Title |
Developing patient-friendly genetic and genomic test reports: formats to promote patient engagement and understanding
|
---|---|
Published in |
Genome Medicine, July 2014
|
DOI | 10.1186/s13073-014-0058-6 |
Pubmed ID | |
Authors |
Susanne B Haga, Rachel Mills, Kathryn I Pollak, Catherine Rehder, Adam H Buchanan, Isaac M Lipkus, Jennifer H Crow, Michael Datto |
Abstract |
With the emergence of electronic medical records and patient portals, patients are increasingly able to access their health records, including laboratory reports. However, laboratory reports are usually written for clinicians rather than patients, who may not understand much of the information in the report. While several professional guidelines define the content of test reports, there are no guidelines to inform the development of a patient-friendly laboratory report. In this Opinion, we consider patient barriers to comprehension of lab results and suggest several options to reformat the lab report to promote understanding of test results and their significance to patient care, and to reduce patient anxiety and confusion. In particular, patients' health literacy, genetic literacy, e-health literacy and risk perception may influence their overall understanding of lab results and affect patient care. We propose four options to reformat lab reports: 1) inclusion of an interpretive summary section, 2) a summary letter to accompany the lab report, 3) development of a patient user guide to be provided with the report, and 4) a completely revised patient-friendly report. The complexity of genetic and genomic test reports poses a major challenge to patient understanding that warrants the development of a report more appropriate for patients. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
United States | 6 | 25% |
United Kingdom | 4 | 17% |
Israel | 1 | 4% |
Australia | 1 | 4% |
Colombia | 1 | 4% |
France | 1 | 4% |
Bosnia and Herzegovina | 1 | 4% |
Unknown | 9 | 38% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Scientists | 13 | 54% |
Members of the public | 10 | 42% |
Practitioners (doctors, other healthcare professionals) | 1 | 4% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
United Kingdom | 2 | 1% |
United States | 1 | <1% |
Canada | 1 | <1% |
Unknown | 153 | 97% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Master | 29 | 18% |
Researcher | 28 | 18% |
Other | 12 | 8% |
Student > Ph. D. Student | 11 | 7% |
Student > Bachelor | 9 | 6% |
Other | 31 | 20% |
Unknown | 37 | 24% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 29 | 18% |
Biochemistry, Genetics and Molecular Biology | 17 | 11% |
Nursing and Health Professions | 11 | 7% |
Social Sciences | 10 | 6% |
Agricultural and Biological Sciences | 9 | 6% |
Other | 35 | 22% |
Unknown | 46 | 29% |