by Cindy Leyland, EMBA – Project Director, PAINS Project

As we reported earlier, PAINS is working with Dr. Olivia Carter-Pokras at the University of Maryland on Patient Voice, a PCORI-funded project, which seeks to include chronic pain patients in the design and delivery of cultural competency/health literacy curriculum for PCORI researchers in an inter-professional setting.

In May, we held an in-person meeting in Pittsburgh, Pennsylvania, attended by 23 patients living with chronic pain and caregivers, along with 19 researchers (patient-centered outcomes research, chronic pain), cultural diversity experts and other stakeholders. Specific objectives for the meeting were to:

  • Review core knowledge, skills and attitudes needed by researchers to be competent in cultural diversity
  • Identify cultural diversity skills needed to communicate with people living with chronic pain regarding all aspects of research
  • Describe methods to effectively deliver cultural diversity education and include people living with chronic pain in the development, delivery and evaluation of the educational programs
  • Describe methods for evaluating and assessing training in cultural diversity
  • Identify research questions regarding the role of people living with chronic pain in cultural diversity education of researchers
  • Facilitate opportunities for collaboration on cultural diversity education of researchers and involvement of people living with chronic pain

Patients were recruited using email listservs and newsletters from chronic pain organizations (e.g., PAINS, National Fibromyalgia & Chronic Pain Association) and the National Health Council). Additional patients learned about the meeting through word of mouth. PCORI-funded researchers working in chronic pain and speakers and local researchers attending the American Pain Society Annual Scientific Meeting were invited, as well as attendees of earlier meetings regarding cultural competency curriculum development hosted by the National Consortium of Multicultural Education for Health Professionals. Patients represented a wide range of health conditions (e.g., fibromyalgia, diabetic foot pain, reflex sympathetic dystrophy, migraines, complications from mesh surgery). Researchers included practicing health professionals (e.g., anesthesiology, psychiatry, nursing) as well as PhD-trained researchers from academia and the Department of Veterans Affairs. Other stakeholders included representatives from a state office of minority health, pain advocacy organizations, and the American College of Rheumatology.


At the start of the meeting, we provided a brief oral summary of the background work leading up to the in-person meeting which included an update of an existing literature review, one English language focus group of patients living with chronic pain, and one Spanish language focus group of patients living with chronic pain, and eight in-depth interviews with invited researchers who were unable to participate in the May 17 meeting. Participants were assigned to one of seven round tables to ensure a mix of researchers, patients living with chronic pain and other stakeholders at each table in addition to a planning committee member. Each of the seven work groups discussed the guiding questions we provided and shared highlights from their discussions in two report-out sessions. An illustrator captured key ideas from the discussions on paper.

Prior to the meeting, participants were provided links to four short videos on six stages of research, PCOR and chronic pain, cultural competency and health literacy, a written summary of our literature review update and focus group results, agenda, and background reading on chronic pain, cultural competency and health literacy, and patient-centered outcomes research. We also provided a glossary of key terms.

At the meeting, we provided hard copies of the agenda, list of participants, evaluation form, instructions for reimbursement, summary of the literature review update and focus groups results and the front part of a primer on cultural competency and health literacy materials.

Accommodations for the Participants

A local Reiki master volunteer provided brief Reiki sessions to individuals who were interested. The nearby Westin hotel provided two rollaway beds and extra pillows. The convention staff provided rolls of paper that could be used to cover the pillows. Gluten- and dairy-free options were available for the lunch, as well as the protein bars. Travel tips were provided to the participants in advance (e.g., how to request a wheelchair for the airport), and we covered airfare and hotel costs directly. A van was ordered to transport participants from one of the hotels to the meeting space.

Evaluation form results

To date, we have received completed evaluation forms from 33 out of 42 participants (79%). At least 85% agreed or strongly agreed that they were able to address each of the meeting objectives by the end of the meeting. The comments on the evaluation form do not capture the verbal comments that were provided by participants, as well as the follow-up emails and phone calls that we are now receiving. Our format of having round table dialogues was unusual for both patients and researchers. A sample comment from an email sent to the organizers immediately following the meeting: “This format was ideal and the discussions were well-focused and well-guided.” This sentiment was shared by other patients as well as researchers.

Reflection about discussions

In an effort to increase patient participation, we placed only first name and first initial of last name on name tags, and encouraged simple introductions. A benefit of doing this is that patients were not intimidated by the physicians or researchers at their table. A downside (per evaluation comments) is that some of the participants did not recognize how many researchers and clinicians were present in the room. Given the number of positive emails and phone calls we have received from participating patients, the planning team feels that the benefits outweighed the downside.

Sample points that were made included:

  • A lot of people don’t know how research is done. People were struggling with understanding about research and research stages.
  • Researchers don’t even know that they need this training.
  • Although clinical researchers may receive training in cultural competency (sometimes required), they do not generalize and apply what they have learned from cultural competency/health literacy training into their research.

Next steps include broad dissemination of the project report, including presentations at future conferences, and development of manuscripts for further review and study.

Acknowledgements: Funding for this meeting was made possible in part by the Patient-Centered Outcomes Research Institute (PCORI).

Disclaimer: The statements above are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.

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