Addressing the recognized challenges and inequalities in providing high quality healthcare for rare diseases such as children's interstitial lung disease (chILD) requires collaboration across ...institutional, geographical, discipline, and system boundaries. The Children's Interstitial Lung Disease Respiratory Network of Australia and New Zealand (chILDRANZ) is an example of a clinical network that brings together multidisciplinary health professionals for collaboration, peer learning, and advocacy with the goal of improving the diagnosis and management of this group of rare and ultra-rare conditions. This narrative review explores the multifaceted benefits arising from social learning spaces within rare disease clinical networks by applying the value creation framework. The operation of the chILDRANZ network is used as an example across the framework to highlight how value is generated, realized, and transferred within such collaborative clinical and research networks. The community of practice formed in the chILDRANZ multidisciplinary meetings provides a strong example of social learning that engages with the uncertainty inherent in rare disease diagnosis and management and pays attention to generate new knowledge and best practice to make a difference for children and families living with chILD. This review underscores international calls for further investment in, and support of, collaborative clinical networks and virtual centers of excellence for rare disease.
In an effort to expedite the publication of articles, AJHP is posting manuscripts online as soon as possible after acceptance. Accepted manuscripts have been peer-reviewed and copyedited, but are ...posted online before technical formatting and author proofing. These manuscripts are not the final version of record and will be replaced with the final article (formatted per AJHP style and proofed by the authors) at a later time.
Our organization implemented a health-system pharmacy/community pharmacy transitions of care (TOC) program, developing a scalable model to improve care transitions from the health system to the community setting for shared patients.
In this report, we describe our organization's experiences in taking a purposeful approach to building and pilot testing a partnership between our department of pharmacy and 14 community pharmacies within a larger statewide network to improve TOC across care settings. We have been successful in partnering with our electronic health record (EHR) vendor to enhance access capabilities to allow for documentation by community pharmacists (external to the organization) to be included in the patient record as a note. The goal of the partnership with community pharmacies is to elevate TOC for patients, identify and resolve medication therapy problems that may occur post discharge and lead to poor outcomes, and improve continuity of care across practice settings.
Our department of pharmacy has led a successful initiative to promote collaboration with local external community pharmacies. This program has led to innovative advancements in EHR capabilities, promoting transparency in the documentation of pharmacy services and making this documentation visible to all care team members.
Objective:
Peer support specialists (PSS) are an integral part of the mental health workforce. The purpose of this study was to better understand how the COVID-19 pandemic affected their employment ...status and day-to-day work.
Methods:
A cross-sectional, online survey was conducted (May–June 2020). Recruitment occurred through the National Association of Peer Specialists and additional snowball sampling. Closed- and open-ended questions sought information about employment status, work tasks, challenges faced by PSS and by individuals they supported, and positive impacts they experienced.
Results:
A total of 1,280 surveys were analyzed. Nine percent of respondents reported having lost their job as a result of COVID-19. Of these, 65% reported a length of employment of 2 or more years, and 61% reported working 35 hours or less per week. Job tasks changed dramatically, with 73% reporting engagement in new tasks, including increased reliance on technology (N=717), increased coordination of resources (N=123), and COVID-19–related tasks (N=142). Engagement in some support tasks decreased significantly from prepandemic levels, including individual support provision (p<0.001) and group facilitation (p<0.001). Respondents reported significant challenges among individuals they supported, including increased isolation (92%), substance use (67%), housing instability (38%), and food insecurity (64%). Although respondents also reported challenges, satisfaction with organizational and supervisory support was high. Most respondents (73%) reported positive impacts or benefits from the pandemic.
Conclusions:
The changing roles and tasks identified in this study have implications for hiring, training, supervising, and supporting peer staff. The peer workforce demonstrated flexibility and commitment to meeting increasing needs.
