St. Lawrence Health System (SLHS) will establish the foundation necessary to successfully engage in patient-centered outcomes research (PCOR) through Developing InfraStructure for Research to Utilize Patient-centered Techniques (DISRUPTS). The DISRUPTS program will be launched in a healthcare system in rural St. Lawrence County, New York. SLHS’s Clinical and Rural Health Research Department, which was established as the first clinical research department in the county in 2015, is leading the program. Due to the recent implementation of the research program, and the rurality of the area, there remains a gap in understanding, education, and training regarding research throughout the community. Establishing a PCOR program will be a disruptive innovation for St. Lawrence County that will shift and enhance the current research program trajectory by involving patients, caregivers, and internal and external stakeholders in the research development, implementation, and dissemination processes. SLHS will standardize the PCOR training used in DISRUPTS, thus ensuring that all trainees are equipped with the skills to conduct and collaborate on PCOR.
The overarching goal is to expand rural clinician and patient community capacity to meet the demand for patient engagement in research and to make St. Lawrence County a hub for health and research excellence. SLHS will conduct the following activities:
- Form a stakeholder advisory committee to guide all aspects of the project.
- Conduct interviews and surveys to gauge the knowledge and training needs of SLHS and its patients.
- Develop a PCOR training program to educate participants regarding the key principles and methods of PCOR based on practices suggested in the PCORI Stakeholder Engagement Rubric.
- Deliver in-person training to at least 20 SLHS clinicians and clinical support staff and 50 of their patients to establish the foundation necessary to successfully engage in PCOR at SLHS.
- Provide online access to training material to ensure PCOR training is attainable for all interested individuals.
- Evaluate the training to identify areas of improvement for future training programs geared toward rural health priorities.
- Engage patients and providers who have completed the training in an ad hoc focus group that may be called on for input on protocols in development and for ongoing research projects.
- Disseminate program information and results to other rural hospital systems that could benefit from PCOR.
The objectives for DISRUPTS are the following:
- Engage the community in the research process in a continuous, authentic, and sustainable infrastructure to inform and enhance participation in research.
- Establish the necessary foundation to successfully engage community patients in PCOR based on their interests, preferences, and concerns.
- Promote community understanding of research through engagement, education, and training.
- Understand the strengths and challenges to provide recommendations for future training and tailor approaches based on community feedback.
SLHS clinicians, internal and external stakeholders, and current and former patients and research participants will be included on the project team and stakeholder advisory committee. Their input will inform the development of PCOR training and other details to ensure that the goal is achieved. The project team will meet biweekly for the duration of the project, while the stakeholder advisory committee will meet monthly for the duration of the project, with ad hoc meetings as needed.
Because SLHS does not currently have in-house expertise in PCOR, it plans to engage with the PATIENTS program at the University of Maryland, Baltimore, to assist in stakeholder identification, education, and training. The PATIENTS Program has a proven track record of both delivering education and conducting patient-centered research.