{"id":308,"date":"2023-01-01T12:00:26","date_gmt":"2023-01-01T12:00:26","guid":{"rendered":"http:\/\/moomango.co.uk\/ttfa\/?page_id=308"},"modified":"2023-01-05T16:02:07","modified_gmt":"2023-01-05T16:02:07","slug":"8-12-confidentiality-for-advocates-involved-in-research","status":"publish","type":"page","link":"https:\/\/i-base.info\/ttfa\/8-clinical-trials-and-research\/8-12-confidentiality-for-advocates-involved-in-research\/","title":{"rendered":"8.12 Confidentiality during research"},"content":{"rendered":"<p><strong>Most studies involve keeping details about a study confidential including any early results.<\/strong><\/p>\n<p><strong>Community advocates also need to understand and follow similar confidentiality guidelines.\u00a0<\/strong><strong>This sometimes includes signing a confidentiality agreement.<\/strong><\/p>\n<p>Most studies will result in one group in a study doing better than another. As an advocate you may get to see these results before they are presented in public.<\/p>\n<p>But early results can also change during the study.<\/p>\n<p>As long as the study continues to be run ethically and as long as the study question hasn\u2019t been answered, it is important that early results remain confidential.<\/p>\n<p>Publicising early results could cause a study to never reach a final result.<\/p>\n<p>For example, participants may stop or change treatment based on preliminary results, or on word-of-mouth, which might actually be wrong.<\/p>\n<p>Early AZT studies are an example of where early short-term results led to stopping a study and then widely prescribing the drug. Only with results from a longer 2-year study did it become clear that there was no long-term benefit for most participants.<\/p>\n<p>Only in exceptional circumstances and as a last resort should confidential results from an ongoing study be taken to the wider community. Any concerns though should always be discussed within the research group first.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Most studies involve keeping details about a study confidential including any early results. Community advocates also need to understand and follow similar confidentiality guidelines.\u00a0This sometimes includes signing a confidentiality agreement. Most studies will result in one group in a study &hellip;<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":282,"menu_order":10,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-308","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/i-base.info\/ttfa\/wp-json\/wp\/v2\/pages\/308","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/i-base.info\/ttfa\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/i-base.info\/ttfa\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/i-base.info\/ttfa\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/i-base.info\/ttfa\/wp-json\/wp\/v2\/comments?post=308"}],"version-history":[{"count":0,"href":"https:\/\/i-base.info\/ttfa\/wp-json\/wp\/v2\/pages\/308\/revisions"}],"up":[{"embeddable":true,"href":"https:\/\/i-base.info\/ttfa\/wp-json\/wp\/v2\/pages\/282"}],"wp:attachment":[{"href":"https:\/\/i-base.info\/ttfa\/wp-json\/wp\/v2\/media?parent=308"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}