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  1. Article ; Online: Establishing a Cystic Fibrosis Learning Network

    Thida Ong / Dana Albon / Raouf S. Amin / Julianna Bailey / Srujana Bandla / Maria T. Britto / Jonathan Flath / Breck Gamel / Michael Powers / Kathryn A. Sabadosa / Anna K. Saulitis / Lacrecia K. Thomas / Sophia Thurmond / Michael Seid / the Cystic Fibrosis Learning Network

    Learning Health Systems, Vol 7, Iss 3, Pp n/a-n/a (2023)

    Interventions to promote collaboration and data‐driven improvement at scale

    2023  

    Abstract: Abstract Introduction A learning health network is a type of learning health system in which stakeholders use network organization to improve health and health care. Building on existing resources in the cystic fibrosis (CF) community, the Cystic ... ...

    Abstract Abstract Introduction A learning health network is a type of learning health system in which stakeholders use network organization to improve health and health care. Building on existing resources in the cystic fibrosis (CF) community, the Cystic Fibrosis Learning Network (CFLN) was designed to improve medical outcomes and quality of life through an intentional focus on achieving reliable evidence‐based chronic care delivery and creating a system for data‐driven collaborative learning. Methods We describe the development and growth of the CFLN considering six domains of a Network Maturity Grid: system leadership; governance and policy management; quality improvement (QI); engagement and community building; data and analytics; and research. We illustrate the impact of the CFLN experience on chronic care processes and indicators of collaborative infrastructure. Results The CFLN represents 36 accredited care centers in the CF Foundation Care Center Network caring for over 6300 patients. Of 6779 patient clinical care visits/quarter, 77% are entered into the CF Foundation Patient Registry within 30 days, providing timely means to track outcomes. Collaborative visit planning is occurring in 93% of clinical care visits to share agenda setting with patients and families. Almost all CFLN teams (94%, n = 34) have a patient/family partner (PFP), and 74% of PFPs indicate they are actively participating, taking ownership of, or leading QI initiatives with the interdisciplinary care team. In 2022, 97% of centers reported completing 1–13 improvement cycles per month, and 82% contributed to monthly QI progress reports to share learning. Conclusion The CFLN is a maturing, collaborative infrastructure. CFLN centers practice at an advanced level of coproduction. The CFLN fosters interdisciplinary and PFP leadership and the performance of consistent data‐driven improvement cycles. CFLN centers are positioned to respond to rapid changes in evidence‐based care and advance the practice of QI and implementation science on a broader ...
    Keywords coproduction ; cystic fibrosis ; learning networks ; quality improvement ; Medicine (General) ; R5-920 ; Public aspects of medicine ; RA1-1270
    Subject code 360
    Language English
    Publishing date 2023-07-01T00:00:00Z
    Publisher Wiley
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  2. Article ; Online: Facilitators and barriers to the successful implementation of pediatric antibacterial drug trials

    Amy Corneli / Chris Wheeler / John Bradley / Breck Gamel / Sumathi Nambiar / Gary J. Noel / Li Lin / Jamie N. Roberts / Daniel K. Benjamin, Jr.

    Contemporary Clinical Trials Communications, Vol 9, Iss C, Pp 115-

    Findings from CTTI's survey of investigators

    2018  Volume 120

    Abstract: An urgent need exists to develop new antibacterial drugs for children. We conducted research with investigators of pediatric antibacterial drug trials to identify facilitators and barriers in the conduct of these trials. Seventy-three investigators ... ...

    Abstract An urgent need exists to develop new antibacterial drugs for children. We conducted research with investigators of pediatric antibacterial drug trials to identify facilitators and barriers in the conduct of these trials. Seventy-three investigators completed an online survey assessing the importance of 15 facilitators (grouped in 5 topical categories) and the severity of 36 barriers (grouped in 6 topical categories) to implementing pediatric antibacterial drug trials. Analysis focused on the identification of key factors that facilitate the successful implementation of pediatric antibacterial drug trials and the key barriers to implementation. Almost all investigators identified two factors as very important facilitators: having site personnel for enrollment and having adequate funding. Other top factors were related to staffing. Among the barriers, factors related to parent concerns and consent were prominent, particularly obtaining parental consent when there was disagreement between parents, concerns about the number of blood draws, and concerns about the number of invasive procedures. Having overly narrow eligibility criteria was also identified as a major barrier. The survey findings suggest three areas in which to focus efforts to help facilitate ongoing drug development: (1) improving engagement with parents of children who may be eligible to enroll in a pediatric antibacterial drug trial, (2) broadening inclusion criteria to allow more participants to enroll, and (3) ensuring adequate staffing and establishing sustainable financial strategies, such as funding pediatric trial networks. The pediatric antibacterial drug trials enterprise is likely to benefit from focused efforts by all stakeholders to remove barriers and enhance facilitation.
    Keywords Pediatric antibacterial drug trials ; Pediatric clinical research ; Facilitators ; Barriers ; Medicine (General) ; R5-920
    Subject code 360
    Language English
    Publishing date 2018-03-01T00:00:00Z
    Publisher Elsevier
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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    Inter-library loan at ZB MED

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  3. Article ; Online: Parents' perceived obstacles to pediatric clinical trial participation

    Rachel G. Greenberg / Breck Gamel / Diane Bloom / John Bradley / Hasan S. Jafri / Denise Hinton / Sumathi Nambiar / Chris Wheeler / Rosemary Tiernan / P. Brian Smith / Jamie Roberts / Daniel K. Benjamin, Jr.

    Contemporary Clinical Trials Communications, Vol 9, Iss C, Pp 33-

    Findings from the clinical trials transformation initiative

    2018  Volume 39

    Abstract: Enrollment of children into pediatric clinical trials remains challenging. More effective strategies to improve recruitment of children into trials are needed. This study used in-depth qualitative interviews with parents who were approached to enroll ... ...

    Abstract Enrollment of children into pediatric clinical trials remains challenging. More effective strategies to improve recruitment of children into trials are needed. This study used in-depth qualitative interviews with parents who were approached to enroll their children in a clinical trial in order to gain an understanding of the barriers to pediatric clinical trial participation. Twenty-four parents whose children had been offered the opportunity to participate in a clinical trial were interviewed: 19 whose children had participated in at least 1 clinical trial and 5 who had declined participation in any trial. Each study aspect, from the initial explanation of the study to the end of the study, can affect the willingness of parents to consent to the proposed study and future studies. Establishing trust, appropriate timing, a transparent discussion of risks and benefits oriented to the layperson, and providing motivation for children to participate were key factors that impacted parents' decisions. In order for clinical trial accrual to be successful, parents' priorities and considerations must be a central focus, beginning with initial trial design. The recommendations from the parents who participated in this study can be used to support budget allocations that ensure adequate training of study staff and improved staffing on nights and weekends. Studies of parent responses in outpatient settings and additional inpatient settings will provide valuable information on the consent process from the child's and parent's perspectives. Further studies are needed to explore whether implementation of such strategies will result in improved recruitment for pediatric clinical trials.
    Keywords Pediatric clinical trials ; Interview ; Antibacterial ; Parental consent ; Recruitment ; ABDD ; Medicine (General) ; R5-920
    Subject code 610
    Language English
    Publishing date 2018-03-01T00:00:00Z
    Publisher Elsevier
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

    Full text online

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    Inter-library loan at ZB MED

    Your chosen title can be delivered directly to ZB MED Cologne location if you are registered as a user at ZB MED Cologne.

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