A qualitative analysis of information sharing for children with medical complexity within and across health care organizations

Abstract

BackgroundChildren with medical complexity (CMC) are characterized by substantial family-identified service needs, chronic and severe conditions, functional limitations, and high health care use. Information exchange is critically important in high quality care of complex patients at high risk for poor care coordination. Written care plans for CMC are an excellent test case for how well information sharing is currently occurring. The purpose of this study was to identify the barriers to and facilitators of information sharing for CMC across providers, care settings, and families.MethodsA qualitative study design with data analysis informed by a grounded theory approach was utilized. Two independent coders conducted secondary analysis of interviews with parents of CMC and health care professionals involved in the care of CMC, collected from two studies of healthcare service delivery for this population. Additional interviews were conducted with privacy officers of associated organizations to supplement these data. Emerging themes related to barriers and facilitators to information sharing were identified by the two coders and the research team, and a theory of facilitators and barriers to information exchange evolved.ResultsBarriers to information sharing were related to one of three major themes; 1) the lack of an integrated, accessible, secure platform on which summative health care information is stored, 2) fragmentation of the current health system, and 3) the lack of consistent policies, standards, and organizational priorities across organizations for information sharing. Facilitators of information sharing were related to improving accessibility to a common document, expanding the use of technology, and improving upon a structured communication plan.ConclusionsFindings informed a model of how various barriers to information sharing interact to prevent optimal information sharing both within and across organizations and how the use of technology to improve communication and access to information can act as a solution.

Tertiary paediatric hospital admissions in children and young people with cerebral palsy

“…Studies reiterate the need for adequate information sharing between hospitals and community-based healthcare professionals and emphasize the benefits of care co-ordination and accessible care plans in reducing medical service use in medically complex children (Quigley et al 2014;Adams et al 2013;Antonelli et al 2008;Cohen et al 2012). Studies reiterate the need for adequate information sharing between hospitals and community-based healthcare professionals and emphasize the benefits of care co-ordination and accessible care plans in reducing medical service use in medically complex children (Quigley et al 2014;Adams et al 2013;Antonelli et al 2008;Cohen et al 2012).…”

“…Cerebral palsy hospital admissions 933 surgical and non-surgical admissions in those classified as GMFCS III-V; and (4) admissions due to diseases of the digestive and respiratory systems were among those with the highest rates of all-cause readmissions. Studies reiterate the need for adequate information sharing between hospitals and community-based healthcare professionals and emphasize the benefits of care co-ordination and accessible care plans in reducing medical service use in medically complex children (Quigley et al 2014;Adams et al 2013;Antonelli et al 2008;Cohen et al 2012). However, the design of health systems is often such that the focus is on addressing acute episodes of care, and chronic disease management and care continuum are rarely prioritized (Quigley et al 2014).…”

Children with medical complexity: a scoping review of interventions to support caregiver stress

“…having a usual source for medical care; obtaining referrals when needed; and service coordination) are (Farmer et al 2011;Hamilton et al 2013). Three additional studies further examined the use of electronic healthcare records, care plans and supporting tools to improve service delivery beyond the role of a care coordinator (Adams et al 2013;Quigley et al 2014;Taylor et al 2013).…”

“…familycentred care, shared care plans, timely referrals, care coordination activities and centralized information) were associated with better family functioning through greater access to needed resources and streamlined services, thereby reducing time and financial burdens, affording fewer childcare issues and minimizing work loss (Arauz Boudreau et al 2012;Cohen et al 2012;Drummond et al 2012;Kingsnorth et al 2015;Miller et al 2015;Okumura et al 2009). Care coordinators in particular were identified as essential components in reducing overarching strain and depression scores and/or increasing caregiver satisfaction and service access (Adams et al 2013;Cady et al 2014;Carter et al 2007;Farmer et al 2005;Farmer et al 2011;Hamilton et al 2013;Kelly et al 2008;Kuo et al 2013;Lawson et al 2011;Palfrey et al 2004;Quigley et al 2014;Robson & Beattie 2004;Taylor et al 2013;Wood et al 2009a).…”

From Care Plans to Care Coordination

“…Request permissions from Permissions@acm.org. crises, and they account for a disproportionate share of healthsystem use and costs [31,26].…”