time for honesty in these conversations.
   • Leave time for questions.
   • Identify a feedback loop at the end of the meeting so that members can contact project leads or presenters between meetings, if needed.
   • Develop and share plans for follow-up.
   • When committees are formed, ask – don’t assume – which tasks, if any, the advisers will have time and interest in undertaking.
4. Don’t lose momentum between meetings
   • Provide more detailed materials that committee and workgroup members can review as needed. Be sure advisers have adequate time to review and ask questions about the materials before the next meeting.
   • Be mindful that you don’t exclude the advisers from emails that should include all who are working on the project or subcommittee.
   • Especially early on, have the staff liaison check in with advisers to see if they need additional support or have feedback to share with your organization.

Troubleshooting

"How do we make sure that members of the public are fully integrated into, and satisfied with their participation in the project?"

Plan ahead (see Element 3 and Element 4). Ask for and integrate feedback. The resources from Consumers United in the sidebar may be particularly helpful to you.

"Some members of our work group/task force are more receptive to hearing from members of the public than others."

There are approaches you can take. Here are two:

1. Find ways to remind everyone of the purpose of having patients, families and community members helping with the work. Use examples of successes, either in your own organization or others.
2. Encourage advisers to identify potential allies in the group. There may be some in the room who come from a more patient-centered approach than others, or who have agreed with members of the public on other points. Helping advisers to identify these people and to approach them at break times can help them feel more supported when they raise topics in the main meetings.

"We aren’t sure how to manage differing opinions, perceptions and, occasionally, tensions."

Acknowledge that there will be differences up front. If extreme differences in opinions or perceptions develop, the staff liaison should encourage the workgroup/project chair to consider facilitation methods to navigate and bridge these differences. Some examples:

• Ask for assistance from an organization staff member who is not part of the workgroup and who is recognized as a skilled facilitator
• Delay a decision and gather additional information as needed; develop a timeline for final decision making.
• Appoint a task force or subcommittee for further study of the issue at the heart of the dispute.