BMC Health Services Research | |
A qualitative analysis of information sharing for children with medical complexity within and across health care organizations | |
Eyal Cohen4  Charlotte Moore Hepburn1  Sherri Adams2  Ashley Lacombe-Duncan5  Laura Quigley3  | |
[1] Department of Paediatrics, University of Toronto, 1 King’s College Circle, Toronto, ON M5S 1A8, Canada;Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 155 College Street, Suite 130, Toronto, ON M5T 1P8, Canada;Family Medicine Centre, Toronto Western Hospital, 399 Bathurst Street, Toronto, ON M5T 2S8, Canada;CanChild Center for Childhood Disability Research, 1400 Main Street West, Room 408, Hamilton, ON L8S 1C7, Canada;Division of Paediatric Medicine and Child Health Evaluative Sciences, The Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G 1X8, Canada | |
关键词: Health policy; Medical complexity; Paediatrics; Communication; Information sharing; | |
Others : 1130650 DOI : 10.1186/1472-6963-14-283 |
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received in 2013-05-17, accepted in 2014-06-19, 发布年份 2014 | |
【 摘 要 】
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.
【 授权许可】
2014 Quigley et al.; licensee BioMed Central Ltd.
【 预 览 】
Files | Size | Format | View |
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20150228020415449.pdf | 1686KB | download | |
Figure 2. | 84KB | Image | download |
Figure 1. | 78KB | Image | download |
【 图 表 】
Figure 1.
Figure 2.
【 参考文献 】
- [1]Bethell CD, Read D, Blumberg SJ, Newacheck PW: What is the prevalence of children with special health care needs? Toward an understanding of variations in findings and methods across three national surveys. Matern Child Health J 2008, 12(1):1-14.
- [2]Bethell C, Read D, Brockwood K: Using existing population based data sets to measure the American Academy of Pediatrics definition of medical home for all children and children with special health care needs. Pediatrics 2004, 113:1529-1537.
- [3]Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, Srivastava R: Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics 2011, 127(3):529-538.
- [4]Cohen E, Berry JG, Camacho X, Anderson G, Wodchis W, Guttmann A: Patterns and costs of health care use of children with medical complexity. Pediatrics 2012, 130:e1463-e1470.
- [5]Slonim AD, LaFleur B, Ahmed W, Joseph J: Hospital-reported medical errors in children. Pediatrics 2003, 111(3):617-621.
- [6]Kelly AM, Kratz B, Bielski M, Rhinehart PM: Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics 2002, 110(6):1322-1327.
- [7]American Academy of Pediatrics Committee on Children with Disabilities: Care coordination: health and related systems of care for children with special health care needs. Pediatrics 1999, 104:978-981.
- [8]Gordon JB, Colby HH, Bartelt T, Jablonski D, Krauthoefer ML, Havens P: A tertiary care-primary care partnership model for medically compelx and fragile children and youth with special health care needs. Arch Pediatr Adolesc Med 2007, 161(10):937-944.
- [9]Adams S, Cohen E, Mahant S, Friedman JN, MacCulloch R, Nicholas DB: Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study. BMC Pediatr 2013., 13(10) doi:10.1186/1471-2431-13-10
- [10]Report of the paediatric complex care coordination expert panel. https://www.sickkids.ca/pdfs/Paediatric-Medicine/34603-PCCC%20Expert%20Panel%20Report.pdf webcite
- [11]American Academy of Pediatrics, Committee on Pediatric Emergency Medicine and Council on Clinical Information Technology, American College of Emergency Physicians, Pediatric Emergency Medicine Committee: Policy statement--emergency information forms and emergency preparedness for children with special health care needs. Pediatrics 2010, 125(4):829-837.
- [12]Medical Home Initiatives for Children with Special Needs Project Advisory Committee, American Academy of Pediatrics: Medical Home Initiatives for Children with Special Needs Project Advisory Committee American Academy of Pediatrics: The medical home. Pediatrics 2002, 110(Pt. 1):184-186.
- [13]Leonard KJ, Wiljer D: Patients are destined to manage their care. Healthc Q 2007, 10:76-78.
- [14]Miller AR, Recsky MA, Armstrong RW: Responding to the needs of children with chronic health conditions in an era of health services reform. CMAJ 2004, 171(11):1366-1367.
- [15]Stille CJ: Communication, comanagement, and collaborative care for children and youth with special healthcare needs. Pediatr Ann 2009, 38(9):498-504.
