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Open Access Highly Accessed Research article

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

Laura Quigley1, Ashley Lacombe-Duncan2, Sherri Adams23, Charlotte Moore Hepburn24 and Eyal Cohen2456*

Author Affiliations

1 Family Medicine Centre, Toronto Western Hospital, 399 Bathurst Street, Toronto, ON M5T 2S8, Canada

2 Division of Paediatric Medicine and Child Health Evaluative Sciences, The Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G 1X8, Canada

3 Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 155 College Street, Suite 130, Toronto, ON M5T 1P8, Canada

4 Department of Paediatrics, University of Toronto, 1 King’s College Circle, Toronto, ON M5S 1A8, Canada

5 Institute of Health Policy, Management and Evaluation, University of Toronto, 155 College Street, Suite 425, Toronto, ON M5T 3 M6, Canada

6 CanChild Center for Childhood Disability Research, 1400 Main Street West, Room 408, Hamilton, ON L8S 1C7, Canada

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BMC Health Services Research 2014, 14:283  doi:10.1186/1472-6963-14-283

Published: 30 June 2014

Abstract

Background

Children 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.

Methods

A 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.

Results

Barriers 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.

Conclusions

Findings 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.

Keywords:
Information sharing; Communication; Paediatrics; Medical complexity; Health policy