PCORI’s recent 2018 Annual Meeting showcased PCORnet-related research through more than 14 posters over the meeting’s three days. These posters highlighted PCORnet’s innovative tactics for patient recruitment and engagement, the power of PCORnet’s data and infrastructure, and patient-centered research in action. Here are some of the highlights:
Patient Recruitment & Engagement
The first step of patient-centered research is to figure out ways to bring patients into the fold—and keep them there. Several PCORnet posters at the Annual Meeting offered tactics for doing just that. For example, the OneFlorida Clinical Research Consortium, a PCORnet partner network, outlined the merit of collaborating with Citizen Scientists to create a learning curriculum on topics ranging from research ethics to cultural competency. The method was effective in bridging the gap between researchers and the community, as well as setting realistic expectations of the research process from both perspectives.
Patients participate more when the research matters to them. That’s why PCORnet’s Pulmonary Collaborative Research Group presented a poster on its work to assess which research questions are high priority to the pulmonary fibrosis community. Several posters presented at the meetings reflected lessons learned from patient-centered research conducted through PCORnet, such as the ADAPTABLE team’s lessons on improving retention in clinician and patient engagement, the PCORnet Coordinating Center’s lessons from PCORnet’s first chapter, and the MoodNetwork’s lessons learned on the challenges of stigma and mental health in study recruitment.
The Power of PCORnet Data & Infrastructure
PCORnet’s infrastructure is unique, and its data reach is wide. Several posters offered views of PCORnet’s power with real-world examples, such as Harvard Pilgrim’s showcasing how the standardized querying infrastructure and reusable tools PCORnet offers can give researchers answers in weeks versus months. A unique feature of PCORnet is its availability of lab result data, which enables research that can identify a cohort based on a lab value. The PCORnet Coordinating Center presented a poster on how they curated this data, readying it for study planning, reporting, and data quality monitoring.
PCORnet’s data power is increasing with the inclusion of Health Plan Research Networks as PCORnet partners, which now offers researchers the option of claims data to identify study participants. An ADAPTABLE team poster highlighted this strategy. Other PCORnet colleagues showcased work on the need to continually improve PCORnet’s data capacity to promote more equitable health research in the future.
Patient-Centered Research in Action
At the heart of PCORnet is the belief that patients should always have a seat at the table, working hand-in-hand with other stakeholders to generate insights that matter. A trailblazer for patient-centered research, PCORnet and its partner networks took the notion of patient-centerednessfrom concept to practice, launching studies that showed the research community it can be done. Posters showcasing the COPD network’s study of the patient burden of cough and phlegm and REACHnet’s study of older patients’ views on non-face-to-face diabetes chronic care management provided examples. In addition, a Health Systems Demonstration Project poster revealed how the team worked with patients to better understand the impact of clinical and social complexity on diabetes control.
This recap only offers a glimpse of the expertise our PCORnet teams had on display at the PCORI Annual meeting this year, but if you’d like more detail, you can visit the full list of displayed posters. Congratulations to all who exhibited their great work!