How to Prepare for Self-Advocacy After a Cancer Diagnosis

Patients should consider creating personal overviews to help care teams see them as individuals, explained Michelle Kirschner.

In an interview with CURE, Kirschner noted that while advocacy is important, not everyone feels comfortable speaking up for themselves. In those cases, it can help to bring someone who can provide support during appointments.

She recommended preparing a personal overview — a short summary of what matters most to the patient — to help the care team understand the patient beyond their diagnosis. Adding this to the medical chart allows providers to connect with the patient as a person, not just as someone receiving treatment.

Kirschner is the director of Program Development at the Cancer Survivorship Provider Network, located in Cincinnati, Ohio, where she focuses on supportive care and long-term patient empowerment.

Transcript:

How can patients advocate for themselves to get the best care during treatment and beyond?

I think this idea of advocacy is really important, but not everyone is a born advocate. If you are, then knowing what to advocate for is key. But if you don’t feel like you can be your own advocate, it’s important to find someone who can come alongside you.

When you go to visits, come prepared with a few things. First, you want your care team to know who you are as a person. One thing I used to do with my patients was help them create a personal overview — a summary of who they are and what’s important to them. For example, you might write, “I value being an athlete. I value friendships. I love nature.” It should be something that truly expresses who you are, and you can have that added to your chart. That way, when your doctors and care team read your chart, they see a human being, not just a patient.

It’s always important to help your care team understand you as more than just the patient. You also need to be clear about your needs before your visits. That means writing things down and not assuming your care team will ask about everything that matters to you. A good example is sexual health. We know that very few providers bring it up, but it’s an important topic for many patients. Right now, your care team will probably help if you tell them what you need, but you might have to start those conversations yourself.

Transcript has been edited for clarity and conciseness.

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