Including the patient voice

"We are listened to, and many of the things we suggest are put into practice." 
– Patient representative

It is not realistic to expect that every adviser on a working project will come to it with the same level of knowledge or understanding of the task(s), challenges, and array of possible outcomes. This is especially true when including members of the public in work related to health care quality, delivery, or policy. You may need to prepare your advisers in advance — and support them throughout — to be sure their contributions to the project and their experience are meaningful and positive.

Why do this?

Much of the answer is intuitive, but it bears mention:

1. Good preparation and support will enable community member advisers to feel more comfortable participating in what might be a new experience for them.
2. Satisfaction with contribution and participation leads to a stronger commitment to the eventual outcome of the project and its dissemination and acceptance by other patients, families or other constituents.
3. Organizations get more out of community members’ perspective when the advisers feel genuinely valued. Investing even a small amount of time in training and orientation underscores their sense that they are making a needed contribution to the work ahead.

How to do this

• Start with this premise: We are committed to making sure you have the training you need to feel confident in your role as an adviser.
• Designate a member of your staff as a liaison to advisers. He or she will be the main point of contact, can offer additional support as needed and can gather ongoing feedback.
• Prepare and organize background materials into a manual, binder, or accessible online folder. The comfort level of participants increases if they know what to expect and what’s expected of them. Be sure the tone is warm and welcoming. Include:
  • Meeting schedule and project milestones, including length and frequency of meetings, where they are hosted, if virtual attendance is encouraged or accommodated, and expectations for other time commitments such as periodic check-ins by phone, or review of documents.
  • Explanation of other tasks, such as being asked to review materials to prepare for a meeting. How will these be made available? Who can they get in touch with for questions? How much time to review? Preferences for sending: mail or email?
  • Name and contact information for the point person on the project.
  • Role of each participant on the panel or workgroup. 
  • Background information on the topic, written without extensive jargon, acronyms, etc. Consider using newspaper clippings or other general media narratives on the topic, if relevant, as these are often more accessible than medical literature.
• Host one or more orientation sessions. This may be done one-on-one, or with a group. The goals of the session is to be sure the community advisers:
  • Understand their responsibilities as equal partners on the project team
  • Feel comfortable in their role.
  • Have appropriate expectations for their participation. Have a good understanding of the practical aspects of being an engaged adviser.
  • Have information about why and how the organization believes that including the voices of those who use the health care system will help improve the quality, safety or policies at the organization.
  • Understand how things work at the organization. Include a tour of the facility if possible.
  • Know how they can best contribute to the outcome of the project.
  • Know that they can ask questions if they are not sure of something.
  • Know that they, indeed, bring a lot to the table/conversation and are necessary to build the necessary bridge between the public and the health care professionals or policymakers.
  • If applicable, explain any HIPAA or other privacy training they will receive prior to joining the task force or committee.
• Advisers may also benefit from having a one-on-one meeting with the project/committee chair prior to attending the first meeting. This provides an opportunity for introductions and for advisers to ask questions about the project. The staff liaison may wish to attend this meeting, as well.
• Advisers will also need specific orientation directed to the project work, particularly with regard to some of the technical aspects. Potential topics to address will depend on your specific project and goals, but may include:
  • Quality improvement models and methodologies used at the organization
  • Types of data collected
  • A review of the importance of confidentiality and privacy
  • Choose a meeting time and location that will work for advisers. Ask if they need any accommodations to attend meetings in person or virtually.

Troubleshooting

"Our project is very technical/clinical. It will be hard to include people in the work group who don’t have a health care background."

This may seem daunting, but it’s helpful to know that this has and can be done. It takes some careful thought to avoid information overload. One rule of thumb: don’t try to communicate everything at once.

• Break the information down into manageable pieces or elements.
• Consider background articles on the topic that were written for more general audiences whenever possible and appropriate; peer-review journal articles will be more approachable for non-experts once a foundation has been laid.
• Find visual and other ways to make complex issues understandable. Consider developing logic models, cause-and-effect diagrams, or other schematic diagrams. You’ll find these may help everyone at the table.
• Be aware of the make up of your adviser group and adjust your training and orientation to each, as much as possible, in the group or individually. You might want to ask each adviser what subjects they feel they need preparation in.
• Leave a substantial amount of time for questions.

"The last time we tried this, one of the advisers struggled with his duties on the project. It was an awkward experience for all of us and we do not want to have a repeat of this."

Occasionally, despite careful recruitment, selection and orientation, an adviser struggles with his or her duties. If this is the case, find out why.

• Perhaps the project is a not a good match with the adviser’s skills and interests, after all.
• Perhaps the adviser needs additional training or would benefit from working closely with a mentor.
• Perhaps the project team has difficulty coalescing to create a supportive environment and there is resistance from health care professionals, staff, or other advisers. In this case, it may be helpful to work with clinicians and staff to help them develop more effective partnership skills, depending on the timing of the project.

"How can we make advisers feel comfortable with the group process?"

• Try to ensure that there are at least two, if not three, members of the public on the project.
• Encourage advisers to identify potential allies in the group. There may be people in the group who come from a more patient-centered approach than others, or who have agreed with a community member on other points. Helping advisers to identify these people and to approach them at break times can help them to feel more supported when they raise topics in the main meetings.
• Encourage staff to participate in the orientation of advisers. This helps them feel welcome and facilitates their understanding of the purpose of and goals for the project.
• Ask the committee or workgroup chair to recruit experienced advisers (if you have them) to mentor a new adviser. Mentors can contact the adviser after each meeting to answer questions and make sure the adviser remains confident with his or her participation. This commitment does not need to be longstanding. It is likely only needed for the first three to four meetings. The staff liaison can check in with each adviser at the end of the first 3 or 4 months to determine if he or she needs the mentorship to continue.