Swimming with the experts: One patient’s dive into health systems research
‘Learning to “swim” with the experts: experiences of two patient co-investigators for a project funded by the Patient-Centered Outcomes Research Institute’ was the first journal-reviewed paper I co-authored as a patient. This paper was about the development of a community-clinic liaison role central to the Learning to Integrate Neighborhoods with Clinical Care (LINCC) project that was my patient initiation into health research partnering. The study protocol incorporated two patient co-investigators into the research science team, and I was fortunate to be one of them. The patient co-investigator role was both pioneering and innovative and we were considered LINCC science team project partners, bringing subject matter expertise and unique perspectives throughout the study processes, and providing relevant foundational information complimenting the principal investigator and research team. We sat at the same table with leading research scientists, clinicians, a biostatistician, a medical anthropologist at the respected Group Health, now Kaiser Permanente Washington Research Institute. Trainings, mentoring discussions and moments of awkwardness amalgamated into an understanding of how we could benefit each other as team members. We dove headfirst into the untested ‘patients as partners’ research team waters – onboarding and integrating patients into the research team was new for all of us.
Learning health systems: Patients as partners
Learning health systems (LHS) are intersections where embedded research, evidence-based medicine and clinical practice meet, where patient outcomes are a priority. The Patient-Centered Outcomes Research Institute (PCORI) funded the LHS project LINCCare, where patient involvement was central and incorporated at multiple levels in the project. Patients were serving as patient co-investigators and represented half of the members of the community-clinic liaison intervention co-design team. Twelve patients and 11 health professionals from two healthcare clinics were co-designers in the ‘plan-do-check-act’ process. The co-design team came up with the name for the intervention role: the community resource specialist (CRS). The development of the LINCC CRS intervention role was purposeful, where the diverse stakeholders collaborated in writing the job description, developing appropriate training, identifying suitable electronic health record involvement, determining placement priority in clinics and outlining the future expectations for the position. The design process was collaborative in nature. The goal was to develop and embed a new swim lane position in the health system; the CRS would identify where patients need help, offer resource options, and help patients prioritise health goals and social needs to benefit the patient, healthcare teams and system overall.
Initiating and building research community and patient partnerships take time, and developing trusting relationships should be a priority for research teams. In health systems research, allocation of funds for relationship building is necessary to effectively identify, engage and connect with community members to allow for research stakeholder relationships to be sustainable. As prospective patient co-investigators, my fellow patient co-investigator and I were initially approached by our health system governance lead, where we had both been actively serving as advisers in differing roles. We agreed to read the PCORI-funded LHS proposal, and had the opportunity to provide insights on how to make the proposal stronger. When composing research project proposals, inviting community members and patients to review and provide input can bring relevance and strength to the study proposal. Discussing possible project opportunities and outcomes with community members/patients should be a priority for any team meeting.
COVID-19: Community resource specialists provide a delivery system lifeline
When the first COVID-19 wave struck shore in Puget Sound, Washington, the LINCC project CRS intervention had already been fully integrated into 28 Kaiser Permanente Washington clinics. Kaiser Permanente is both an insurer and healthcare-delivery organisation that embraces an integrated person-centred care delivery model. In the early days of COVID-19, many patients were reaching out to the CRSs for social needs assistance, including access to food, internet, safe housing, transportation, peer-support services and more. It quickly became apparent that the CRSs were serving as lifeguards in the delivery system with their ability to refer individuals to needed resources. Recognition of social determinants of health and the need to address disparities and inequities during the pandemic was suddenly at the forefront of most healthcare systems. Addressing both social needs and complex care was, and still is, a priority. Living or wading through tumultuous tides are challenging for many of us and we have found the CRSs were, and are, a delivery system lifeline.
I jumped into the deep end when I joined the LINCC research project team. The opportunity to serve as a patient co-investigator has led to many patient partnering opportunities and, to this day, I often reflect on how and what was achieved during and after that project. Since diving into this research, I have served on many health systems research projects; reviewed thousands of health-related abstracts for conferences; presented on my patient journey; served as a public panel member on multiple guidelines; participated in human readable computable evidence generation, terminology and taxonomy development; and been fortunate to have co-authored peer-reviewed papers. I would like to thank PCORI, Kaiser Washington Research Institute and everyone who took a chance on allowing me to swim in their research pool; it has brought great joy and improvement to my life.
Lessons learned as patient partner
There are many lessons I have learned from the successful LHS LINCC project. Collaboration with diverse stakeholders provides a holistic approach to learning health systems research, where gaps are easily identified and can be addressed collectively and early in a project. Respect for, and amongst, research team members is important for trust and relationship building. Research is about learning together while acknowledging that life happens. Patients bring relevance and important perspectives to research processes from proposal to evaluation. I have found that swimming in my own lane is not a detriment, but an opportunity to learn as a patient partner, to contribute to science in a meaningful way. I also realise that, at unexpected times, we need lifeguards when tumultuous tides manifest and that, at other times, there are no swim lanes at all.
Additional information:
Three articles co authored LINCC project
Learning to “Swim” with the Experts: Experiences of Two Patient Co-Investigators for a Project Funded by the Patient-Centered Outcomes Research Institute - PMC (nih.gov) 2016
Evaluation of the Learning to Integrate Neighborhoods and Clinical Care Project: Findings from Implementing a New Lay Role into Primary Care Teams to Address Social Determinants of Health | The Permanente Journal 2018
Engaging patients in primary care design: An evaluation of a novel approach to codesigning care - Hertel - 2019 - Health Expectations - Wiley Online Library 2019
More on CRS Intervention award 2021:
Award-winning innovation that comes from the heart | ACT Center (act-center.org)
Disclaimer
The views expressed in this World EBHC Day Blog, as well as any errors or omissions, are the sole responsibility of the author and do not represent the views of the World EBHC Day Steering Committee, Official Partners or Sponsors; nor does it imply endorsement by the aforementioned parties.