A Community Genetics carrier screening program for the Jewish community has operated on-site in high schools in Sydney (Australia) for 25 years. During 2020, in response to the COVID-19 pandemic, ...government-mandated social-distancing, 'lock-down' public health orders, and laboratory supply-chain shortages prevented the usual operation and delivery of the annual testing program. We describe development of three responses to overcome these challenges: (1) pivoting to online education sufficient to ensure informed consent for both genetic and genomic testing; (2) development of contactless telehealth with remote training and supervision for collecting genetic samples using buccal swabs; and (3) a novel patient and specimen identification 'GeneTrustee' protocol enabling fully identified clinical-grade specimens to be collected and DNA extracted by a research laboratory while maintaining full participant confidentiality and privacy. These telehealth strategies for education, consent, specimen collection and sample processing enabled uninterrupted delivery and operation of complex genetic testing and screening programs even amid pandemic restrictions. These tools remain available for future operation and can be adapted to other programs.
As genomics becomes embedded into healthcare, public genomic health literacy is critical to support decision-making for personal and family health decisions and enable citizens to engage with related ...social issues. School science education has the potential to establish the foundations of genetic and genomic literacy. The concept of literacy extends beyond conceptual understanding of biological principles to familiarity with the applications and implications of genetics, critical thinking skills, and socioscientific reasoning. We developed and evaluated a suite of resources for teaching genetics and genomics in the Australian senior biology syllabus for students aged 16–18 years. The aim was to increase teachers’ knowledge and confidence to teach genetic and genomic content, and their capacity to develop robust genetic literacy in their students. Resources, including an inquiry-based task and five associated lesson plans, were developed and made freely available to teachers online. Evaluation was undertaken between December 2019 and March 2020 with a post-use survey emailed to teachers who had accessed the resources. The 56 teachers who responded rated the resources as high quality, engaging, and well-aligned with the syllabus. Teachers who used the resources self-reported increases in their knowledge and confidence in teaching. They also perceived positive outcomes in their students, reporting that the resources deepened their students understanding of genetic concepts, helped them to consider social and ethical issues, and developed their higher order thinking skills. Findings may inform future interactions with high schools to improve genetic literacy.
This study aimed to develop an online educational program for using polygenic risk score (PRS) for breast and ovarian cancer risk assessments and to evaluate the impact on the attitudes, confidence, ...knowledge, and preparedness of genetic health care providers (GHPs).
The educational program comprises an online module that covers the theoretical aspects of PRS and a facilitated virtual workshop with prerecorded role-plays and case discussions. Data were collected in pre- and posteducation surveys. Eligible participants were GHPs working in Australian familial cancer clinics registered to recruit patients for a breast and ovarian cancer PRS clinical trial (n = 12).
A total of 124 GHPs completed the PRS education, of whom 80 (64%) and 67 (41%) completed the pre- and posteducation surveys, respectively. Before education, GHPs reported limited experience, confidence, and preparedness using PRS, but they recognized its potential benefits. After education, GHPs indicated improved attitudes (P ≤ .001), confidence (P ≤ .001), knowledge (P ≤ .001), and preparedness (P ≤ .001) to use PRS. Most GHPs thought that the program entirely met their learning needs (73%) and was completely relevant to their clinical practice (88%). GHPs identified PRS implementation barriers, including limited funding models, diversity issues, and need for clinical guidelines.
Our education program improved GHP attitudes, confidence, knowledge, and preparedness for using PRS/personalized risk and provides a framework for the development of future programs.
Introduction
Total pancreatectomy with autologous islet transplant (TPAIT) is indicated for patients with chronic pancreatitis to improve quality of life while reducing complications from ...hypoglycemia. Continuous glucose monitoring (CGM) was used to assess overall islet function and the incidence of hypoglycemia pre‐ and post‐operatively.
Methods
Nineteen patients who underwent TPAIT at a single center from 2018 to 2020 were included. Pre‐operatively, patients were defined by diabetic status. HbA1c, stimulated C‐peptide, and CGM were used to characterize glycemic function.
Results
Pre‐operatively, three patients had diabetes, and 16 patients did not have diabetes. Eight out of 16 non‐diabetic patients were insulin independent (50%). Of six non‐diabetic patients with > 10% hypoglycemia on pre‐operative CGM, 33% were insulin‐independent post‐operatively (P = .3). Of non‐diabetic patients with ≥ 80% time in the euglycemic range, 62% were insulin‐independent post‐operatively (P = .2). For patients without diabetes, the median percent time in hypoglycemic range was reduced from 8% to 1% (P = .001). Delta C‐peptide had a positive correlation with islet yield (P = .03).
