What does personalized pain care look like?

‍Key takeaways:

• All pain is real and every patient deserves to hear the words, “I believe you.”
• Patients need space to tell their pain story in a supportive, empathic environment.
• Provide tools that empower people to change their pain story, such as the Aivo app.

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There is always a shadow that lingers around pain management. 

The “shadow” is your past experience with a healthcare system that doesn’t believe your pain is real. This may affect how you see new treatment options, to the point that you may be in autopilot mode when looking at new pain treatments.

There are multiple parts of this problem:

Patients feel they have to continually prove that their pain is real and should be taken seriously. Pain is assessed by standard questionnaires, rather than space created for their personal pain stories to be heard.

Patients encounter many providers who don’t understand pain deeply. These providers are well-meaning but have rigid beliefs about “what is wrong” that reflects their own personal biases, rather than the unique needs of the person in front of them. So the patient is prescribed treatment based on a provider’s bias, NOT what is objectively best for them.

Even if a patient is fortunate enough to meet a well-intentioned provider who listens to them and practices evidence-based care, an insurance company (or worker’s compensation) determines whether they actually receive that care based on opaque, impersonal algorithms. The provider’s opinion is always prioritized over the patient’s self-report. The well-being of the patient is rarely driving these decisions.

The result? In the words of chronic pain patient advocate Joletta Belton, “We all feel so alone in our pain.”

Keys to Meaningful Personalization

The most important keys to meaningful personalization are emotional.

1. Prioritize the patient’s narrative and language. 

When a patient first arrives, make space to listen to them. Give them time to share their personal story in a way that isn’t pigeonholed into a standardized interview or a questionnaire read from the screen of a computer. Use the patient’s language. If they have specific phrases for pain or personal metaphors, that language is far more effective to mirror back than imposing a provider’s own metaphors. If a patient doesn’t want to lead the conversation, then make sure they know that’s okay, too. 

2. Explicitly say “I believe you.” 

Validate that all pain is real, regardless of whether it is accompanied by a positive test result or scan. The evidence that pain exists is the person who says, “I hurt.” Many patients have never heard the simple words, “I believe you.” They deserve to hear this simple affirmation every time they seek treatment. 

3. Create opportunities for shared decision making.

Develop mutual trust. A patient and a provider are allies who both seek to solve the same problem: pain. For some people, shared decision-making allows for them to consent to and take part in their care. For others who want to be led because they are all out of ideas, we can make space for that too.

4. Create an empathic safety net with personal coaching.

A personal health coach walks with a patient on their journey, each day. A coach gets to provide motivational support on the not-so-good days and the great days, tailored to each individual’s needs. Living with chronic pain can feel so isolating for patients, making it even harder to take the next steps forward in pain care. Health coaching can bring evidence-based recommendations to life and help patients to take manageable steps towards relief. 

5. Provide dynamic, situation-specific support.

Chronic pain is a roller coaster ride. The kind of support a patient needs during a pain flare dramatically differs from the support they need when their pain is stable or low. During a pain flare, patients benefit from focused coping skills that reduce the fight-or-flight response and relieve anxiety and fear. During a stable pain period, a patient has a greater attention span to take in new information that gives them deeper insight into how thoughts, feelings, and actions interact with pain.

Changing Your Pain Story

Aivo has taken these pillars of personalization to heart. To empower an individual to change their pain story, Aivo is rewriting the narrative around chronic pain management. The Aivo app was designed by real people who have overcome chronic pain to neutralize the shadow of past experiences with unsupportive pain care. 

The brains behind Aivo created the app with one goal in mind: to give every person with pain the psychological tools they need to achieve real, lasting relief. In the US, there are fewer than 30 multidisciplinary pain management programs that offer evidence-based psychological pain care. Few people have access to this high quality of care, and our mission is to change this so every person with chronic pain gets the excellent care they deserve.