Including the patient voice
"As the health care system evolves and user engagement matures, it creates opportunities to dramatically improve health care delivery. Many promising technologies and practices are being tested and many are yet to be discovered."
– American Hospital Association
Start by articulating to leadership and staff how and why the voices of those who use the health care system will be included in your organization’s project. Be clear about the work that needs to be accomplished, conceptualize the roles of these members of the team, and be prepared to discuss how this engagement aligns with your organization’s mission and the objectives of the task at hand.
Why do this?
Four key reasons:
- Goals form the foundation for any group project. Articulating the purpose of involving members of the public in the work will help get — and keep — everyone on the same page.
- Alignment of your commitment to involving members of the public with the overall mission of your organization or the specific aims of the project frames the rationale in the strongest terms possible.
- If engaging members of the public in your work is something new for your organization, goal-setting helps normalize this practice.
- Spotlighting goals helps your organization keep the longer-term value of community member inclusion top of mind, which can help balance concerns about any short-term costs.
How to get started
A few pointers:
- Be sure the goals are attainable. Is this the first time your organization is involving community members? Set your sights on achievements that are realistic so that both organizational and community participants can feel successful.
- Depending on the tasks at hand, you may need to prioritize and/or sequence the goals. For example, you may want a community member to co-chair the workgroup, but it might make sense to have that as a goal for the second phase of the work rather than the first if your team has limited or no experience with including members of the public in this type of project or work.
- Get feedback from your organization’s leadership and other participants in the project so that there is general buy-in on the goals of this engagement. (See Element 2)
Troubleshooting
You might meet with some resistance to this work in your organization. Here are some common barriers and suggestions for overcoming them.
“This takes time and we just don’t have extra staff time for recruiting and including patients, families or members of the community.”
Anticipate the potential for ‘wasted’ time if members of the community are not included. For example, a task force on improving a pharmacy’s ability to communicate with non-English speakers might decide to develop a list of staff members who speak other languages to act as translators. But if patients aren’t comfortable with that approach, the task force will need to do its work over again.
“We’re concerned about privacy and confidentiality when including people who aren’t part of our organization in our work.”
Other organizations have addressed this problem by asking all members of a work group to sign confidentiality agreements (see sample)
“The last time we tried this, something went wrong.”
Institutional memory can be difficult to overcome. Goal-setting is a very good strategy for combatting this type of resistance. Keep the emphasis on the current project, what needs to be done and how it can’t be done well without the involvement of those who use the health care system.
“People without health care backgrounds won’t understand our work.”
Remind your team that people from other disciplines can provide a wealth of learning for all involved. More and more organizations are reaching across industries to see how they can tackle persistent issues. Teachers, engineers, bankers, artists, lawyers, community organizers, all bring the perspective of their professional paradigm. The rules, regulations, cultures they have experienced will offer a fresh perspective and creative approaches to the problem(s) your committee or task force is trying to address.