Linking practice-based research networks and Clinical and Translational Science Awards: new opportunities for community engagement by academic health centers.
ABSTRACT Practice-based research networks (PBRNs) are a part of many National Institutes of Health (NIH)-funded Clinical and Translational Science Award (CTSA) sites. PBRNs, groups of primary care practices committed to collaborating on practice-relevant research, are unfamiliar to many CTSA leaders. Conversely, the CTSAs, as new research structures designed to transform clinical research, are unfamiliar to many PBRN directors. This study examined the extent to which these programs have congruent goals and expectations, and whether their engagement is likely to be mutually beneficial.
The authors sent a Web-based survey to 38 CTSA community engagement directors and a similar survey to 114 PBRN directors during the fall of 2008.
A total of 66% (25/38) CTSA community engagement directors and 61% (69/114) PBRN directors responded. Two thirds of responding CTSAs reported working with PBRNs, and over half of responding PBRNs reported a CTSA affiliation. Both groups indicated this relationship was important. CTSAs looked to PBRNs for access to patients and expertise in engaging communities and clinical practices. PBRNs reported seeking stable infrastructure support and greater collaboration and visibility in the academic research community. PBRN infrastructure support from CTSAs was highly variable. Both groups perceived considerable promise for building sustainable relationships and a bidirectional flow of information and research opportunities.
With fewer than three years of experience, the PBRN/CTSA relationship remains in the discovery phase; the participants are still negotiating expectations. If these collaborations prove mutually beneficial, they may advance the community engagement goals of many academic health centers.
- SourceAvailable from: Simone van der BurgJournal of Responsible Innovation. 03/2014; 1(1):99-102.
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ABSTRACT: The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement ('translation') of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration.Health Care Analysis 12/2014; · 1.02 Impact Factor
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ABSTRACT: Practice-based research networks (PBRNs) are organizations that involve practicing clinicians in asking and answering clinically relevant research questions. This review explores the origins, characteristics, funding, and lessons learned through practice-based research in the United States. Primary care PBRNs emerged in the USA in the 1970s. Early studies explored the etiology of common problems encountered in primary care practices (eg, headache, mis-carriage), demonstrating the gap between research conducted in controlled specialty settings and real-world practices. Over time, national initiatives and an evolving funding climate have shaped PBRN development, contributing to larger networks, a push for shared electronic health records, and the use of a broad range of research methodologies (eg, observational studies, pragmatic randomized controlled trials, continuous quality improvement, participatory methods). Today, there are over 160 active networks registered with the Agency for Healthcare Research and Quality's PBRN Resource Center that engage primary care clinicians, pharmacists, dentists, and other health care professionals in research and quality-improvement initiatives. PBRNs provide an important laboratory for encouraging collaborative research partnerships between academicians and practices or communities to improve population health, conduct comparative effectiveness and patient-centered outcomes research, and study health policy reform. PBRNs continue to face critical challenges that include: (1) adapting to a changing landscape; (2) recruiting and retaining membership; (3) securing infrastructure support; (4) straddling two worlds (academia and community) and managing expectations; and (5) prepar-ing for workforce transitions.