Family Perspectives on Integrated Child Health Information Systems

Hastings, Terry Marie

doi:10.1097/00124784-200411001-00004

Cited by 4 publications

(3 citation statements)

References 2 publications

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“…Our participants endorsed the notion that the broad use of health data as a resource to improve health 11,12,20 poses risks to personal privacy, in keeping with a previous report. 5 Patients derived a sense of altruism in providing their data, which contrasted with the feeling of powerlessness in having a brain tumour; this notion corresponded with 1 provider's statements that patients may constitute a vulnerable group.…”

Section: Discussionsupporting

confidence: 85%

Ethical concerns around use of artificial intelligence in health care research from the perspective of patients with meningioma, caregivers and health care providers: a qualitative study

McCradden

Baba

Saha³

et al. 2020

cmajo

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Background:As artificial intelligence (AI) approaches in research increase and AI becomes more integrated into medicine, there is a need to understand perspectives from members of the Canadian public and medical community. The aim of this project was to investigate current perspectives on ethical issues surrounding AI in health care. Methods:In this qualitative study, adult patients with meningioma and their caregivers were recruited consecutively (August 2018-February 2019) from a neurosurgical clinic in Toronto. Health care providers caring for these patients were recruited through snowball sampling. Based on a nonsystematic literature search, we constructed 3 vignettes that sought participants' views on hypothetical issues surrounding potential AI applications in health care. The vignettes were presented to participants in interviews, which lasted 15-45 minutes. Responses were transcribed and coded for concepts, frequency of response types and larger concepts emerging from the interview. Results:We interviewed 30 participants: 18 patients, 7 caregivers and 5 health care providers. For each question, a variable number of responses were recorded. The majority of participants endorsed nonconsented use of health data but advocated for disclosure and transparency. Few patients and caregivers felt that allocation of health resources should be done via computerized output, and a majority stated that it was inappropriate to delegate such decisions to a computer. Almost all participants felt that selling health data should be prohibited, and a minority stated that less privacy is acceptable for the goal of improving health. Certain caveats were identified, including the desire for deidentification of data and use within trusted institutions.Interpretation: In this preliminary study, patients and caregivers reported a mixture of hopefulness and concern around the use of AI in health care research, whereas providers were generally more skeptical. These findings provide a point of departure for institutions adopting health AI solutions to consider the ethical implications of this work by understanding stakeholders' perspectives. Abstract Research OPEN CMAJ OPEN, 8(1) E91 Affiliations: Division of Neurosurgery (McCradden,

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Section: Discussionsupporting

confidence: 85%

Ethical concerns around use of artificial intelligence in health care research from the perspective of patients with meningioma, caregivers and health care providers: a qualitative study

McCradden

Baba

Saha³

et al. 2020

cmajo

View full text Add to dashboard Cite

show abstract

“…Similarly, the Child Health Advanced Records Management program, administered by the Utah Department of Health (USA), provides real-time access to information in specific databases to track and monitor child health status (15). These systems facilitate and support collaboration, integration and coordination across organizations and disciplines (14,(16)(17)(18)(19)(20).…”

Section: Integrated Child Health Information Systemsmentioning

confidence: 99%

Development of an integrated child health information system for children who are deaf or hard of hearing

Poon

Hertzman

2010

Paediatrics &Amp; Child Health

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Young children who are deaf or hard of hearing typically participate in health and early intervention service structures involving multiple agencies and service providers, all of whom may be responsive to a child's and family's needs, but remain mutually distinct with minimal interdependence. Lack of coordination may result in fragmented service delivery and may be counterproductive to the provision of family centred services. Increasingly, advancements in technology, such as the development of integrated child health information systems, have facilitated greater coordination and integration of service delivery in multidisciplinary and multisite program contexts. In the present article, the process of developing an integrated child health information system for a new provincial early hearing detection and intervention program in British Columbia is described. Key considerations for system development included the following: the nature of the preprogram structure for information management and sharing; the need for modifications of the structure; and ways that the structure could be improved.

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“…A 1998–2000 survey of families with CSHCN, conducted by Family Partners/Family Voices and Brandeis University, found that families were receptive to the idea of having their child's records in an electronic Child Health Profile, although there were concerns over data security, confidentiality of records, and authorized access to the records [ 35 ]. One parent said she was fortunate her daughter with a metabolic condition was born in a European country where the health laboratory operated continuously, unlike their U.S. home in a "predominantly rural state" [[ 35 ], p. S26]. While American NBS programs with Tandem Mass Spectrometry (TMS) are beginning to operate around the clock, states differ with respect to newborn screening tests offered, and no state has 100% systems integration for follow-up.…”

Section: Introductionmentioning

confidence: 99%

Progress along developmental tracks for electronic health records implementation in the United States

Hollar

2009

Health Res Policy Sys

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The development and implementation of electronic health records (EHR) have occurred slowly in the United States. To date, these approaches have, for the most part, followed four developmental tracks: (a) Enhancement of immunization registries and linkage with other health records to produce Child Health Profiles (CHP), (b) Regional Health Information Organization (RHIO) demonstration projects to link together patient medical records, (c) Insurance company projects linked to ICD-9 codes and patient records for cost-benefit assessments, and (d) Consortia of EHR developers collaborating to model systems requirements and standards for data linkage. Until recently, these separate efforts have been conducted in the very silos that they had intended to eliminate, and there is still considerable debate concerning health professionals access to as well as commitment to using EHR if these systems are provided. This paper will describe these four developmental tracks, patient rights and the legal environment for EHR, international comparisons, and future projections for EHR expansion across health networks in the United States.

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Family Perspectives on Integrated Child Health Information Systems

Cited by 4 publications

References 2 publications

Ethical concerns around use of artificial intelligence in health care research from the perspective of patients with meningioma, caregivers and health care providers: a qualitative study

Ethical concerns around use of artificial intelligence in health care research from the perspective of patients with meningioma, caregivers and health care providers: a qualitative study

Development of an integrated child health information system for children who are deaf or hard of hearing

Progress along developmental tracks for electronic health records implementation in the United States

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