Including the patient voice

"When [the CEO] first came, he really tagged the phrase, ‘Patients first.’ You’ll hear employees talk about that all the time. That really focused the organization — remember, that’s why we are here. It’s not about the nurses or the physicians, it’s about the patients." – Chief Nursing Officer

Support from internal constituencies for involving members of the public in your work is an essential element for success. Prepare your organization’s leadership, professionals and other staff. Be sure they understand the value of this input and help them see the positive benefits, even if it seems unfamiliar or is viewed as burdensome.

Why do this?

Three key reasons:

1. Leadership support ensures that the work done by your committee, task force, or other group will be valued across the organization and recommendations stemming from the work are more likely to be enacted and enforced.
2. Community members can be more effective if there is support for their perspective. It’s not helpful to the work that needs to be done if they are seen as window dressing.
3. By preparing everyone involved — leadership, staff, and the members of the public you are engaging in your work — people will have a common understanding of expectations. This generally makes group work go more smoothly and maximizes the value of everyone’s time and efforts.

How to get started

Every organization has its own unique environment. You know yours best. Adapt these strategies to your organization’s operational culture.

• Articulate to senior leadership the ways in which engaging patients, families and community members aligns with the organization’s mission and the project’s goals.
• Try to find a ‘champion’ from among senior leaders who can help you communicate more effectively with the organization’s governance.

• Host a mini-workshop for members of your organization who will be working with the community advisers. Provide them with training and/or materials that answer these three questions:
  1. What does community member input look like?
  2. Why is the organization committed to including members of the public on this project?
  3. What is my role?
• Invite questions and respond with clear and timely explanations.
• Designate yourself or another key contact so that concerns can be raised before, rather than during, meetings about the project with community members at the table. Better yet, proactively set up meetings with staff individually and in groups — such as brown bag lunches — to discuss what it means to work with members of the public.
• Ideally, inclusion of community members on any one task will be discussed as part of a deep-rooted, long-term commitment to evolve the system of care within a provider organization, a geographic area, for serving a targeted population, etc.

Troubleshooting

Here are some common challenges faced when trying to gain buy-in and prepare members of an organization to welcome input from patients, families and community members.

"We don’t have the staff capacity to do this work well."

It’s not necessary to make a major investment to effectively engage community members in your work and it needn’t be a full-time job. But time will need to be allocated to recruit, select, and train them to serve as advisers, as well as prepare the organization’s staff to integrate these advisers into their work. Keep the goals of the work top of mind, and set a realistic time frame for the work based on your staff capacity.

"It’s hard to get the attention of senior leaders in my organization to support and staff this work."

Find an executive sponsor if at all possible. Also, many organizations have key staff members at the operational level who help translate the leadership’s vision into programs. Frequently, these individuals are existing professional staff who are well-respected and who have institutional memory and the necessary connections at both the administrative and front-line levels to get things done.

"Our organization is very hierarchical. I don’t think it’s realistic that people will want to hear and include the voices of those who use the health care system."

If you work in a clinical environment, it’s likely that partnering with members of the public is not a familiar role for many on your team. Clinicians, administrators and others may feel that their expertise will not be validated, that community advisers will disclose private information to others outside of the organizations, or that they will make unreasonable or impractical suggestions. Address each of these concerns as part of your work in preparing the organization to accept this valuable input.

"The staff members I’ve talked with so far actually think this is a good idea, but worry about how to do it well."

That’s a great start! See Essential Element 5 for tips on how to welcome and support community input on your project.