Patient concerns and engagement are integral to understand the impact of disease. This initiative will identify patient-reported concerns by exploring patients’ questions, the caregiver experience, and how we can provide the intended beneficiaries of our research with the most accurate information.
This will give patients with Lupus a voice in setting priorities and the research agenda. Building on this seed grant, our ultimate goal is to capture patient-reported concerns from three subgroups:
- Patients newly diagnosed with Systemic Lupus Erythematosus (SLE)
- Patients with long-standing disease
To foster engaged research in the Lupus setting, we will assemble a research team of the intended beneficiaries, including the three subgroups, above to guide the project. This first phase will focus on this partnership, leveraging our connections with nonprofits, social media support networks, researchers, and clinicians. The first major step toward our longer-term goal will be to develop a survey instrument soliciting the concerns of caregivers and patients.
Dr. Julia Simard will work with Stanford’s Institutional Review Board for an ethics review. Together with Ms. Rowena Rodriguez, we plan to disseminate the survey via social media—including via a closed Lupus support group with more than 12,000 members (predominantly patients and their caregivers). We will incorporate important feedback from the research team, with opportunity for patient engagement in analysis, interpretation, and dissemination of the work. We will demonstrate feasibility in the setting of SLE, but this work will be translatable to other important clinical concerns.