1. Research Explained by the National Pediatric Cardiology
Quality Improvement Collaborative (NPCQIC)
Richard James MSLIS, NPCQIC Family CaRes (Cardiac Resiliency) Working Group
About NPCQIC
Results
Methods
A network of 60 pediatric cardiology centers across the USA and the parent organization Sisters By Heart, working as a collaborative learning network to improve outcomes for children with Hypoplastic Left Heart Syndrome (HLHS), a single ventricle congenital heart defect, and their families.
NPCQIC supports a national registry of outcomes data used to support research and QI. Best practices derived from these projects have been associated with dramatic improvements in mortality and morbidity both in-hospital and in the “interstage” between surgical treatments.
A list of supported publications was generated and reviewed for current accessibility. 8 articles were found to be already available from PubMed Central or publisher websites.
Publishers’ access policies for the remaining articles were researched through the SHERPA/RoMEO database (
Authors were contacted where their copyright agreement allowed for some version of their article to be made publicly available.
Follow-up contact was made by the NPCQIC research workgroup when authors were unresponsive after 3 months.
Eligible papers were listed on a shared spreadsheet along with any necessary contractual language required by the publisher.
Full text versions of the papers were uploaded to the NPC-QIC website.
After screening for eligibility, 21 articles were made available in full at
Background
NPCQIC has a unique model of shared governance by clinicians and parents of children with HLHS. Parents serve as equal partners in every project team and working group of the collaborative.
The Collaborative recognizes and welcomes the diversity of education and expertise within the organization, but concerns exist that parents may feel inhibited from full participation .
NPCQIC bridges the knowledge gap through its collaborative and welcoming organizational culture and through programs that interpret research findings for multiple audiences.
Parents are typically unable to access NPCQIC-supported research due to lack of academic affiliations and restrictions on sharing research.
The Author- a parent with a background in academic libraries and scholarly publishing- proposed an effort to “open” NPCQIC’s research to its parent members and outside stakeholders.
Conclusions
The proposal to create a small scale full text repository for NPCQIC-supported research provided the opportunity to create a replicable and sustainable workflow that was embraced by authors and administrators and has been integrated into the Collaborative’s research support procedures.
While Open Access to medical research literature remains an elusive goal, small-scale projects directly serving both the research and consumer stakeholders in specific initiatives may prove to be more impactful than broader campaigns with less coherent goals and audiences.