In the Right Place at the Right Time: Patient Partners Attend HCSRN 2018
For the second year, patient partners from the PORTAL network have attended the annual conference of the Health Care Systems Research Network.
By Chalinya Ingphakorn, Project Manager
Collaboration between researchers and patients is an emerging theme in the research realm. But what’s all the buzz about? For the second year, patient partners from the PORTAL network have attended the annual conference of the Health Care Systems Research Network (HCSRN). PORTAL stands for Patient Outcomes Research to Advance Learning, a name that speaks to the importance of putting real-world patient concerns at the center of research.
PORTAL is a clinical data research network funded by the Patient-Centered Outcomes Research Institute, and it includes a Patient Engagement Council (PEC) made up of patients from several health plans who represent cohorts in the areas of obesity, colorectal cancer, and congenital heart disease. These PEC members offer valuable perspective and guidance to researchers by participating in webinars, conference calls, and in-person meetings.
At this year’s HCSRN conference, I was honored to help conduct a pre-conference workshop exclusively for the PEC. The meeting was co-led by Carmit McMullen, senior investigator at the Kaiser Permanente Center for Health Research, and Carolyn Taylor, a patient partner from the KP Mid-Atlantic States region and faculty member at George Mason University. Suzanne Gillespie, my colleague here at CHR, was also in attendance.
At this year’s pre-conference workshop, eight PEC members learned how to use Twitter to raise awareness about patient partners and research, and Carolyn Taylor took the PEC through a step-by-step process for effective and thorough research article evaluation. Using the hashtag #HCSRN18, PEC members learned how to provide feedback about the conference in real time. For some in the room, it was their inaugural tweet!
PORTAL’s Patient Engagement Council attended the 2018 HCSRN conference. Front row (L-R): Chuck Anderson, Henry Werch, Reese Garcia, Carolyn Taylor. Back row (L-R): Chalinya Ingphakorn, Carmit McMullen, Janice Tufte, Mickie Bowe, Nicole Sanchez, Les Taylor, Suzanne Gillespie
Making Their Voices Heard
In the opening plenary of the HCSRN conference, J. Michael McGuiness of the National Academy of Medicine set the tone by saying that the work of patient partners “rings true in our learning health systems.” The patient partners I spoke with at the conference agreed, with one of them remarking, “We’re excited! We really feel like we’re in the right place at the right time.”
"Lunchtime Office Hours – Join Us"
During the lunch break, attendees are invited to meet with the PEC to talk about patient engagement, ask questions, and enlist them to participate on a research project.
Carmit McMullen (Investigator), Nicole Sanchez (PEC)
Reese Garcia (PEC), Matthew Nielsen (Investigator)
The PEC spent the next three days attending poster sessions, evaluating the findings presented to them, and approaching the podium at plenary sessions with no hesitation to ask questions. They sought out concurrent sessions that interested them personally and gave them a chance to represent patients and caregivers alike with their voices. Seeing the PEC in action gave me a strong sense of pride. It was great to see patients make their way into the world of research and really have their voices heard.
The PEC is available to collaborate with researchers from the three PORTAL network health care delivery systems (Kaiser Permanente, HealthPartners, and Denver Health) on every step of the research process, from study conceptualization to survey feedback and manuscript review. If you are interested in working with patient partners, please reach out to Carmit McMullen (Carmit.McMullen@kpchr.org). PORTAL has funding to work with you on pilot and pre-award work through March 2019. We can help to get preliminary data from patients, find patient partners for advisory boards, and assemble biosketches or letters of support as needed.
We are already looking forward to the 2019 HCSRN conference, which will be held April 8–10 in Portland, Oregon. The director of the Center for Health Research, Dr. Lucy Savitz, is chairing the 2019 HCSRN planning committee. We’re proud that our PEC co-lead, Dr. Carolyn Taylor, is also serving on the planning committee. We are also taking steps within the Kaiser Permanente Northwest region to build synergies and relationships in partnership with Jennifer Baisa, regional director of Person and Family Centered Care.
The PEC is eager to engage. Patient partners want to hear from researchers, and they want researchers to make use of their perspective and expertise. I will leave you with the PEC’s closing words to researchers at the final session of the HCSRN conference: “Seek us out!”