Discussion
Conventional evaluation of TPAIT patients assesses primarily beta cell function. As pancreatogenic diabetes is concerning principally for the risk of hypoglycemia, assessment of alpha cell function can improve the quality of care. CGM better captures islet function and increases the identification of hypoglycemia.
This study compared students’ ability to apply knowledge gained from the learning models of hands-on experiences and utilizing learning technologies through the use of a STEM design challenge. The ...participants of the study were 19 kindergarten students studying Forces and Interactions: Pushes and Pulls. In the study, participants were taught six distinct standards- based lessons through these two modalities. Students were taught three lessons using hands-on experiences and three lessons using learning technologies. After the lessons were taught and assessed, the participants engaged in two STEM design challenges. The challenges, similar in format, required the students to grapple with finding solutions to a problem aligned with the standards of the unit. This study analyzed the data collected from these solutions. The objective was to find a trend in the successes of students to design solutions rooted in knowledge gained from learning through hands-on experiences or through using learning technologies. In this study, 100% of the participants were able to successfully apply knowledge gained from lessons taught through hands-on experiences, while only 50% of the participants were able to successfully apply knowledge gained from learning technologies.
PURPOSEThe prescribing authorities, clinical activities, and productivity documentation strategies of ambulatory care clinic–based pharmacists practicing within a large academic health system are ...described.
SUMMARYNorth Carolina law encourages progressive pharmacy practice through acquisition of the clinical pharmacist practitioner (CPP) designation. Qualified CPPs are authorized to provide collaborative drug therapy management services, including medication prescribing and ordering of laboratory tests, according to defined protocols and under physician supervision. The University of North Carolina Medical Center has approximately 30 CPPs deployed across a wide range of ambulatory care clinical practice sites. This article describes (1) the pharmacy departmentʼs implementation of an ambulatory care practice model, (2) the credentialing and privileging process leading to granting of prescribing privileges, (3) metrics used to demonstrate the impact of CPP activities, (4) recommended general criteria for ambulatory care practice site identification, and (5) strategies for overcoming barriers to successful implementation of ambulatory care–focused clinical pharmacist services. Aggregated intervention-tracking data compiled by seven of the medical centerʼs CPP ambulatory care practice sites indicate extensive CPP involvement in direct patient care encounters and patient or provider consultations, with large numbers of medication-related interventions to support institutional cost-avoidance and revenue goals.
CONCLUSIONCPPs deployed at the medical centerʼs ambulatory care clinics have had a positive impact on clinical and cost outcomes, improving patient care through interventions, contributing to readmission reduction efforts, generating indirect revenue through cost avoidance, and generating new revenue through billing for patient visits.
Abstract 1067
Poster Board I-89
In some patients with antiphospholipid antibody (APLA) syndrome treated with warfarin, the International Normalized Ratios (INRs) obtained from plasma, as well as from ...full blood via fingerstick by older point-of-care (POC) devices, are unreliable. Reliability of newer POC devices in APLA syndrome patients is unknown and was investigated in the present study.
60 patients on stable warfarin were enrolled: 30 with APLA syndrome, 30 without. INRs were determined using 4 POCs: CoaguChekXS®, ProTime®, the investigational ProTime®, and INRatio2®. Plasma from phlebotomy was tested for: PT, factor II activity, chromogenic factor X, anticardiolipin and anti-beta-2-glycoprotein I antibodies, lupus anticoagulant. Analysis: Data from the venipuncture INRs from the patients without APLA are used to estimate the relationship between INR and Factor II level and determine the therapeutic range of Factor II. Using the same therapeutic INR range, for each individual POC test the proportion of patients whose clinical decision based on the POC instrument is correct is estimated, along with 95% confidence intervals. This is done for patients with and without APLA. These two proportions are compared between the two groups using Fisher's Exact Tests; nominal p-values are reported. A similar analysis is done using the Factor X test as the gold standard.
Data collection has been completed; analysis of results is pending and will be available before December 2009.
Data analysis will show whether the presently available POC devices give reliable INR results in patients with APLA syndrome on warfarin and can be reliably used to monitor warfarin therapy.
Moll:Hemosense: research support; Roche: reserarch support; ITC: Consultancy, research support. McKnight:ITC: Honoraria. Deal:ITC: Consultancy.
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