Making persistent pain management practical and personal
Sunday Brush shares the process behind a new toolkit, designed by and for people with ongoing pain
By Sunday Brush (she/they), who facilitates patient engagement for the Integrated Pain Management (IPM) project at the Center for Accelerating Care Transformation.
The Center for Accelerating Care Transformation (ACT Center) is excited to release the new Toolkit for Managing Persistent Pain. Developed by ACT Center patient partners, the toolkit provides practical tips to help anyone living with persistent pain, no matter what treatment methods they use. The toolkit includes guidance to help people navigate the health system, describe and define their pain experience, and talk with health care providers about treatment options and other issues during and between visits.
Below, Sunday Brush shares the process behind the new toolkit.
Sitting on the sun-soaked deck at Agua Verde Café in Seattle in October, I felt my cheeks ache from smiling. I was finally in person with my team for the Integrated Pain Management (IPM) project for the first time in our 2.5 years of working together – enjoying each other’s company and wearing matching, handmade jewelry from one of our members. We were there to celebrate our many accomplishments, including our authorship of the Toolkit for Managing Persistent Pain, which was designed to give people practical tools for managing pain and guidance on partnering with care teams. The toolkit is now adapted for public use and available online.
The ACT Center is home to our project and fosters our connection with health care teams across Kaiser Permanente Washington medical centers. Our project team includes researchers and four “patient partners” – Kaiser Permanente Washington members who live with ongoing pain – that co-design the project and resources like the toolkit, patient education materials, and tools for health care teams. Together, we aim to implement whole-person care and safe alternatives to opioids for people with ongoing pain.
People with ongoing pain and their health care teams use the Toolkit for Managing Persistent Pain across Kaiser Permanente Washington medical centers. Some people using the toolkit utilize behavioral strategies to manage their day-to-day pain, some are using other medicines or treatments to manage pain symptoms. This toolkit talks about both and is designed to help anyone experiencing persistent pain, no matter how they manage it.
How it’s made: Contributions from lived experience
We created this toolkit in response to the challenges IPM’s patient partners have experienced with managing ongoing pain. These challenges highlighted a need for a comprehensive guide with stories, strategies, clear information, and resources. Patient partners brought distinct skills to the authorship of the toolkit: plain language writing, storytelling, design for usability, and their perspectives from working as health care providers, health coaches, and people living with ongoing pain. Below, I unpack the specific contributions each patient partner made to the toolkit.
Toolkit voice
Writing the toolkit from the patient perspective creates a focus on relevant information for people living with pain. While many other resources use complex medical terms, we made sure that the language and concepts could be easily understood. One patient partner reflected, “We worked together to make sure that each section addresses what we, as patients, feel is most important for us to know and what actions we can take.” We took out confusing information that diverged from the original intent of the toolkit – giving people practical tools for managing pain and guidance on partnering with care teams. For example, we initially included a section on the Non-Violent Communication process for talking to health care providers, but later decided to remove it. Although it’s a solid framework for talking through disagreement or conflict, we found we couldn’t describe it within the context of the toolkit in a way that would be useful to people managing their pain.
Addressing stigma
We know that stigma (a tendency to label, stereotype, or discriminate against people with certain characteristics or group identities) impacts people with ongoing pain. People with identities that are historically marginalized are more likely to experience stigma. For many, stigma is one of the most challenging parts of pain care. It was important for the toolkit to define stigma and reflect on how some people may avoid seeking care because of this. One patient partner shared their experience facing skepticism and discrimination during an appointment. Starting with their story, we identified stigmatizing language and steps people can take to mitigate stigma and focus on healing.
Setting expectations for pain care
For people who are prescribed opioids to manage pain, state and federal guidelines require frequent visits with health care providers and routine urine drug screening as part of a chronic opioid therapy (COT) plan. For providers, these requirements are part of standard care. For patients, unexpected visits and screenings can cause concern and disempowerment. Our team knew that we needed to talk about what to expect from a COT plan so that people don’t feel singled out if asked to come in for additional visits or to complete a urine drug screening. Talking about what to expect helps to prevent concern, disempowerment, and stigma.
Making the most of appointment time
With experience as a nurse and as someone living with ongoing pain, one patient partner brought to light the challenge of limited appointment time and shared strategies that patients can use to make the most of their time with their provider. This is reflected in the toolkit by providing strategies to address specific challenges like limited time, a distracted provider, feeling overwhelmed, and having different ideas about what’s best for your treatment plan.
Designed for impact
The introduction of the toolkit reads, “We are experts on living with ongoing pain, and this toolkit is guided by our personal experiences.” I knew that if our team could directly benefit from the toolkit, others could too. For each step in the patient’s journey – daily self-management, prepping to go to the doctor, talking to your doctor, and navigating the health care system – our team designed supports to empower people living with pain to become active self-managers. I can speak for all of us on the IPM project when I say that we hope that the resources in the Toolkit for Managing Persistent Pain can benefit others as it’s helped us.
Find the toolkit in the ACT Center’s Resource Library. It was authored by ACT Center researchers Kelsey Stefanik-Guizlo, Sunday Brush, Jessica Mogk, Paula Lozano, and Integrated Pain Management patient partners.
Featured resources
Written by patient partners this toolkit offers support and resources for people with persistent pain
A how-to guide for primary care clinics improving pain care and opioid management
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