Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project
Patients with rare diseases (RDs) often have limited treatment options, contributing to their strong desire to participate in research [6, 10]. However, many patients with RDs lack knowledge and experience in patient-centered outcomes research (PCOR), limiting their capacity to engage with PCOR researchers more specifically. To address this unmet need, the University of Maryland, Baltimore (UMB) in partnership with the National Organization for Rare Disorders (NORD), developed a PCOR educational program specifically for patients with RDs and advocates to increase their ability to engage in PCOR. While framework-driven models are often advocated for use by outcome researchers and healthcare providers, [1, 2, 3, 4, 5, 6, 7, 8] there are few to sustain interest inpublished examples of how to operationalize these frameworks. [3, 9].
This research letter provides an example of a multi-method patient-engagement approach used to develop a PCOR training program specifically for a...
We acknowledge the contributions of the National Organization for Rare Disorders (NORD) for their collaboration throughout the development and delivery of the training program; Dr. Divya Shridharmurthy for her project support. We thank the members of the project’s Patient Advisory Committee: Ron Bartek, Friedreich’s Ataxia Research Alliance; Marc Boutin, National Health Council; Christine Brown, National PKU Alliance; Laurie Burke, The Lora Group; Rachel Gomel, PSC Partners Seeking a Cure; Reta Honey Hiers, R.N.C., Tarlov Cyst Disease Foundation; Jack Kelly, Lymphangiomatosis & Gorham’s Disease Alliance; Jacqueline Kraska, formerly with NORD; C. Daniel Mullins, University of Maryland School of Pharmacy; and Christopher Scalchunes, Immune Deficiency Foundation.
Compliance with Ethical Standards
This project was funded by the Patient-Centered Outcomes Research Institute under contract 1036-UMD.
Conflict of Interest
All authors declare that they have no conflict of interest.
- 2.Available from: http://www.pharmacy.umaryland.edu/centers/summerinstitute. [Accessed].
- 4.Available from: https://www.pcori.org/engagement/what-we-mean-engagement. [Accessed].
- 11.Available from: https://www.pcori.org/research-results/2015/pcor-training-program-rare-disease-patient-advocates. [Accessed].
- 12.Available from: https://www.pcori.org/events/2016/advisory-panel-rare-disease-fall-2016-meeting. [Accessed].
- 13.Available from: https://rarediseases.org/. Accessed.