<\/a><\/figure><\/div> \u201cthe presentation was really a focus on how we can best design our research and clinical trials with the patient at the centre\u201d,<\/em> she said. \u201cthat means using all of the evidence that we have that\u2019s been delivered through the questionnaires patients have completed in the past, interviewing them before the trial, and working with them throughout the study.<\/em><\/p>\u201cwe want to really have a partnership with them, and i have found that with phoenix, patients have helped every step of the way with making sure we\u2019re asking about side effects, medication burden, and quality of life regularly.<\/em><\/p>\u201cwithout having that dialogue with them, i don\u2019t think the trial would be as well designed as it is now. it has really enhanced our study and the pha uk is such a brilliant network to be able to engage with patients who are interested in being involved.\u201d<\/em><\/p>dr varian also delivered a presentation about patient-oriented research at the national ph research forum, a gathering of ph researchers and clinicians organised by the pha uk and held at the end of last year. aiming to inspire other researchers to keep patients at the centre of all studies, her presentation was voted the best of the conference, securing a \u00a31,000 grant to enable her to further her work in this area.<\/p>","protected":false},"excerpt":{"rendered":"
\u2018phoenix\u2019 is an innovative new trial testing how well pah drugs can be personalised for patients \u2013 and it\u2019s set to roll out across more of the uk\u2019s specialist centres soon. we spoke to dr frankie varian of the sheffield pulmonary vascular disease unit to find out more about the study\u2019s aims, and how it\u2019s been shaped by patients from the start\u2026 <\/p>\n","protected":false},"author":4,"featured_media":69377,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-69375","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorised"],"acf":[],"_links":{"self":[{"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/posts\/69375"}],"collection":[{"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/comments?post=69375"}],"version-history":[{"count":4,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/posts\/69375\/revisions"}],"predecessor-version":[{"id":69384,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/posts\/69375\/revisions\/69384"}],"wp:featuredmedia":[{"embeddable":true,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/media\/69377"}],"wp:attachment":[{"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/media?parent=69375"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/categories?post=69375"},{"taxonomy":"post_tag","embeddable":true,"href":"\/\/www.aselpijama.com\/wp-json\/wp\/v2\/tags?post=69375"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}