BACKGROUND: We sought to determine the value and feasibility of developing plain language summaries (PLS) of peer-reviewed articles for patients. METHODS: Members of the European Patients Academy on Therapeutic Innovation or UCB Pharma (N = 74) with a diagnosis of chronic disease, as well as a group of randomly selected neurologists in the US (N = 90) participated in online surveys. Two physicians, 5 patients, and 1 caregiver participated in interviews. RESULTS: Patient survey and interview participants reported that they routinely sought health-related information online. Articles in scientific journals were ranked the third most important source in the survey (47%), after general Internet searches (61%) and patient-specific websites (57%). Survey physicians were equivocal in their views; 46% rated PLS as valuable, 46% as neutral, and 8% as not valuable; however, 60% reported they would use them. A predominant theme emerging in patient interviews was the importance of knowledge and the sense of empowerment it engenders. Patients viewed PLS as tools to facilitate knowledge sharing and making important information accessible. In interviews, physicians noted the value of PLS in generating dialogue, saving time and streamlining communication with patients, as patients are not completely dependent on them for information. CONCLUSION: Our results indicate PLS could play an important role in the patient-physician dialogue. Although patients in this study tended to be more informed and engaged than the general patient population, with continued expansion of online platforms and open-access publishing, it is likely that greater numbers of patients will seek more specialized health-related information in the future.
BACKGROUND: We sought to determine the value and feasibility of developing plain language summaries (PLS) of peer-reviewed articles for patients. METHODS: Members of the European Patients Academy on Therapeutic Innovation or UCB Pharma (N = 74) with a diagnosis of chronic disease, as well as a group of randomly selected neurologists in the US (N = 90) participated in online surveys. Two physicians, 5 patients, and 1 caregiver participated in interviews. RESULTS:Patient survey and interview participants reported that they routinely sought health-related information online. Articles in scientific journals were ranked the third most important source in the survey (47%), after general Internet searches (61%) and patient-specific websites (57%). Survey physicians were equivocal in their views; 46% rated PLS as valuable, 46% as neutral, and 8% as not valuable; however, 60% reported they would use them. A predominant theme emerging in patient interviews was the importance of knowledge and the sense of empowerment it engenders. Patients viewed PLS as tools to facilitate knowledge sharing and making important information accessible. In interviews, physicians noted the value of PLS in generating dialogue, saving time and streamlining communication with patients, as patients are not completely dependent on them for information. CONCLUSION: Our results indicate PLS could play an important role in the patient-physician dialogue. Although patients in this study tended to be more informed and engaged than the general patient population, with continued expansion of online platforms and open-access publishing, it is likely that greater numbers of patients will seek more specialized health-related information in the future.
Entities:
Keywords:
health-related information; lay language summaries; patient value; patient-physician dialogue
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