Background & Aims

In Canada, comprehensive chronic pain care employing biopsychosocial approaches remains scarce and is difficult to access. Previous research revealed an underlying sense of abandonment among patients living with chronic pain in Alberta; many patients rely solely on self-management, personal coping strategies, and self-advocacy skills to “fight to get what [they] need”(1). Pain education and self-management programs, many of which are delivered online, offer patients valuable knowledge and skills to enhance their self-management, consequently improving patient outcomes. Despite the growing number of such programs, their actual uptake and completion rates remain low. A misalignment between the programs and the patients’ needs could be one reason for the low uptake and completion. This work is part of a larger research study, which hopes to inform the development of pain education and self-management resources within the new provincial Virtual Chronic Pain Program in Alberta, Canada.

Methods

This work represents the SET phase of a study, adhering to the Patient and Community Engagement Research (PaCER) methodology to conduct research by, for, and with patients in their communities(2,3). The PaCER methodology is qualitative and iterative in nature, encompassing three phases: SET, COLLECT, and REFLECT. The SET phase may include a series of meetings and/or focus groups, during which detailed notes are taken. The SET phase notes are narratively analyzed to define the research question, compose guides for the COLLECT phase, and develop a participant recruitment strategy. A distinctive feature of the PaCER methodology is that all phases are led by PaCER-certified researchers. PaCER researchers are individuals, with their personal experiences as patients and/or caregivers, who undergo an intensive 12-month certification program, which equips them with the skills necessary for conducting patient-to-patient research(2-4).

Results

For the SET phase, our team of PaCER researchers with lived experience of chronic pain (N=4) engaged patient research partners (N=3) who are individuals living with chronic pain and active advocates within the provincial healthcare delivery system.4 The SET phase included two 1.5-hour group meetings. As a result, the following research question was defined – What helps and/or hinders patients with chronic pain enrolling in and completing online pain education and self-management programs? To meaningfully answer this question, the COLLECT phase interview and focus group guides were decided to be structured around barriers and facilitators related to the following: (1) program structure, content, and its delivery, (2) technology used to deliver the program, (3) patient (e.g., language barriers, competing priorities, presence of support from family members and/or others), and (4) healthcare providers’ influence on the patient’s decision.

Conclusions

The insights gained from the SET phase will guide the data collection in the COLLECT phase, where we will engage with 30 patients living with chronic pain. The findings of the COLLECT phase will then undergo validation during the REFLECT phase. Participant recruitment, data collection and analysis, and interpretation of findings will be done by our team of PaCER researchers. Patient research partners from the SET phase will continue to act as collaborators throughout the study assisting with recruitment, interpretation of findings, and dissemination. This approach is designed to foster a safe environment for patients living with chronic pain to share their views and perspectives, thus, leading to deep and authentic insights from the study. This approach is critical for understanding the needs of patients living with chronic pain, who often hold reservations toward the healthcare system and traditional academic research due to previous negative experiences.

References

1.Bruce M, Lopatina E, Hodge J, et al. Understanding the chronic pain journey and coping strategies that patients use to manage their chronic pain: a qualitative, patient-led, Canadian study. BMJ Open 2023;13:e072048.
2.Shklarov S, Marshall DA, Wasylak T, Marlett NJ. “Part of the Team”: Mapping the outcomes of training patients for new roles in health research and planning. Health Expectations 2017;20:1428-36.
3.Emes C, Marlett N. Grey matters: a Guide for Collaborative Research with seniors. University of Calgary Press; 2010.
4.Marlett N, Shklarov S, Marshall D, Santana MJ, Wasylak T. Building new roles and relationships in research: a model of patient engagement research. Qual Life Res 2015;24:1057-67.
5.Alberta Pain Strategy 2019-2024. Alberta, Canada: 2019. (https://www.painab.ca/strategy.html).

Presenting Author

Elena Lopatina

Poster Authors

Elena Lopatina

MD, PhD

Alberta Health Services

Lead Author

E-mail

Topics

  • Patient Engagement and Co-Creation in Research and Education