Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations.

BACKGROUND: There are increasing calls for patient involvement in sharing health research results, but no evidence-based recommendations to guide such involvement. Our objectives were to: (1) conduct a systematic review of the evidence on patient involvement in results sharing, (2) propose evidence-based recommendations to help maximize benefits and minimize risks of such involvement and (3) conduct this project with patient authors. METHODS: To avoid research waste, we verified that no systematic reviews were registered or published on this topic. We co-created, with patients, a PRISMA-P-compliant protocol. We included peer-reviewed publications reporting the effects of patient involvement in preparing peer-reviewed publications or results summaries from health research studies. We searched (9/10/2017) MEDLINE, EMBASE and the Cochrane Database of Systematic Reviews, and secondary information sources (until 11/06/2018). We assessed the risk of bias in eligible publications and extracted data using standardized processes. To evaluate patient involvement in this project, we co-created a Patient Authorship Experience Tool. RESULTS: All nine eligible publications reported on patient involvement in preparing publications; none on preparing results summaries. Evidence quality was moderate. A qualitative synthesis of evidence indicated the benefits of patient involvement may outweigh the risks. We have proposed 21 evidence-based recommendations to help maximize the benefits and minimize the risks when involving patients as authors of peer-reviewed publications. The recommendations focus on practical actions patient and non-patient authors can take before (10 recommendations), during (7 recommendations) and after (4 recommendations) manuscript development. Using the Patient Authorship Experience Tool, both patient and non-patient authors rated their experience highly. CONCLUSIONS: Based on a systematic review, we have proposed 21 evidence-based recommendations to help maximize the benefits and minimize the risks of involving patients as authors of peer-reviewed publications.

Can treatment during primary HIV infection lead to control of disease without drugs?

Initiating antiretroviral treatment during PHI, particularly in the acute phase (before seroconversion), appears to interrupt the natural history of HIV infection in the host. Although all the parameters of such an interruption are not understood, what remains clear is that a condition can be induced where the host is better able to control viremia in the absence of therapy. Structured treatment interruptions, therapeutic vaccines, and other novel mechanisms may further enhance HIV-specific immunity and viral suppression. The duration of such effects, their outcome on survival, and how they apply to chronic infection are not known. However, just as the study of long-term nonprogressors has provided valuable information about host-virus interactions, so too may the study of induced host control of viremia lead to improved therapeutic approaches and perhaps one day a functional cure.