Introduction: Engagement of patients and clinicians is critical to generating evidence that is relevant to their concerns and values. There is meager understanding of optimal engagement for person-centered outcomes research (PCOR). High-touch methods such as in-person focus groups are not easily scaled to larger groups, while high-tech methods such as online surveys can be superficial. We address this gap by assessing deep, high-tech engagement in a clinical data research network.
Methods: We conducted panels for heart failure (HF) and Kawasaki disease (KD) to set PCOR priorities, using online software and Delphi method, a deliberative and iterative approach to attaining consensus with discussion and statistical feedback. Topics were rated using five criteria--informed decision making, collaboration, relevance, impact, innovation—applied to aspirational goals. Adult panelists with HF or KD (parents), clinicians, and researchers were recruited nationally via social media or network sites. Participants were randomized to either a single-stakeholder (patient or clinician) or mixed (patients, clinicians, and researchers) blinded panel. Participation was online, asynchronous, and took four hours over four-weeks. Analysis included rank-ordered topics (mean score), consensus (positive agreement) within panels, and comparisons across panels.
Results: (See Table 1) 228 panelists participated. HF and KD yielded top priorities. HF patients achieved full consensus while other panels resulted in partial consensus on all topics. HF patients differed from clinician and mixed panels on most criteria. KD patient and mixed panels achieved full consensus on two topics.
Conclusions: We demonstrated that structured, high-tech engagement of stakeholders can yield rich contributions for PCOR. In this first of its kind study of substantial-scale stakeholder engagement in PCOR prioritization, results differed by health condition and stakeholder group.