- [16]Matlow A, Wright JG, Zimmerman B, Thomson K, Valente M: How can the principles of complexity science be applied to improve the coordination of care for complex pediatric patients? Qual Saf Health Care 2006, 15(2):85-88.
- [17]Beard L, Schein R, Morra D, Wilson K, Keelan J: The challenges in making electronic health records accessible to patients. J Am Med Inform Assoc 2012, 19:116-120.
- [18]Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ: Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc 2006, 13(2):121-127.
- [19]Walker J, Pan E, Johnston D, Adler-Milstein J, Bates DW, Middleton B: The value of health care information exchange and interoperability. Health Aff 2005., Suppl web exclusiveW5-10-WF-18
- [20]Boniface M, Watkins ER, Saleh A, Dogac A, Eichelberg M: A secure semantic interoperability infrastructure for inter-enterprise sharing of electronic healthcare records. Stud Health Technol Inform 2006, 120:225-235.
- [21]Bates DW: Physicians and ambulatory electronic health records. Health Aff 2005, 24(5):1180-1189.
- [22]McGinn CA, Grenier S, Duplantie J, Shaw N, Sicotte C, Mathieu L, Leduc Y, Legare F, Gagnon MP: Comparison of user groups’ perspectives of barriers and facilitators to implementing electronic health records: a systematic review. BMC Med 2011, 9(46):1-10.
- [23]Anderson C: The integrated children’s system: challenges of information sharing. Paediatr Nurs 2005, 17(10):34-36.
- [24]Silvester BV, Carr SJ: A shared electronic health record: lessons from the coalface. MJA 2009, 190(11):S113-S116.
- [25]Rich E, Lipson D, Libersky J, Parchman M: Coordinating Care for Adults With Complex Care Needs in thePatient-Centered Medical Home: Challenges and Solutions. White Paper. Rockville, MD: Agency for Healthcare Research and Quality; 2012.
- [26]Creswell J: Qualitative inquiry and research design: Choosing among five traditions. 2nd edition. Thousand Oaks, CA: Sage Publication, Inc; 2007.
- [27]Toronto Central LHIN. http://www.torontocentrallhin.on.ca/ webcite
- [28]Personal Health Information Protection Act (PHIPA). http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_04p03_e.htm webcite
- [29]Personal Health Information in New Brunswick: Balancing privacy rights and access requirements. http://www.gnb.ca/0051/personal_health_information/index-e.asp webcite
- [30]Nass JS, Levit LA, Gostin LO (Eds): Beyond the PHIPPA Prviacy Rule: enhancing Privacy, Improving Health through Research Washington, DC: National Academies Press; 2009.
- [31]Kingsnorth S, Lacombe-Duncan A, Keilty K, Bruce-Barrett C, Cohen E: Inter-organizational partnership for children with medical complexity: the integrated complex care model. Child Care Health Dev 2013. doi:10.1111/cch.12122
- [32]Chapter 8: The privacy officer, the commissioner, and the board. http://ontario.cmha.ca/public-policy/capacity-building/privacy-toolkit/ webcite
- [33]Nasmith L, Ballem P, Baxter R, Bergman H, Colin-Thomé D, Herbert C, Keating N, Lessard R, Lyons R, McMurchy D, Ratner P, Rosenbaum P, Tamblyn R, Wagner E, Zimmerman B: Transforming care for Canadians with chronic health conditions: Put people first, expect the best, manage for results. Ottawa, ON, Canada: Canadian Academy of Health Sciences; 2010:1-83.
- [34]Berry JG, Agrawal R, Kuo DZ, Cohen E, Risko W, Hall M, Casey P, Gordon J, Srivastava R: Characteristics of hospitalizations for patients who use a structured clinical care program for children with medical complexity. J Pediatr 2011, 159(2):284-290.
- [35]Ontario’s Framework: Preventing and Managing Chronic Disease. http://www.health.gov.on.ca/en/pro/programs/cdpm/pdf/framework_full.pdf webcite
- [36]Schoen C, Osborn R, How SKH, Doty MM, Peugh J: In chronic condition: experiences of patients with complex health care needs, in eight countries, 2008. Health Affairs 2008, Web Exclusive:w1-w16.
- [37]McGraw D, Dempsey JX, Harris L, Goldman J: Privacy as an enabler, not an impediment: building trust into health information exchange. Health Aff 2009, 28(2):416-425.
- [38]Tom JO, Mangione-Smith R, Solomon C, Grossman DC: Integrated personal health record use: association with parent-reported care experiences. Pediatrics 2012, 130:e183-e190.