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EHR for research versus patient confidentiality.

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clinical researchOne aspect of electronic care records which has received little attention is the potential benefit to clinical research. Electronic records could facilitate new interfaces between care and research environments, leading to great improvements in the scope and efficiency of research. Benefits range from systematically generating hypotheses for research to undertaking entire studies based only on electronic record data. Researchers and research managers must engage with electronic record initiatives to realize these benefits. Clinicians and patients must have confidence in the consent, confidentiality and security arrangements for the uses of secondary data. Provided that such initiatives establish adequate information governance arrangements, within a clear ethical framework, innovative clinical research should flourish. Major benefits to patient care could ensure given sufficient development of the care-research interface via electronic records.

 

One aspect of the EHR is the great potential of electronic records to benefit clinical research. Research, service-development and public health uses of care records have been referred to as “secondary uses”. In the United Kingdom, the NPfIT is preparing a Secondary Uses Service (SUS) that will become part of the new NHS Information Centre. The confidentiality and security of patient records is an essential consideration, especially in the SUS context, where anonymization and pseudonymization of records is planned. Understandably both patients and professionals have raised concerns about the security of electronic records; and it is important that adequate information governance arrangements are established to ensure that confidentiality is protected. The accuracy of records and the quality of data coding must also be assured [6]. Given adequate safeguards, electronic care records could facilitate new interfaces between care and research environments, leading to great improvements in the scope and efficiency of clinical research.

Possible research benefits range from systematically generating hypotheses for research to undertaking entire studies based only on electronic record data. Information for planning studies, such as prevalence and variance of conditions in local contexts could be collected with ease. The patient-owned section of the record could be used by individuals to indicate their general willingness or otherwise to participate in research, or by investigators to alert potential research participants to the existence of a trial. Electronic prompts could signal an attending clinician of a patient's eligibility for an ongoing trial. Simple links from the care electronic record to the trial website could be used to provide further information on the trial for both clinician and patient. Informed consent procedures could be handled systematically under full clinical information and research governances.

Get the full article here http://www.jmir.org/2005/1/e4/HTML

Last Updated ( Sunday, 13 April 2008 23:48 )  

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