Title : Best practices for co-creating patient facing materials and their application in primary ovarian insufficiency
Abstract:
Unmet health and informational needs contribute to impaired health-related quality of life (HR-QoL) identified in people with primary ovarian insufficiency (POI). The process of co-creation engages and empowers patients to produce high-quality materials that respond to patient-identified needs. We aimed to use the co-creation process to produce patient-facing materials that mitigate health disparities and improve HR-QOL for people with POI. The project involved three steps. First, we synthesized the state of the science on HR-QoL as well as the care and management of POI. In parallel, we conducted a scoping review to identify best practices for co-creating patient-facing materials and partnered with POI patients to co-create materials using the “design thinking” process materials (i.e., empathize, define the question, ideate/brainstorm, iterate prototypes (n=4), and testing). The “gold standard” Patient Education Materials Assessment Tool (PEMAT) was employed to assess co-created materials.
The HR-QoL scoping review identified three inter-related themes regarding impaired HR-QoL in POI (diagnostic odyssey, isolation & stigma, and ego integrity) along with sub-themes of decreased sexual function, altered body image, psychological vulnerability, and catastrophizing. The co-creation scoping review identified 6 best practices for co-creation: (1) begin with a review of the literature, (2) utilize a framework to inform the process, (3) involve clinical and patient experts from the beginning, (4) engage diverse perspectives, (5) ensure patients have the final decision, and (6) employ validated evaluation tools. We then partnered with patients with POI to employ these practices in the creation of patient-facing materials. The final 2-page patient-facing materials were evaluated using 7 readability algorithms revealing a consensus reading level of 7th grade (fairly easy to read for an 11-13 year-old). The patient partners rated the materials as highly acceptable and actionable. The online PEMAT evaluation is underway in collaboration with POI patient organizations. We envision such co-creation will produce understandable and actionable materials determined with PEMAT domain scores >80%. This project may serve as a roadmap for healthcare organizations and patients to collaborate and surmount health disparities and improve care for other health conditions.
Audience Take Away:
- Modifiable factors for targeting health-related quality of life needs in patients with POI
- Best-practices for co-creation of educational materials with patient partners
- Access to high-quality, patient-evaluated educational materials on the diagnosis of, care for, and living with POI.
