Clinical nurse specialists (CNSs) are leaders for evidence-based change. In the clinical setting, the assessment of need for and evaluation of change usually involve systematic collection, organization, and analysis data. Innovative programs and procedures, although designed for specific patient groups or system problems, can inform others and should be published. Concerned about maintaining privacy, prospective authors are often wary of publishing clinical data collected for patient or system purposes. Maintaining patient and employee privacy are real concerns; however, in many situations, a CNS can publish assessment and evaluation data by following some general guidelines and seeking appropriate counsel within the system. Here are a few things to consider when preparing a manuscript that includes clinical data.
Clinical data are information collected for the purpose of providing health care to individual patients and include demographic information, results of laboratory and other diagnostic tests, and outcomes of medical treatments and nursing interventions. System-level information is similar to clinical data in that it was generated for a targeted purpose and can include satisfaction surveys, program evaluations, and operational reports. Both patient and system-level data are used to make decisions in the clinical setting that can affect an individual patient or a system-level program. It was not intended to be shared beyond the original purpose.
When preparing a manuscript that includes clinical data, a CNS should de-identify all data and report aggregate findings. While this procedure removes links to individual patients or employees, the health care agency will likely be identified. A published article usually includes information about the author, such as author's job title and affiliation; thus, readers can easily link the report of a project to an author's employer and clinical setting. For this reason, CNSs should follow internal procedures for submitting a manuscript. Most employers have procedures that must be followed and could include internal review of the manuscript, adding a disclaimer, or other requirements. Remember that the employer's procedures are important; however, the author is responsible for the accuracy of clinical data, the findings, issues involving plagiarism, inaccurate references, or misrepresentations in the manuscript.
Some tips for de-identifying data include reporting data in aggregate, using pseudonyms, and avoiding specific detailed case examples. Use demographic statistics such as means, median, mode, range, and frequencies to summarize data without revealing individual findings. When reporting open-ended comments, such as might result from questionnaire, use pseudonyms. Remove any identifying data from quotes. If a questionnaire respondent wrote "my daughter Agnes found the program helped her cope," the author must remove the daughter's name from the quote. Examples are useful for illustrating points; however, details of actual cases may provide enough information to identify the person(s) involved, and if details are important, it is best to exclude the case example. It can be helpful to have several colleagues review the manuscript for any breaks in privacy.
When reporting clinical outcomes involving small programs or programs that serve very narrow populations, it may not be possible to obfuscate even de-identified data. For example, it may not be possible to adequately de-identify data for a manuscript that describes an innovative program for HIV-positive prenatal women in a small community hospital because clinical staff would likely recall enough information about specific cases to identify individuals within the report. Unless all specific patient-related information can be omitted, the results of the program evaluation should not be submitted for publication.
Case studies or critical incident reviews provide intensive exploration of a single patient or situation and are a good source of descriptive information. This method facilitates probing an example case to understand the processes and structural elements that contributed to the outcome and can be particularly useful when the outcome was not anticipated. Case studies may be difficult to de-identify. Several years ago, the journal received a case study from a CNS member of a multidisciplinary transplant team. As a result of the case analysis, members of the team realized that some efforts were being duplicated, while other care needs were not addressed, and that the gaps in care lead to poor patient outcomes. The manuscript was informative; however, the author's affiliation (employer) would be identified; thus, members of the transplant team in this health care system would be easy to identify. In addition, because the case was very complex and thus memorable, it was highly likely that the patient would be able to be identified. Manuscript reviewers made several suggestions for revising the manuscript, but in the case format, it had to be rejected for privacy reasons.
Health care systems collect data using paper or electronic forms and are the property of the system. When submitting a manuscript that includes an agency's form, obtain permission from the agency to have the form appear in the article. Written permission to publish the form should accompany the manuscript submission in the same manner specified for reproducing any copyrighted work. Permission is also needed to publish teaching materials, algorithms, or other clinical tools developed by CNSs in the role of employee.
Dissemination of findings from innovative interventions and programs is an expected professional behavior. When the report includes clinically derived data, privacy must be assured for patients, families, and staff. By keeping privacy principles in mind, the CNSs can have published articles that showcase the many positive outcomes of CNS practice. I look forward to receiving the manuscripts.