Healthier Together: Using an Internet-Based Communication Campaign and Improvement Science to Build Engagement in a Learning Network (Preprint)

BACKGROUND Network-based Learning Health Systems that facilitate patient, clinician and researcher collaboration are emerging as a means to improve health and the healthcare system. The first step to engaging in a network is becoming aware that one exists. OBJECTIVE Our objective was to determine whether an Internet-based communication campaign within a network focused on improving outcomes for children and adolescents with inflammatory bowel disease could be used as a strategy for engaging a broad base of stakeholders – patients, families, clinicians and researchers – in a peer-produced learning network. METHODS We developed an Internet-based communication campaign targeting all stakeholder groups (patients, families, clinicians, researchers) in the ImproveCareNow (ICN) Network. Using existing network communication channels and 56 ICN clinical care centers as distribution nodes, we aimed to collect 1,000 expressions of support for collaborative healthcare and ICN over 9 weeks. Participants were stakeholder groups (patients, families, clinicians, researchers) in the ICN Network. Outreach took place via social media, email, blogs, e-newsletters, list-serves, webinars, and ICN clinics. Individuals were asked to post an expression of support on the HealthierTogether.org microsite. We used quality improvement methods to evaluate outreach channels and strategies and guide subsequent outreach interventions. The main outcome and measures were the number of microsite visits, number of posted expressions of support, and microsite visit-to-posted expression conversion rate were tracked daily via run and controls charts to determine impact. RESULTS Over the course of 9 weeks, the microsite received 5,496 visits from 2,183 unique visitors and collected over 1,000 expressions of support for collaborative healthcare, including written statements, photos, and videos. Expressions came from all stakeholder groups, including patients/families/friends (48%), clinicians (30%), researchers (5%), and interested others (17%). Submissions included stories of the importance of collaboration in improving health and healthcare. Frequent, repeated prompting, direct requests from known individuals, and increasing urgency were related to increased postings. CONCLUSIONS An Internet-based communication campaign using network communication channels and care centers can be an effective means of motivating awareness and simple participation in contributing to improvement in care and outcomes.