Written By: Emily Parks
The PATIENTS Program at the University of Maryland School of Pharmacy, in partnership with the St. Lawrence Health (SLH) Clinical and Rural Health Research Department, completed a successful project to provide information to New York’s North Country region about issues surrounding COVID-19 and the importance of patient-centered research.
PATIENTS stands for PATient-centered Involvement in Evaluating the effectiveNess of TreatmentS. The program invites patients with all kinds of conditions to get more involved in their health care by making informed, empowered decisions while connecting patients with the research and clinical trials that are of interest to them. The PATIENTS Program puts an emphasis on patient advocacy to foster partnerships between patients and researchers.
As part of the project, titled Developing InfraStructure for Research to Utilize Patient-centered Techniques (DISRUPTS), the PATIENTS Program worked with SLH providers, clinical staff, patients, and community members on how to successfully engage the community in patient-centered outcomes research (PCOR). Webinars were co-developed to shape patient-centered research in this rural area of Northern New York.
PCOR means that researchers work with patients and stakeholders to identify and address questions and outcome measures of importance to patients and the community, making sure to include the patient voice when research questions are developed, in research design, implementation, and results sharing.
In Fall 2020, the DISRUPTS project received additional funding to create webinars that expanded the community’s understanding of PCOR in the context of the COVID-19 pandemic. The webinars, hosted on St. Lawrence Health Clinical and Rural Health Research Department’s website, were informed by different perspectives and experts from the community to explain current safety measures, vaccine facts, and more.
“Input from our Stakeholder Advisory Committee, which consisted of patients, past research participants, community members, and clinical and non-clinical health care workers, drove the content of these webinars,” said Carly Lovelett, MS, MBA, CCRP, director of clinical research with St. Lawrence Health System. “The patient-centered outcomes research webinars had a 112% attendance rate, meaning more people attended the sessions than originally registered. The DISRPUTS team was proud to provide information about how the North Country community can get involved in research as well as critical information about COVID-19, allowing the North Country community to take charge of their health. We were happy to learn that the webinars were all well-received, with attendees indicating high satisfaction on a series of feedback questions.”
“By working with St. Lawrence Health to help create a patient-centered research infrastructure, our focus was to improve the health of the North Country in rural upstate New York,” said Michelle Medeiros, MS, MA, CCRP, director of research with the PATIENTS Program. “We involved the community in creating webinars to provide critical information about COVID-19 and getting involved in research. We at the PATIENTS Program were proud to work with the community on the project.”
The project developed a series of webinars about patient-centered research, as listed below (links to the recordings included):
Learning Together, Leading Together: Shaping Patient-Centered Research in the North Country:
Part 1: Introduction To and Examples Of Patient-Centered Outcomes Research.
Part II: Research Methods and Engagement Principles
Part III: Key Considerations for Engaged Research and the Importance of PCOR and Community Involvement
The COVID-19 public information webinars are listed below:
Topic: Vax Versus Fiction: Answering Questions and Presenting the Facts about COVID-19 Vaccines
Discussion included comparing the Pfizer and Moderna vaccines, vaccination safety, phased approach to vaccine distribution, herd immunity, and how to prepare to get the vaccine and what to expect. Presented by Kylie Broughal, PA-C. Watch a recording of the webinar.
Topic: COVID-19: Fact Versus Fiction
Discussion included COVID-19 compared to the flu, the effectiveness of masks and social distancing, and COVID-19 testing. Presented by Kylie Broughal, PA-C. Watch a recording of the webinar.
Topic: COVID-19 in Rural America
Discussion included how COVID-19 can be treated, and how the pandemic is different here than in urban America. Presented by Eyal Kedar, MD. Watch a recording of the webinar.
Topic: COVID-19 and Mental Health/Substance Use (not aired live; distributed as recorded videos):
– The Impact of COVID-19 on Substance Use, presented by: Emily Marquart, LMHC, CASAC; Emma Brackett, LCSW, CASAC; and Elizabeth Stiles, LPN
– Navigating COVID-19 and the Impact on Children and Families, presented by: Heather Rich, LCSW, CASAC; and Laurie Zweifel, PhD
– COVID-19 and School, presented by: Andrea Randall, Canton Central School Social Worker
– COVID-19 and Mental Health, presented by Tyree Smith
– St. Lawrence County COVID-19 Response: A Year in Review, presented by: Dana McGuire
“Patient-centered research is important to the health and wellness of our community,” explained Jolene Carotenuto, RN, a nurse educator with SLH and an attendee of the PCOR series. “By focusing on the unique needs of our rural population, patient-centered research brings local health care needs to the national stage and brings national research efforts to our small community.”
Future plans for the DISRUPTS team include continuing a patient-centered research focus group in an effort to ensure SLH research incorporates the patient voice and investigates topics important to North Country residents.
This two-year initiative was partially funded through a Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI), which is a non-profit organization that funds studies that can help patients and those who care for them make better-informed healthcare choices. The statements presented in this article are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.
The PATIENTS Program, founded in 2013, envisions a world in which patients and stakeholders are heard, inspired, and empowered to co-develop patient-centered outcomes research (PCOR.) The PATIENTS Program is an interdisciplinary research team of community partners and researchers housed at the University of Maryland School of Pharmacy that works to change the way we think about research by creating a path for health equity in West Baltimore and beyond. The PATIENTS Program at the University of Maryland School of Pharmacy was one of seven health services research institutions funded through a five-year infrastructure development grant from the Agency for Healthcare Research and Quality to develop capacity for patient-centered outcomes research (PA-12-114.) The goal of health equity research is to eliminate the inequities (social and economic factors) faced by underserved populations. Our priority is to engage underserved populations in research to improve the wellbeing of people and communities. Visit www.patients.umaryland.edu to learn more about the PATIENTS Program.