Including the patient voice

“It’s fulfilling to represent patients and families, to provide that point of view. I know I’ve made a difference and improved the health care experience for others.” 
– Patient representative

Forge successful partnerships with advisers by recruiting members of the public who are a good match with the needs of your organization or project, and making sure they are welcomed and oriented appropriately.

Why do this?

1. Patients, families and community members are experts at using your services. Or, if you are a policy organization, your work will directly affect the way they experience health care. The closer the match of their expertise or experience to the task at hand, the more value they will deliver to the work.
2. Preparation and orientation will ensure they are ready to be active contributors to the work.
3. Supporting advisers as the work unfolds ensures that both they and your organization get maximum value for the time and effort expended.

How to do this

Identify what you need 

Ideal advisers are individuals who: 

• Are benefitting from their experiences with your organization or will be affected by the policies or other decisions you are making 
• Are willing to talk about their experiences and can effectively share insights and information 
• Demonstrate a passion for improving health care/services/policies for the benefit of others 
• Have the ability to listen well, respect the perspectives of others, interact with many different kinds of people, and work in partnership 
• Have interacted in the past 3-5 years with your organization, since their recommendations will most likely reflect current experience 

Plan to include more than one member of the public in the project so that s/he does not feel like an outsider. Think about the diversity of offerings of your organization and of the people you serve, and recruit advisers who reflect the diversity of experience and of the patient population or with the specific work you are reviewing under the project.

Recruit patients, families and community members

You may find advisers in a number of different ways.

• Consider individuals who have provided constructive feedback in the past (review letters or emails from patients).
• Request suggestions from professionals and staff. If you are part of a hospital or large health care organization, approach social workers, patient relations personnel, ombudsmen or others who interact with patients every day. For example, patient advisers at hospitals often say that a personal invitation from a clinician or other staff member is the deciding factor in encouraging them to become an adviser.

Plan to talk to each potential adviser. Questions you might explore include:

• reasons for wanting to help with your project
• strengths and skills to contribute to the work involved
• experiences in group work situations
• availability

Be fully prepared to explain:

• goals of the work
• time commitment involved
• flexibility about attendance (in person/telephone)
• clear outline of their roles
• any background checks or additional training (such as training on confidential information) that will be required

Prepare advisers and your organization

• Coordinate a meeting or conference call to introduce advisers to the project leader so there is an opportunity for all to ask questions.
• Decide internally about any compensation/reimbursement you can offer. Consider: travel expenses, compensation for lost work time, access to journals, computer and printer use, child care, etc. Be sure to discuss this with advisers early in the process.

Troubleshooting

Here are some common challenges you may face when trying identify, recruit and prepare consumer representatives. 

"One person can’t really represent the voice of all patients but we don’t have room on the panel for too many people."

Having just one representative on your panel or group isn’t ideal, for you or for them. That’s a large responsibility for one person. Try to invite at least two members of the public to serve as advisers. While it may initially seem like extra effort, it allows your group to benefit from more than one perspective, similar to the way in which you might invite a series of ‘experts’ with different backgrounds to contribute to the project.

"Finding meeting times that work for both staff and community members is too difficult."

Many organizations prefer in-person meetings, especially in the early stages of a project so that people get to know one another. This could be particularly important for members of the public since they won’t likely have prior relationships with others at the table. To enable this, you will need to host meetings at times that minimize disruption of the community members’ work schedules (e.g., early morning, late afternoon, or lunchtime). If necessary, consider compensating them for missed hours at work.

"When we seek volunteers for work like this, we hear from the same people all the time."

This is a problem for almost any organization that relies on volunteers.
Some suggestions:

• Develop and distribute recruitment brochures. For example, if your project involves improvement to pediatric services or policies, print materials that parents may see when visiting their child’s pediatrician’s office. Or include the brochures with welcome packets, satisfaction surveys, or other patient-facing materials.
• Use your website or social media. Work with your organization’s communications/marketing department to create a page on the website that contains information on advisory opportunities.
• Ask a local organization that works with the public on community projects, such as a neighborhood association, a hospital’s Patient and Family Advisory Council, or parent board of a day care center.
• One person can’t really represent the voice of all patients but we don’t have room on the panel for too many people.
• Having just one representative on your panel or group isn’t ideal, for you or for them. That’s a large responsibility for one person. Try to invite at least two members of the public to serve as advisers. While it may initially seem like extra effort, it allows your group to benefit from more than one perspective, similar to the way in which you might invite a series of ‘experts’ with different backgrounds to contribute to the project.