PCORnet Best Practice Sharing Session: Stakeholder Contributions to Scientific Manuscripts and A Web-Based Platform for Engaging and Connecting Patients & Caregivers
August 29, 2017 @ 1:00 pm EDT - 2:00 pm EDT
The PCORnet Bariatric Study (PBS) uses data from 11 CDRNs, representing up to 53 health care delivery sites, to compare the risks and benefits of three bariatric procedures used for weight loss. This Best Practice Session will cover learnings from our project team on including stakeholders in our project.
Writing Manuscripts: Writing groups in the PBS consist of investigators from each data-contributing site, diverse stakeholders, and study staff. Prior experience with the scientific writing process varied considerably amongst authors. We will present the manuscript development process we implemented and our learnings from working with stakeholders to write the first study PBS manuscript. This experience has led to the development of an author “Q&A” document, which can be shared with other investigators who are interested in people-centered research.
Developing a Patient and Caregiver Web Community (Smart Patients, Weight Management Community): The PBS team leveraged an existing platform that facilitates online patient communities (Smart Patients) to meet our stakeholders’ request for a forum in which bariatric patients could share their experiences. In collaboration with the Obesity Action Coalition and PBS investigators and stakeholders, Smart Patients has created a weight management online community. It includes, but is not limited to, patients who have had bariatric surgery or might be interested in a bariatric procedure. Patients from some of the Clinical Data Research Networks (CDRNs) have been instrumental in the formation and growth of the weight management community.
- Kathleen McTigue, MD. is the Co-Principal Investigator of the PBS. She is also the lead Principal Investigator of the PaTH Clinical Data Research Network and has a track record of scientific discovery focusing on how body weight influences health, evidence-based weight management, and patient-centered care. Kathleen McTigue is a general internist and an Associate Professor of Medicine, Epidemiology and Clinical/Translational Science at the University of Pittsburgh.
- Karen J. Coleman, PhD. leads the PBS Executive Stakeholders and dissemination strategies to share our findings with everyone interested in study outcomes – not just researchers. She is a behavioral scientist and focuses the behavioral, social, and environmental determinants of success after weight loss surgery and interventions in primary care for adult depression. She has over 15 years of experience with Community Based Participatory Research and stakeholder engagement. Dr. Coleman is affiliated with the PORTAL CDRN.
- Roni Zeiger, MD. is the co-founder and CEO of Smart Patients, an online community for patients and family members affected by a variety of health conditions. Roni’s goal is to enable patients to learn more from each other while also enabling the health care system to learn more from patients. He is the former Chief Health Strategist at Google.
- Kathryn Burn. is the Head of Partnerships and Research at Smart Patients, and part of a dedicated team that supports the online community for patients and families affected by serious illness, as they learn from each other about treatments, challenges, and how it all fits into the context of their experience. In her current role, Kathryn forges partnerships with a broad array of healthcare groups both to grow patient communities and to help partners learn from them in a privacy-respecting manner.
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