Stakeholder Engagement

pSCANNER focuses on three conditions:

- Congestive heart failure, a common condition affecting over five million Americans;

- Kawasaki disease, a rare disease that causes heart disease in children and young adults; and

- Weight, a cohort that will be included in every CDRN.

Patients, patient advocates, clinicians, researchers, and administrators who represent the above three conditions are recruited from participating clinical sites and advocacy and patient organizations to participate at all levels of governance and throughout pSCANNER’s activities.

Leadership

Patients serve as co-chairs of our national steering committee and stakeholder advisory board so that we maintain our focus on the priorities, needs, and preferences of patients.

Stakeholder Advisory Board (SAB)

In Phase I, a 45-member stakeholder advisory board (SAB) consisting of half clinicians and half patients and patient advocates was recruited. There were two workgroups of the SAB: SAB–Governance and SAB–Education.

The members of SAB–Governance workgroup served as the stakeholder governance committee whose role was to review the pSCANNER network governance requirements and assist in refining the policy rules to enhance patient-centeredness.  The members of SAB–Education advised on patient and clinical recruitment, provided initial input on research topics, and advised on communication strategies. They met in condition-specific groups (i.e., separately for heart failure, obesity/weight management, and Kawasaki disease).

In Phase II, the main objective of pSCANNER’s SAB is to provide input and guidance for active, meaningful and consequential participation of stakeholders, including patients, patient advocates, clinicians, researchers and health system administrators, in pSCANNER activities. There will be approximately 20 members of the SAB to represent patients/parents, patient advocates, and clinicians. 

The members of the Stakeholder Advisory Board can be found here.

Prioritization of Research Topics

We utilized a modified Delphi method, a deliberative and iterative approach to attaining consensus with discussion and statistical feedback, to set research priorities. The ExpertLens online system was used to facilitate rating and interaction among 360 patients, clinicians and researchers in three condition-specific panels for weight management/obesity, congestive heart failure, and Kawasaki disease. View Educational Videos Here.

Patient Survey

Patients will be contacted about their interest in and willingness to participate in research.  They will also be offered the opportunity to enroll in the research studies that will be conducted across the pSCANNER network.  We are exploring convenient and efficient ways for patients to respond to these surveys including newer technologies and traditional paper surveys.