PROGRESS: A Blueprint for Engaging Sickle Cell Stakeholders to Identify Preferred Patient-Centered Outcomes
Abstract
Background: Sickle cell disease (SCD) is a genetic blood disorder that leads to clinical complications that may impact physical and social well-being. Health scientists have had significant success with clinical and community interventions to treat SCD. However, incongruencies exist between outcomes important to patients and data collected in research studies. To effectively develop patient-centered interventions for SCD, there is a critical need to identify SCD-preferred outcomes by identifying impacts on patients and caregivers and developing a core set of priorities valued by patients, caregivers, and community advocates to disseminate to clinicians, researchers, and stakeholders.
Methods: We implemented an engagement initiative, PROGRESS, to collaborate with SCD stakeholders (patient partners, community advocates, patients, and caregivers) to establish a comprehensive summary of the patient-centered outcomes (PCOs). To facilitate engagement, we applied the Patient-Centered Core Impact Sets Blueprint to guide the prioritization of impacts associated with SCD treatment, ensuring patient voices were focal to determining PCOs. We utilized a structured six-step process to gather input from stakeholders. Engagement activities included project authoritative roles, facilitating convening sessions, and incorporating public feedback to develop a comprehensive list of preferred PCOs.
Results: Through PROGRESS, we developed a standardized list of preferred PCOs valued by SCD patients and caregivers, comparing patient-preferred with provider PCOs. The PC-CIS Blueprint for SCD allowed us to meaningfully engage SCD stakeholders (N = 118) to determine the most important SCD impacts and its treatments on patients’ health, daily life, and that of their families and caregivers.
Conclusion: PROGRESS empowered SCD stakeholders by integrating patient and caregiver preferences to improve SCD healthcare delivery and research frameworks. This initiative could address gaps in care and disparities attributed to SCD. By highlighting patient-preferred PCOs, PROGRESS informs clinical practice and comparative effectiveness research, ultimately fostering equitable healthcare for individuals with SCD.
Keywords
community engagement, stakeholder engagement, patient engagement, community health, community-based research, patient-centered outcomes
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PROGRESS: A Blueprint for Engaging Sickle Cell Stakeholders to Identify Preferred Patient-Centered Outcomes
Background: Sickle cell disease (SCD) is a genetic blood disorder that leads to clinical complications that may impact physical and social well-being. Health scientists have had significant success with clinical and community interventions to treat SCD. However, incongruencies exist between outcomes important to patients and data collected in research studies. To effectively develop patient-centered interventions for SCD, there is a critical need to identify SCD-preferred outcomes by identifying impacts on patients and caregivers and developing a core set of priorities valued by patients, caregivers, and community advocates to disseminate to clinicians, researchers, and stakeholders.
Methods: We implemented an engagement initiative, PROGRESS, to collaborate with SCD stakeholders (patient partners, community advocates, patients, and caregivers) to establish a comprehensive summary of the patient-centered outcomes (PCOs). To facilitate engagement, we applied the Patient-Centered Core Impact Sets Blueprint to guide the prioritization of impacts associated with SCD treatment, ensuring patient voices were focal to determining PCOs. We utilized a structured six-step process to gather input from stakeholders. Engagement activities included project authoritative roles, facilitating convening sessions, and incorporating public feedback to develop a comprehensive list of preferred PCOs.
Results: Through PROGRESS, we developed a standardized list of preferred PCOs valued by SCD patients and caregivers, comparing patient-preferred with provider PCOs. The PC-CIS Blueprint for SCD allowed us to meaningfully engage SCD stakeholders (N = 118) to determine the most important SCD impacts and its treatments on patients’ health, daily life, and that of their families and caregivers.
Conclusion: PROGRESS empowered SCD stakeholders by integrating patient and caregiver preferences to improve SCD healthcare delivery and research frameworks. This initiative could address gaps in care and disparities attributed to SCD. By highlighting patient-preferred PCOs, PROGRESS informs clinical practice and comparative effectiveness research, ultimately fostering equitable healthcare for individuals with SCD.
