SRFP093: Strengthening the bridge across primary and specialty care for patients with rare diseases
Melanie Langelier, MSc, RN, Doctoral Student; Peter Nugus, PhD, BA, MA, MEd
Abstract
CONTEXT: Because primary health care is the frontline of the health system, and gateway to specialized services, specialty physicians rely on family physicians to recognize rare diseases. Collaborative care demands that specialty physicians be specific in terms of the information they require from family physicians that would help them fulfill their specialized role if an optimal continuum of care is to be maintained for patients with rare diseases. Very few studies have examined the important interface between primary and acute, hospital-based care in terms of the intense case study of rare diseases, much less how cross-sector education can be optimized.
OBJECTIVE: 1, To identify the implied disease interpretations of specialty-hospital-based physicians in relation to rare diseases, and their informational expectations of family physicians for clinical decision-making. 2. To compile recommendations for feedback that will form the basis of an educational intervention for family physicians in the diagnosis and care of patients with rare diseases.
STUDY DESIGN: This study follows a qualitative research design to inductively discern perspectives, meanings and interpretations. Semi-structured interviews and observations will be undertaken. Transcripts will be analyzed through thematic analysis, whereby codes of perceptions and behaviours will be compared and contrasted, and variations accounted for.
SETTING: The setting is a quaternary care metropolitan teaching hospital, to maximize specialization and complexity as a setting to analyze decision-making.
POPULATION STUDIED: The research is being conducted among doctors at different levels of training and medical students. There is representation among different medical specialties to obtain broad representation. Participants vary by gender.
ANTICIPATED RESULTS: The research will show how valid contemporary understandings of “rare disease” are, and what constitutes optimal collaborative decision-making between care and specialty care.
CONCLUSIONS: Through the study of the intense case of rare diseases, this research will inform particular educational interventions to optimize the transfer of information, and alignment of decision-making principles across primary and acute care.
OBJECTIVE: 1, To identify the implied disease interpretations of specialty-hospital-based physicians in relation to rare diseases, and their informational expectations of family physicians for clinical decision-making. 2. To compile recommendations for feedback that will form the basis of an educational intervention for family physicians in the diagnosis and care of patients with rare diseases.
STUDY DESIGN: This study follows a qualitative research design to inductively discern perspectives, meanings and interpretations. Semi-structured interviews and observations will be undertaken. Transcripts will be analyzed through thematic analysis, whereby codes of perceptions and behaviours will be compared and contrasted, and variations accounted for.
SETTING: The setting is a quaternary care metropolitan teaching hospital, to maximize specialization and complexity as a setting to analyze decision-making.
POPULATION STUDIED: The research is being conducted among doctors at different levels of training and medical students. There is representation among different medical specialties to obtain broad representation. Participants vary by gender.
ANTICIPATED RESULTS: The research will show how valid contemporary understandings of “rare disease” are, and what constitutes optimal collaborative decision-making between care and specialty care.
CONCLUSIONS: Through the study of the intense case of rare diseases, this research will inform particular educational interventions to optimize the transfer of information, and alignment of decision-making principles across primary and acute care.
Jack Westfall
jwestfall@aafp.org 11/21/2021Very interesting research. Great work. Thanks