My name is Catalina - I’m a current co-chair of the ICN Patient Advisory Council, a social/clinical research assistant at the University of North Carolina and will be starting medical school soon. I recently gave a presentation at the Anderson Center for Health Systems Excellence about emotional labor, empathy and how to navigate these concepts when working with patient advocates. I wanted to share some of my talking points with you here.

Emotional labor is commonly used to describe the work of marginalized groups to subdue their emotions while advocating for their rights. The term has been around since the early 1980’s – first being used by sociologist Arlie Hochschild – but has really been trending in the mainstream since 2017 when it was featured in a Harper’s Bazaar article.

Empathy is more or less the ability to consider what someone else is going through – to walk a mile in their shoes.

To equitably and effectively work with patient advocates, who are often volunteering to share their time, talents and expertise within a Learning Health Network I would like to recommend the following considerations:

 

💚 Seek advocacy opportunities and outcomes that link positive experiences with illness

💙 Give patient advocates agency and choice where possible

💚 Involve patients throughout network hierarchy and during strategy development

💙 Develop training to educate patients on key terminology

💚 Consider the emotional stake patients have in advocating

💙 If patients may be emotionally impacted by what you have to say, schedule a call instead of sending an email

💚 Treat relationships with parent and patients as partnerships. Remind patient and parent partners that your role is to advocate and work with them, rather than to manage them

💙 Co-develop expectations for patient and staff partner interactions during co-production activities

💚 Use language that gives an “out,” such as: “I know you’re busy right now, so please feel free to say no if this is too much"

💙 Schedule calls at times that work for patient advocates’ schedules

💚 Minimize routine/administrative work patient advocates must take on

💙 Put yourself in their shoes. How would you like to be worked with and treated?

💚 Think about your modes of communication and their impact on patient advocate experience

💙 Involve advocates ubiquitously and often, but think about making involvement as accessible as possible

Do you have questions about Empathy, Emotional Labor and Patient Advocacy? Please contact me through the PAC at pac@improvecarenow.org

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