NASHVILLE, Tenn. In brief, person-centeredness – or patient-centeredness – means putting the person in personalized healthcare and clinical research. It establishes the person as an equal partner in the healthcare delivery process and ensures that their viewpoints are valued and reflected in their care.
The Stakeholders, Technology and Research Clinical Research Network (STAR-CRN) discussed the importance of this with regards to stakeholder engagement during the Academy Health PCORnet Engagement Coordinating Center Show & Share Webinar on July 30, 2020. During their presentation, Meharry-Vanderbilt Alliance (MVA) Research Assistant Professor of Medicine Alecia Fair, DrPH and Research Coordinator Jabári Ichimura described the first quantitative scale for assessing person-centeredness in research.
“Person-centeredness is a measurement we’re able to provide investigators seeking review,” Dr. Fair explained. “We wanted to look at a patient holistically outside of a clinical setting. We know a person can be a patient, a caregiver, a survivor, an advocate. We want to look at their role in the decision-making process.”
STAR-CRN assembled a team of academics and community members to develop that scale, which considers individual and community beliefs, attitudes, concerns, outcomes, priorities and needs. The team members are non-staff members and non-faculty.
“They could be from the community. They could be a patient. They could’ve previously worked on research projects,” Ichimura noted. “Each team member was selected on various advocacy and engagement expertise that they had.”
Dr. Fair leads stakeholder operations of the Stakeholder Engagement Team with STAR-CRN, which is led by Consuelo H. Wilkins, MD, MSCI. It’s responsible for leading and facilitating implementation of person-centered engagement plans, identifying and engaging a variety of stakeholders (patients, caregivers, clinicians, etc.), and collaborating with the Stakeholder Advisory Council.
The Advisory Council, meanwhile, consists of patients, advocates and community members who provide guidance on collaboration requests, advises on person-centered engagement, participates in ad hoc workgroups and advises on the return of results and dissemination of research findings.
Ichimura project manages and coordinates the Stakeholder Engagement Team efforts, leading collaborative engagement and qualitative data collection for multiple projects. He has a diverse science background with clinical expertise as a Certified Nursing Assistant and Phlebotomist.
“I have a background in direct patient care,” Ichimura said, “and I bring that expertise to the work that I do with our team members and our advisory council members.”
Show & Share webinar
The Academy Health PCORnet Engagement Coordinating Center Show & Share Webinar provides networks the opportunity to share their approach to innovative engagement activities with their fellow networks and learn how they might adapt or use this work in their own activities.
The webinar wasn’t the first time the scale enjoyed the spotlight. Dr. Wilkins and MVA Research Assistant Professor Sarah Stallings, PhD first published the Person-Centeredness Scale in the Journal of Comparative Effectiveness Research in 2018. It was showcased later that year at the PCORI Annual Meeting in Washington, DC.
The scale’s aim, according to the journal publication, was “to develop and validate a quantitative instrument to rate person-centeredness of research.”
About the Meharry-Vanderbilt Alliance
Founded in 1999, the Alliance bridges the institutions of Meharry Medical College and Vanderbilt University Medical Center. Its mission is to enrich learning and advance clinical research in three primary areas -- community engagement, interprofessional education and research -- by developing and supporting mutually beneficial partnerships between Meharry Medical College, Vanderbilt University Medical Center and the communities they serve. Through community engagement, the Alliance serves a large community of stakeholders including surrounding universities and colleges, community organizations, faith-based outlets and community health centers. Its interprofessional education enhances students' interdisciplinary understanding and improves patient outcomes through integrated care. The research conducted provides access to experienced grant writers and materials supporting the grant application process and facilitates grant-writing workshops.